Breathe Your Pain Away

When I’m in pain, I have a little trick I use, when I can no longer count on distraction to avoid it. Put me on a ski slope with herniated discs and sciatic nerves screaming and I’ll forget all about them. But sometimes you just can’t shut out that whining voice saying “I hurt. I hurt.”

Often this happens to me when I’m in bed. Sleep doesn’t come and in the quiet of the night, I become all too aware of the grinding pain in my back and hip, or the burning pain in my gut, or the stinging pain from acid eating away at my flesh.

When this happens, I focus on the pain. I take a deep breath in through my nose – and breathe in till I can’t squash in another molecule of oxygen. I hold for a second and then push the air out through my mouth, until every last bit is squeezed from my lungs, then hold for a millisecond again.

What I discover when I do this, is that at the crest, and trough of that breath, and during the small amount of time I hold, my pain goes away. I can extend these spans of time, by holding my breath a little longer each time.

I’m sure at the same time as I’m doing this deep breathing, I’m unconsciously relaxing the muscles around the pain area, and allowing more oxygen to get to it and help relieve it. I am also putting out a positive psychosomatic message to my body. “I can handle this. This has worked before. I am relaxing into the pain in confidence it will go away.” The positive message comforts me emotionally and puts me in a calm state, rather than building anxiety, which again cause tension in my body.

What generally happens is it only takes three or four repetitions and I fall asleep, allowing Hypnos the god of sleep to carry my pain away to his mother, Nyx, the goddess of night.

Chapter 10 Living Well

1. Will your personal philosophy change?

No one passes through the eye of a storm unchanged. You cannot expect to experience chronic disease and all it encompasses without changing as a person. A few people I have encountered who are dealing with chronic conditions have not weathered the experience well. They have become embittered and irritable. They see only the negatives, dwell in the house of self-pity and do their best to remain miserable and see that everyone around them feels that way too. “I am being tested!” this person yells in frustration. True. And he is failing the test.

The majority of people I interviewed who have chronic conditions are also being tested but are working towards the highest grades they can get. They see themselves changing but recognize that it is for the better. And so, hard as it is to accept, and backward as it seems, they realize they have benefited in some ways by having the disease, the pain, the restrictions, the enormous changes it has caused in themselves, the people around them and their lives.

“When I’m asked ‘where are you now?’
I want to be able to say, ‘I’m in a state of serenity’.” Jocelyn

One of the most noticeable changes may occur in your thinking. Over time, your personal philosophy will change. Your philosophy of life begins with a lot of the teaching of the generations before you, your cultural and social paradigms and alters as you live and learn by experience. The experience of dealing with a chronic disease may be the catalyst for a great amount of change in your philosophy. It is often at this point that you reject many of the old teachings you have never questioned previously and begin to build a much more personal view of how you will live your life. I know I quickly grew to believe that life is too precious to be wasted. Each minute counts and should be lived to the fullest, whether I am sitting quietly absorbing fully through my senses, or running flat-out across a meadow trailing a kite. I also believe strongly the old adage don’t put off for tomorrow what you can do today. I recognize both our children have adopted both these philosophies. Here are some other changes people with invisible disease have made in their personal philosophy of life.
• It’s okay to be alone.
• Live moment to moment.
• Live how you think. Looking too far ahead is overwhelming and often moot.
• Let go of the concept of age. Choose to be around people you have more in common with regardless of their chronological age.
• Accept things aren’t perfect and you can’t always have what you want right away. Learn patience.
• If you think “no big deal, it could be a lot worse”, you can become the calmest person around in a crisis.
• Learn to put yourself first, and give yourself permission to do this.
• Don’t allow yourself to be swamped by emotion.
• Keep trying and don’t give up. Eventually you will find what you need.
• Look at living with a chronic disease as a challenge that makes life stimulating.
• Don’t let your troubles be the only thing with which you’re involved. Focusing outward eliminates feeling alone.Laughter is a great people gatherer and stress buster. Use it often.

 “Why not laugh at yourself? It’s healthy and doesn’t
make your nose swell-up like crying does.” Sylvia

Over four years ago I was amazed to find that my sunny, active life had turned into a nightmare from what I eventually learned was a chronic illness. And, since that time, I have continued to be amazed by the intensity and promise of pain and the paralyzing effects of fatigue, by the effectiveness of “strange” medicines and the ineffectiveness of unfocused effort, by the saintliness of some husbands and the loving concern of family and friends, by the skill and wisdom of my health practitioners and the skill and wisdom of the human body, by the exquisite unfolding of the human soul and the exquisite awareness that the wild dog of my nightmare has become my beloved companion. Now, she is walking beside me out of the nightmare into a life we had only dreamed of.

This statement by Diane says what so many of you will discover and try to share with others. However, few of us are able to identify so succinctly the trials of the flesh or express so eloquently the blessings of those trials. The one thing we do know is that there are many. Diane mentions some of these and the others I interviewed share more.

 “I made up my mind I’ve got it [heart disease] so make the best of it.” Robert

2.  Are there plusses in living with a chronic disease?

Over and over, I make the point that you will see many blessings have come into your life along with the disease that seems like an enemy. That riptide of disease that seized you and sucked you under has made you stronger, purer and has stripped you to the essentials. Your character has changed along with your values. Suddenly, you find you are a better person because living with your disease has taught you:

a) Increased compassion

You can’t spend days in the hospital watching the other patients around you without softening your outlook toward humankind. And you can’t sit in a crowded waiting room, registering the pain and impatience of other waiting patients without having a new awareness of them. Face it. With every experience you add to your personal resume, I bet there are a few more people in the world with whom you can identify. Until you’re sick, hospitalized, nursed, treated and left waiting for aeons, you have no idea what it is truly like, what people suffer through in an attempt to get better. Once you know, you can’t help but become more compassionate and look at everyone you meet with a kinder heart and a less judgmental mind.

Matthew: I developed a huge capacity to understand people’s suffering and feel compassion.

b) Increased empathy

Sylvia: There is no doubt in my mind that I’m a nicer person now. I’m a better person, more compassionate and empathetic.

c) Increased patience

Sylvia: I have lots of patience sitting in doctor’s offices because I make it a social occasion. I sit and chat with the people. I will wait as long as it takes because I’m just so happy he’s my doctor.

It’s a question of making an attitude change, like standing at the prescription counter. How you feel in your head isn’t going to have anything to do with how fast you get the prescription. So you might as well relax. I know I need their services, and I need to keep a good relationship with them.

d) Increased tolerance

Sylvia: I say to myself “how would I feel if I was in their shoes? I’m not as judgmental and rigid.

Carrie: It bothers my daughter when people and the children look at me and they have no understanding of why I’m shopping from a wheelchair. To my daughter this is normal and to them it’s unusual. She asks,” Mom, doesn’t that kind of bug you?” I answer, “No, not really because they don’t understand, and you can’t understand that because you’ve been brought up with it.”

I made a huge leap forward in this area. Before Crohns, I judged people instantly, usually coming from my Type A perfectionism. If they didn’t do it fast enough or well enough I gave them a negative rating. With the experience I gained from dealing with Crohns, I learned to look beneath the surface, to find the reason behind the behavior or action. Now, I try to guess what is motivating the person instead of judging them. I’ve learned my right or wrong is just that – only mine. It might not be the way the next person looks at the issue at all. I conclude there is no right or wrong, just different ways of doing something.

e) Increased humor

 “Laughing is my way of coping.” Naomi

Shelley: I have learned to laugh at myself. I will catch myself snapping – blowing everything out of proportion and I will look in a mirror and laugh at me throwing a tantrum.

BOOSTER BOX

An elderly woman from my church became a regular visitor to my home. She was a real dear, but felt ridiculous when her knees just couldn’t get her upright. I had to get my walker and hobble over to her and hold it so she could pull on it to get up off the sofa. We were both laughing because it was me, the woman with MS, helping the woman who’d come to visit me. It was a good moment. Carrie

Sylvia says she doesn’t use humor as a deliberate form of therapy, as in watching funny videos to get laughing, but Sylvia uses humor as naturally as the rest of us eat. She spices up her comments with a bit of wit, self-derision or light-hearted joking. She gives it as a gift to everyone, including me for this book. Sylvia has taken her humor on the road as an act, speaking to groups about her illness whenever asked. She wrings out all the emotions but always gets them laughing. For instance she tells me she has a standing joke with her pharmacist that if she hasn’t been in there by 5:00 p.m. any given day, then they better phone the hospital and check if she’s been admitted.

f) Increased appreciation of people

A large percentage of you soon learn to appreciate people at a much higher level. Whether it is a family member, friend or caregiver, you realize this person brings much to your life. You come to understand that people are more important than time, things or self (within reason – after all you’re a person too). You place greater priority on making time for the people in your life, and you show your appreciation of the things these people bring to you. In appreciating people openly, you become a good role model to other members of the community who have not been forced to learn the difficult lessons of chronic disease.

“Relationships are much more important
than the things we acquire with money.” Sylvia

When was the last time you did something spontaneous to show someone you cared, were appreciative, thankful to have them in your life, welcomed their company or thoughtfulness? When was the last time you complimented a stranger for good service, or looking nice, or being thoughtful? Most people suffering dis-ease close the lag time on these actions and increase the quantity of them. Partly this is due to the greater appreciation for life. You have learned by coming close to death, and somewhat it is because of your increased appreciation for humanity. It all comes down to the philosophy of living each moment to the fullest.

3. What new doors will this open?

I covered the new opportunities quite thoroughly in Chapter 8 Lifestyle Changes. However, here are some examples of changes the people I interviewed adopted that prove they are thriving despite their disease.

a) New Priorities

Naomi: We are so stupid when we’re young. I look back to when I was in my twenties and important people were passing through my life. But I was so tied up in the things I wanted whether it was being a mother, trying to get more money or a better job. I didn’t grab those people and say, “I want you in my life, you’re important.” I would now.

Melanie: When your health goes, unless you are very strong, you will never get it back. Prioritize what you really need.

b) New ways to contribute

 “I can do anything I put my mind to.” Lily

You can’t spend months or years being cared for by others without wanting to give something back. Most of you will have a strong desire to contribute once you are on the mend. The ability to enhance the lives of others becomes a big part of your lifestyle. Throughout this book you have seen many examples of this drive to contribute. Phillipa and Sylvia began support groups. Norm builds things that are needed in his community, like notice boards and benches, things that will stand as a testament to his willingness to give back. Many counsel others on a group or individual basis. Some share their experience through writing and speaking. Sylvia nurtures the medical care-givers that have been so good to her – providing them with all sorts of warm fuzzies. You too will find something you want to give back, whether it is extra love and time to your family once you are on the mend, or advocating for social change that will benefit others. Big or little, your contribution is an important part of living well.

c) New ways to influence

I know few people who, having learned a lesson through extreme suffering, do not want to pass that lesson on to the people they love, in the hopes they will learn it second hand and not through the same crucifixion of body, mind and spirit. To this end, many of you work to influence your children, spouse, siblings, parents, friends, co-workers and the stranger on the bus. Your message might be anything you feel made a difference in your life. For example: for a healthier body, drink green tea, or always ask for a second opinion before undergoing an intrusive treatment. When I left the hospital the third time, I started to teach my children the benefit of deep breathing. I wanted to influence the way they dealt with stressors for the rest of their life. By expressing positive attitudinal philosophies around dealing with the upsets they encountered, I was able to help them to become more proactive. They both handle their stressors better than I did then.

Many family members are influenced to change their lifestyle because you introduce what you learn into the family plan. For instance, Susan’s husband and son have both become vegetarian along with her – that’s what she eats and cooks when she is healthy enough to stand in the kitchen. They support her in this. I learned that I could only find the peace and spiritual grounding I needed in a rural setting. My husband thus lives in the country with me. Hopefully, he will benefit from that influence and be more at peace and less stressed because of it.

4. Can you feel really alive?

Helen Keller believes so. She wrote, “The marvelous richness of human experience would lose something of rewarding joy if there were not limitations to overcome. The hilltop hour will not be half so wonderful if there were no dark valleys to traverse.”

When you’ve gone through the dark night of the soul, or the Biblical valley of death, you find that nothing is more precious to you than life. You grab it with both hands and live it to the fullest.
Forty years plus after spending months in hospital, undergoing multiple surgeries, almost dying twice and considering suicide many times, I thrive. My life is filled with the many things I love, and not just the sedentary pleasures like writing, reading, meditating, but with activities that demand a lot from me physically – downhill skiing, kayaking, camping.
I draw energy from nature, and when I am outside hiking a hill or swimming in the river, I know I am putting positive energy back. Finding that state of brightness, goodness, giving that you feel when you are living your life well, is a constant commitment to what you believe, to how you want to be, to what you want to put out into the world. I strive for it every day. When I am singing as I work, when my heart feels it will rise like a hot air balloon into the stratosphere, when I am bursting with gratitude, I know I am living fully. I am living well.

Melanie: Whether I would have committed suicide without that intervention I don’t know. I always said I would never do that to anybody, but at that point I was so low I didn’t care anymore. When I came through it I wanted to live so badly. That is my main focus now – wanting to live.

Once you have accepted your limitations, adjustments automatically follow. You are probably living a life more fully than you did prior to your illness (by that I mean a life of more value to you), because now you recognize that you have a choice. You can make each moment count for something or continue to waste time until it’s all used up.

Henry: I still take on new challenges like mountain biking or rock climbing. But I climb to get to the top to see the view and experience the excitement of that moment. I no longer climb to prove anything to myself. It is more of a quality of life thing.

Phillipa: I look for things about which I can feel passionate, because passion is an important part of who I am and without it I would be half dead. Looking to incorporate that joy, or to release that joy, because I believe it is inside me. It needs to be released so that it can spring up and imbue every action, every word and every thought. Joy is an important part of me and must be made available to other people.

5. Is there abundance in your life?

“I have been given so many gifts I want to give them away.” Melanie

Shelley: I read in Simple Abundance by Sarah ban Breathnach that before we go to sleep we should write down five things we are thankful for. I try to do this nightly, but find when my SAD is worse, sometimes it’s really hard to think of just one thing. Then I will have many flow off the pen onto the paper and that is a good indication that I’m in a great space and thriving.

Naomi: I’m very thankful that I have many people in my life because they’ve helped me be a better person.

Melanie: I feel gratitude that I was able to work that hard. I feel blessed that a woman my age could do accomplish what I did.

As long as there is breath in your body there is potential for beauty, love, joy and hope. You choose the quality of your life by your attitude. If you see your chronic condition as just another challenge, you will face it with the same initiative and find creative solutions for it as you would any other. When you do this you choose to live well.

As I conducted the interviews for this book, each person I talked with demonstrated such courage, such grace under fire and such determination to not just go on but to constantly better themselves that it inspired me afresh. Your limitations need not hold you back but can push you in new and exciting directions. If we show the same courage, grace and determination as the people who contributed in this book there is no doubt we will thrive.

Life is a blessing on each one bestowed,
Blood feeds our body, God’s breath fills our soul
Sparking our mind and our heart to extol
We exalt in each moment of life. M

I want to leave you with this beautiful story, shared with me by a partner of a man suffering from MS. He has not given up his love of sailing even though he is long past the invisible stage of his disease and is dependent on a wheelchair for mobility now. He has found a new way to get around the obstacles, to do the things he loves – to thrive.

Victoria: “I was down in Florida with the disabled sailing group, and each day I was at the docks helping people get the boats rigged and off to sea. Some of them are kids that have been paralyzed from diving and motor accidents. There are some that do sip-and-puff, actually operate a boat by blowing into a tube. There is a great deal of activity until all the boats are out. I was engrossed in helping, then slipped back to the car when my partner sailed away from the docks. I came back later to leave his lunch on his electric scooter. I looked out and there was the dock covered with empty wheelchairs and scooters; and the boats all sailing toward the horizon. It looked like the Second Coming, like they had risen and been released.”

YOUR CHALLENGE

1. Keep a gratitude journal. Write down everything for which you are grateful – big or small.
2. Think of a new way to reach out to someone. Implement.
3. Surround yourself with sensory stimuli. What can you introduce into your life that smells good, looks good, feels good, tastes good and sounds good?
4. What lesson is important for you to pass on? Tell everyone you meet.
5. Is there a place you can make a difference? How? Take action.
6. Make a collage of all the things you consider blessings. Hang it where you can see it.

 

I hope the wisdom and advice these contributors gave so freely and well, helps you realize there is so much more in you to give to life. Live fully.

Chapter 9 Your Support Team

1.  Who makes up your support team?

It should become obvious in the early stages of your disease the people around you are unique individuals. Each has strengths and weaknesses. It would be silly for a Hemophiliac to ask someone that faints at the sight of blood to be part of her personal care team; on the other hand, they might make a great chauffeur for someone with a back injury.

If you put together the best team possible, to support you in every eventuality, you must listen to your inner voice and obey it. You must find the people that calm you, that stimulate you, the people that handle the practicalities. You must reach out to the person who can meet a specific need in you. If you choose the right gifts from the people around you, it will produce a balanced and effective team. A balanced team takes care of the whole person – body, mind and spirit.

Your support team will be a combination of many people. You will probably draw it from the following sources:

Spouse or partner, parents, siblings, children, relatives, friends, church members, school, support groups, medical staff, community, workplace, clinics, and volunteer organizations.

a) An ideal team

In my case, I spent many months in hospital (about 80% of the time from 1979-1982). When I wasn’t in the hospital, I was convalescing at home. My family each began to mean something different to me, depending on their strengths. Here is a description of how they broke out.

My husband: Met my practical needs like paying bills, caring for children and home, providing transportation. His strength reassured me. He gave the best hugs. He was my continuity and security.

My mother: Met my spiritual needs. She inspired me to keep striving, brought me great reassurance and comfort through her presence.

My older sister: Gave me hands on care. She would be the one who said, You’d feel better if your hair was washed.” “Let me help you change your nightgown.” “Here is a new lotion to try – let me rub your back.” I never had to ask. She intuited my needs. She is still the one to say, “You’re tired, sit down.” “You’re stressed, how are you going to cope with it?”

My younger sister: Motivated me. She’d show up with a crystal that she guaranteed would improve my healing, or a motivational tape that would get me in the right frame of mind. When I was almost too depressed to keep fighting for life she would fly in and cheer me into rallying. She is positivity personified and makes me believe I can do anything.

My daughter: What healing hands she has. She has only to touch me and I feel immediately calmed. I can feel the warmth from her running through my body. She is my laughter, my sunshine.

My son: Became a source of metal stimulus for me over the years. His accomplishments gave me something to focus on and his philosophy something to learn from.

My brothers: Each supported me in a passive way, a telephone call, a visit. They let me know they cared and were there to be called upon. My younger brother prays for me. My older brother counsels me.

Friends/Neighbors: They divided themselves into all sorts of wonderful givers: The bakers, the babysitters, the foot rubbers, the readers, the distractors, the chauffeurs, the comforters and the entertainers. They were and are invaluable.

Bosses: At the time, both bosses were Anglican ministers. The first offered me prayer and an opportunity to build self-esteem again. The second offered prayer and energized me more than anyone else in my life.

God: By the third year of my disease I came to realize that my greatest support came to me from my creator, and the belief my body was designed to heal itself, if I kept body, mind, spirit in sync. As you can see I was, and am, truly blessed by the people around me. Those people were there because of my lifetime investment in them. They are your most valuable resource. It is never too late to start to collect people who enhance your life. You need these people on your team.

2.  What are my support needs?

a) Help not Intrusion

Chronic disease is about inconsistency. One day you are going great guns, the next you can barely move. In my case with both fibromyalgia and Crohns and hormone changes I can become really unfocused mentally. My short term memory takes a nose dive. I’m distracted, my speech jumbled, my handwriting illegible. When I catch myself in this space, I need to ask for help. This happened several times when I was writing Smart Women with Barbara Thrasher. So I’d say to her, “I need you to edit everything I write today because my mind is in meltdown.” I knew I was covered and could relax and complete the job. She knew what she could do to help.

“Asking honestly is modeling good behavior.” Maxine

There are many times when you don’t want help. This is typical of a Type A person.

Lily: I don’t want somebody doing something for me, or assuming I couldn’t handle the job.I have to feel like I’m in control of me and I have to be independent.

I happened to be at a potluck dinner with Lily. I went into the kitchen to help with dishes and she followed me in a picked up a dishcloth. Her fingers were twisted backwards with rheumatoid arthritis, her hips, feet all have been distorted. “Are you okay to do this?” I asked her. “Sure thing. I like to help,” she said. We continued to work together and visit. At intervals, three other women came into the room. I watched while each one went to great lengths to persuade her she wasn’t capable of helping with the dishes. One even tried to wrestle the cloth out of her hands. These women truly thought they were being helpful – they were caring, kind people. They did not realize how demeaning it was for Lily to be treated like a child who didn’t know what was best for her.

In order to prevent this from happening again, Lily needs to establish in this closed community her ground rules. She needs to say, “I will ask you when I need help, otherwise please don’t assume I do.”

During the times when my brain is working well, I don’t need help and would resent somebody taking over my work. This allowed me to understand where this woman was coming from. But how are those around you supposed to know when to do the work, when to offer to do the work, when to back off, unless they can rely on you to ask for help when you need it? The first time anyone offers to help you put your ground rules out for him or her. Now you both can get on with your lives. Sometimes people don’t understand that when you say, “No thank you.” to something they suggest, you’re not just being stubborn. You have carefully weighed the amount of stress against the amount of gain. With the best of intentions, they might be stomping all over your comfort zone. You are dealing with problems they can’t know, unless you help them to understand.    

If people do not seem to hear you when you set out your ground rules, and continue to attempt to support you according to their agenda, they are not the right people to be on your team. Faze them out wherever possible and replace with people who are willing to play by your rules.

Ray: My spouse gets upset when she sees me taking the nitro. I went for a walk with her the other night and sprayed my nitro before starting. Her eyes got big and she looked worried. To her it’s a show of concern, but her fear puts more stress on me and leads toward more angina.

Henry: When I start losing weight my wife worries a lot. She asks me about it and urges me to eat or see the doctor. It’s not quite invasive, but it is not helpful. When I know she is worrying, I worry and that causes me more stress.

Carrie: I have a friend who wants to take me for outings. If I don’t know what is there in the way of ramps, washrooms etc. it is so overwhelming that I wished I stayed at home. “Where is the washroom?” becomes so important that the anxiety takes away from the enjoyment of what you are doing.

b) Potential for conflict 

Supporters too, particularly if they are very close to you, may feel that people are intruding rather than helping. You may be caught in a situation, where one person on your team is in conflict with another who wants to help. You may have to point out that this is an extremely trying time for the Supporter as well as you. His/her perspective might be skewed by all sorts of inner conflicts and emotional baggage. If you wish to have both persons on your team, you need to let each of them know they are needed by you, and ask each supporter not to rebuff the help offered by another.  

• Sometimes there is dissent 

There is an old movie cliché of all the relatives gathering at the bed of a sick person because they want to be included in the will. Most often, what is happening if you find yourself drowning in loved ones is that they have been shocked into the awareness of losing you and are trying to show they love you. A show of love is a great antidote. What is poison is the family competitions that can spring up around you. You might find yourself like the wishbone of a chicken, pulled between two people who are both insisting on cooking your dinner, tidying your bed, looking after your children, bringing your work home for you. They see it as an expression of caring. Underneath is a desire not to be outdone in the “love” department by someone else. It adds stress to every situation. Have them stop it immediately.

• Sometimes there is harmony

Ken: I never felt my wife’s parents were intrusive in helping her and providing health care support. We have a good relationship. Each of us does what we can to make her life easier.

Take a firm stand in organizing your team and delegating tasks. Remind them that the common goal is making your recovery as smooth and stress free as possible. You will create an environment of cooperation and harmony.Often the diagnosis of a disease is something that brings people together with a common goal and creates harmony where there was little in the past. Take advantage.

c) Family members

Family members are our first line of defense against the feeling of vulnerability and powerlessness we often feel because of our disease. As we lose our independence, in certain areas, whether short term or long, family members pick up the slack. If your arm is weak someone becomes your hand, if your eyes are dim someone leads the way.

“I think that knowing what is needed is more

of a family issue than a personal issue.” Megan

What family members are on your team? What gifts do they bring? 

• The ideal spouse/partner

Sylvia: My husband listens to me and helps me come up with solutions. He puts time and thought into it. He says, “I think we should come up with an extra $100.00 a month so you can take that new drug, because it’s on sale now.” He doesn’t push me to try everything out there, but if he knows I’m interested in something he says, “If you want to do it let’s find a way for you to do it.” There are times, when at my request, he will call a doctor and discuss things with him because often a doctor doesn’t treat a woman the same way. If I ask him to do something or handle it for me, I know he will do it diplomatically, decently and with class. If I have been able to make the meal, we never leave the table without him giving me a compliment. He believes in me. If I tell him I’m in pain or I can’t do something, he believes me. Sometimes the doctors have made me cry and he listens and consoles me, but he doesn’t pick up the phone and come down like a hothead. It would be stressful for me to endanger the relationship with my doctor. If he needs to take off time to get me to the doctor or appointments, he says, “Work is not as important as you.”Henry: Good support is coming home totally exhausted and being able to rest and not do anything and have your supper made for you. Normally, I’m the first one home and I look after the dog and cook supper, but it’s a tremendous relief when she handles it and I can sit down in an easy chair, and know I don’t have to make any further effort this time.

In my case, my husband saved my life. You can’t get more ideal than that. He received an emergency call saying I was hemorrhaging badly. He left work, flew a corporate plane to the rural grass strip near our summer cabin, and flew me back to the city, where an ambulance raced me to the hospital just as I went into shock from loss of blood. A chronic health condition puts huge stress on a relationship. If you are fortunate enough to have your mate hang in there with you consider yourself truly blessed. Your spouse is in the twenty-five percentile range of those that vowed, “For better or worse,” and meant it.

• Sharing the chores

As you adjust to your chronic condition and arrange your life around it, so does your spouse or partner. Together, the men and women I interviewed have come up with workable solutions for the everyday chores that must be done. Here are some of the ways they share the work.

Ken and Carrie: We do the dinner dishes together all the time. I’m not there for lunch and breakfast dishes are minimal. Every Sunday is dust and vacuum day. She’ll dust and I’ll vacuum. She gets the laundry into the machine and then asks me to fold it and put it away. I’ll do all the yard work. She likes to work on the flowers. She’ll go out in the front yard and sit down in front of a bed and do some weeding, but anything else is too much work for her. I do all the daily things like picking up the mail, paying the bills, banking, groceries. I don’t like doing the groceries. Carrie makes out the list and plans the meals.

Sylvia and Andy: My first husband would have criticized me if I hadn’t dusted in two weeks. Andy understands and lives with it or does it himself. If I say, “Making supper took me an hour and I have to sit down,” he just does the dishes without comment. Or sometimes I can’t do anything and I will jot down a list and say, “These are the things I would like to have done.”

Martha and Henry: I take on more responsibilities around the house when Henry gets tired. Generally he does the majority of the chores. I took on more of the childcare for several years. I take the financial pressures off of him because I’m the accountant of the family. It makes me feel good to be able to remove that stressful part of our life.

• Putting time back into the relationship    

As well, there were many other things that caused friction, disappointment, withdrawal, confusion and frustration for both of us. Do any of these sound familiar to you?

“I didn’t get the attention and love I felt I deserved.” Adam

• As time passes and your spouse becomes more exhausted and stressed from her/his job, the childcare, worrying about you, and his other responsibilities, s/he too may become totally focused on self and what he is missing.

So with a 75% chance of your relationship crumbling under the stress of a chronic condition, it is important that you invest time, money, energy and love in this most important relationship. During my long bout with Crohns I was focused on my next tough decision and much of the time, survival. My husband, who was doing so much for me, was on the list somewhere below: me, the two children I felt guilty about, my mother and sisters who provided comfort, my community who I had let down, my boss who I was letting down and our two Siamese cats who had to be fed no matter how sick you were.

• My lack of ability to be spontaneous around outings and travel.
• The decrease in our social life as a couple.
• The deterioration of our sex life because of my hang-ups and pain.
• Control issues about almost everything.
• Money pressures caused by the cost of my health care needs.
• Exhaustion for both of us from carrying too much of a load.
• Depression for both of us that it was a never ending situation.
• Emotional damage caused by my reactive tirades against what was happening to me.
• His increasing emotional withdrawal that left me feeling abandoned.
• Loss of freedom for the care giving spouse.

You can see why communication between us was of prime importance and is even more important today. I don’t know how he did it, but Den supported me in every way for the seven years it took for me to get back a partial life and for the years since when I have had many new challenges to deal with. It is a testament to his strength, commitment and compassion that we are still together.

Matthew: I tried to share with my wife, initially. I became self-absorbed and introverted. I don’t know why, and I think that was what led to the breakdown of our marriage. I sort of closed-off from everybody. It was after my transplant. I am positive now that it was partly the result of some of the drugs I was on, because depression is a side effect of quite a few of them. I knew it was hurting my relationship, but I just couldn’t express what was going on. The best I can describe it is being in thick, syrupy water … everything moving in slow motion. Even now it is hard to share this. I wouldn’t call it living. It was more existing at the time. I was sleeping 16-20 hours a day, but it wasn’t restful.

What forms of communication will help you and your spouse or partner empower each other?

• Schedule time away from the rest of the family to be together. It doesn’t have to be a exotic, expensive trip, but a weekend at the cabin where you focus on each other.
• While in the hospital you can write notes or phone to leave little messages s/he’ll get later, to show your spouse you are thinking of him/her with love.
• Visits from your spouse are wonderful, make sure the conversation is two way and about both of you.
• Share your fears around intimacy with your spouse, what will hurt, what you would still enjoy, how you feel about your body. Ask him/her to share how s/he feels about intimacy with the changed you.
• Talk about the emotional backlash of the disease on both of you – allow each other to vent without taking it personally.
• If one or you is experiencing long term emotion such as anger or depression, you may need to seek the counsel of someone who can get you both sharing and searching for solutions together.
• Schedule a date night at home that is inviolate from other engagements.
• Share reading material that expresses well how you are feeling, or what is going on in your life with your spouse or partner – ask them to read it so they can understand better.
• Both partners might keep a journal of what is happening between you during both good and bad times and agree to read to each other’s for better insight.

e) Add friends

When Phillipa was diagnosed she went about dealing with her disease, work and family, but became steadily more aware that something was missing. Simultaneously, she began to push for a new home in a new location. Later, she could identify that this home was not about material gain but about getting an important need met. She did not feel supported by the neighbors where they were living at that time. She had only superficial friendships there, and she realized she needed much more to support her once she was diagnosed. Moving created a fresh new start for her. Friends are invaluable and we find them in the least likely places and in the strangest ways. You can never have too many, so keep yourself open to recognizing the people who can become your friends and part of your support team.

Sylvia: I remember relying so much on my friend. We worked so well as a team. If I was floundering I could count on her to dive in and pick up on it. So that was a great stress reliever, having her around, and believing in her ability to read me in situations. I also have a couple who are the same age as my parents. She is great back-up. She’ll keep a daily check-in with me when I’m going through a bad spell. She always does or says something to brighten my day, like, “Hi sunshine, how goes it?” She keeps me in touch with the world and reports back to other friends about my progress. She is well informed and so we can talk medications together.

Matthew: I get support from a group of guys. They catch me at a weak moment and I will share with them. It helps me to know that they are there for support if I really need them. My one friend hates hospitals so I was really impressed when he visited me in one. We don’t initiate serious subjects, but sometimes they pop up in the middle of conversations. I spend time with them to escape from bad thoughts and depression.

Good friends understand that sometimes support means just showing up so you can vent. Naomi told me that Sylvia doesn’t want her council or advice. She just wants to be able to say whatever she really feels without being judged.

One of my friends was a retired Registered Nurse. She agreed to give me my monthly Vitamin B injection so I wouldn’t have to do it myself. I had tried, but it made me so tense it added to my stress. I could go to the hospital for it, but that was a waste of time and also stressful. A quick jab and a cup of coffee with a friend seemed like the nicest way to go.

f) Add community

• Workplace  

If you do communicate your health problems to a person at work and don’t want it to become common knowledge, be sure to say up front that this information is confidential. You may fear pity or a harsh judgement from a fellow worker, so it is your right to protect yourself and maintain your privacy. However, I have strong feelings about withholding this information from a prospective employer. No it’s not mandatory for you to share your health problems. But it is fair. This person should have a clear picture of what you are bringing to the position before he or she makes the decision to hire you. People I interviewed who included this information in a job interview still got the job. Maybe hiring an honest person was more compelling than the possibility of you asking to take some time off in the future.

If you are already established in a job, there will be several reasons you may want to communicate to your employer and fellow workers that you have an invisible disease. You may want to make a claim on your insurance. You may need extra time to finish a project, or for someone to help you with your work for a short period. You might have to set up a schedule at work that includes a weekly appointment for treatment, or take time off to undergo tests or surgery.

• Schools 

If you are a young person still in school, or if you are in university or taking continuing education, personnel in the school should be informed of your condition and what will result. Your parents may need to ask for special monitoring for you, or you may need to let your professor know you will be having further surgery and will miss class. If the school personnel are informed of your special needs, things like bathroom privileges, breaks for insulin shots, seating changes, and diet considerations can all be taken into account and dealt with. The teachers and heads of your school generally display an empathetic, common sense approach to problem solving. Parents might wish to request special counseling for you, if you and your team thinks it be of benefit. Definitely, the school counselors should be informed of the situation.

•  Public disclosure 

If maintaining privacy around your health is an issue to you, this is a big concern. I remember receiving a letter in 1991 requesting me to be tested for AIDS, because all of the transfusions given me between 1979 and 1986 (and there were many of them) weren’t screened for this disease. I was horrified. I didn’t want anyone to know I had to be tested for AIDS. Even filling in the form my doctor gave me, with a code name, meant that several people on staff already knew who I was. The idea that my privacy was so threatened was of bigger concern to me than the disease. Of course, being a blunter, there was no way I had AIDS. And thank God, I didn’t.

• Your need for privacy 

You’ve all watched enough TV shows to know there is a way for anyone to get information on you. With everything on computer these days we feel especially vulnerable. If you have disclosed to your employer that you have a chronic disease that information is probably on your file, and may in time be seen by a processor, receptionist, or secretary. Any one of these people might overlook your right to privacy and share your condition with others. Let’s be realistic. It happens and lives have been ruined this way. The bottom line is you have to weigh your need for protection within your community and workplace with your need for honesty and support.

3. How do your communicate with your team?

a) Choosing not to communicate

Shelley: I don’t pass on info, because I still don’t admit to having SAD. I see having SAD as a weakness and blame myself for it, even though the medical people say that’s not so. But I’m not going to tell others I have a weakness or that I’m weak. I don’t want them to treat me differently or perceive me in a new way. I don’t want them to think I can’t handle the responsibility of that job. I need to handle the responsibility to feel good about myself.

Shelley is not alone in choosing not to tell others about her disease. The disease or your reaction to it may create a huge barrier that you struggle for years to break through. It is an instinctive first reaction. I remember after my ostomy surgery I felt desperately alone. My body had been altered forever. None of my family or friends could begin to imagine the changes in my life – physically, mentally and spiritually. I wanted to share so they would understand. But the changes were based on the physical damage and I couldn’t bear to put those images in their heads in case they found me repugnant and rejected me. All sorts of fears keep us from communicating about our disease.       

When you choose to keep your chronic condition from others, it sets you firmly in that grey zone created by an invisible disease. Because her co-workers and friends don’t realize she is sick, Shelley will always be working against herself, trying to perform at a level they expect and of which she is incapable at the moment. She will push herself harder to appear normal, and in doing so cause herself greater stress and exhaustion, depleting her immune system further. She will feel cut-off, frustrated and helpless.

Matthew: I remember my diabetes caused me to always be centered out. I had to have an afternoon snack and morning snack in school to keep my sugar levels even. Instead of letting me eat it quietly at my desk, my teacher made me get up and go to the washroom, so everybody knew. I remember it really irritating me that everyone’s attention was being brought to how I was different. As an adult I keep my disease invisible so I don’t stand out from the crowd, unless I want to. We all want to consider ourselves part of the group.

Robert: When I was walking with someone, pushing too hard I would step back and take my Nitro so they couldn’t see. It embarrassed me to know I had to take the Nitro. It made me not normal.

Gail: I have close friends but I don’t know if it’s my own attitude or they’re just the type of friends that don’t like hearing about this type of thing. They quickly change the subject, saying something inane like, “Well that’s too bad.” It makes me feel like I’m whining or feeling sorry for myself. It’s hurtful. It doesn’t seem important to them. So now I don’t bring the subject up. I always put a good  face on when I’m with other people.

By not telling his friends he has diabetes, Matthew continues to expose himself to the temptation of food, drink and activities he knows will harm him.

By hiding his condition from his walking pal, Robert is not accepting his situation. In order to adjust, he needs to change his attitude. The good news is that Robert did learn to say, “Slow down, you’re walking too fast for me.”

And Gail is second-guessing her friends, letting her own feelings of inadequacy speak for them. In time, she must learn to ask, “Does it bother you if I talk about my disease? Why? She might not like their answer, but at least the next time she feels so badly she needs to share, she’ll talk to someone who cares.

b) Choosing to communicate

And you definitely will need to share. Talking about your disease is part of the process of accepting your disease and then adjusting to it. If you share the challenges you face with your friends they will become collaborators rather than undermine you unintentionally.

Shelley: I told one co-worker who I spent a lot of time with when we travel. It was when I was really battling SAD and went on medication. She is very supportive and can read my moods. She can recognize attitude changes in me, or changes in the way I deal with a client. I won’t be as interested, in depth or passionate when the SAD is high. I’m more negative and she will be able to pinpoint that and know I’m not so good that day. I needed somebody to talk with about it.

Sometimes needing to talk is not rational. It’s not about communicating for understanding but just getting rid of some angst. So, if you know you are going to have to spill the beans or erupt, it is probably a good idea to choose wisely with whom you share.Confidants are a special and rare breed of people. We might have the closest friends possible, but an honest assessment will allow for their need to gossip, share a confidence with, “Just my husband.” or be so insensitive they don’t realize it is a confidence.

My husband was the best when it came to keeping my secrets. I can remember my rector arriving at my door, after a game of golf with my husband. It turns out the game was partly to minister to Den if he needed to talk, and partly to find out the true story about me. The rector informed me, his amazement quite apparent, that Den had told him if he wanted to know about me, he should ask me. And he did. Now there is good communication. My dear husband didn’t beat about the bush in protecting my interests, and I was able to divulge only what I wanted to share with my rector.You might be hurt or upset several times in the early stages of your disease by people giving out information you prefer to keep to yourself. You might hear a nurse discussing your condition with a visitor, a breach of etiquette indeed, but not uncommon. You might have a sibling inform your parents when you would have preferred to tell them yourself. Or a kindly intentioned person might discuss how sick mommy is with your child. You learn to choose with whom you share information. Possible sources of a good listening post or counselor are: your GP, your rector, a psychologist, a family counselor, members of a support group, a trusted friend or family member.

4. How do you ask for help?

a) Breaking through the barriers

In the beginning, it was impossible for me to ask for help. If someone did do something for me I felt obligated and would do something back that always had to be bigger and better than what was done for me. It was a terrible way to be and must have hurt many people who had given just because they were good people. After about my third hospital stay when I was too sick to give to anybody, and people continued to give to me I started seeing things differently. I realized that the gift I could give back was my heartfelt appreciation for what they had done, a kind word, a compliment, something to make them feel good. I recognized receiving with an open heart was the greatest gift I could give them. I observed it gave them pleasure doing for my family and me. I learned not to measure in dollars but in words, thoughts and deeds. So, instead of buying them something to thank them for doing something for me, I would send them a note that said how much joy they had given me. I’ve written a lot of notes in my life.

“It is really difficult for me to ask for help – about 8 on a scale of 1-10.” Shelley

I got better at asking for help – for things I needed when I was bedridden. When people asked if they could visit me and “What could they bring?” I would tell them what would really make me feel good instead of leaving them to guess. I wouldn’t play games of pretending something was the greatest if it was impossible for me to do. For example if a friend brought me a basket of oranges and I couldn’t eat them, I wouldn’t rave about the oranges. I would say how much I appreciated the thought and tell her I couldn’t eat them, but my children would really enjoy them. Then she didn’t show up with more oranges (that she knew ‘I just loved’) the next visit, perpetuating the lie between us.

When I was too weak to hold a book, I suggested to my neighbor who had expressed a desire to help me that reading to me would be a real treat. She came every third day and read for a couple of hours. It was special time. I am positive it made her feel as good as it did me.

At first I would lie for days feeling miserable because my legs scratched each other or my skin was so dry it itched before I’d ask for help with my grooming. I didn’t think a supporter would want to do something that personal and if I asked they would feel trapped, because they were too nice to say no. Then as my philosophy changed I asked my daughter or sister to put lotion on my feet or shave my legs. They were pleased to be told a specific thing they could do to make me feel better, and by showing them how much I appreciated it, how much comfort it brought I made them feel good too.

So, we have established that it is important for you to ask for help. This does not turn you into a whiney, complainer. Instead, it gains you the respect, admiration and cooperation of those around you. There are some constructive ways to do this.

“Don’t be the little boy who cried wolf. Keep your complaints to a minimum so that when you really are in trouble your team takes you seriously.” Sylvia

 b) Call a family meeting

Put everybody in the picture. People can’t help if they don’t know what is wrong, what is different, what you need and what they can do. Gather your extended family together, if possible and set out the terms of your illness in a matter of fact way that provides information without creating drama. This is not the time to go into the gory details, particularly if there are children present. You can offer good sources of information or make yourself available to share what you are comfortable to share later one-on-one.

Now is the time to explain what will be different in your life. “I have MS, my legs are really weak, I will no longer be able to play tennis with you, look after my niece, help you move.” “I have diabetes I can’t drive myself anymore, so I can’t take a turn with the car pool.” “I have congestive heart disease I can’t work as a firefighter anymore.”

Go on to tell them what your needs are. For example, you might tell them not to phone during the morning when your Home care nurse will be with you, or that a hospital visit longer than fifteen minutes is too tiring for you, or that you need a driver to take you to appointments.

When the offers for help start rolling in, communicate clearly, who you want to do that particular service. You don’t want your mother to help you get dressed if she’s always critical about how you look or your aunt to drive you if she’s wild behind the wheel. At the forefront of your mind must be keeping your day as stress free as possible. Make your choices wisely.

A shorter, more intimate family meeting should be called to deal with unexpected or imminent circumstances. For instance, you can get your husband and children together to explain you are going to have to be driven to a specialist in another city. You might want to discuss the fact that Grandma’s birthday is coming up and you don’t feel well enough to attend, how can we [as a family] handle this?”

 c) Practice preventative maintenance

Here is where you tell your loved ones just what they do to push your buttons. It isn’t pretty. But if you ignore the problem and it continues you are making a choice to continue to harm yourself

• Carrie felt badly when she had to tell her 12 year old son he couldn’t have friends over after school. They were too noisy to allow her to rest when she was ill.
• I remember asking my son not to come home at 10:30 p.m. and share the injustices of his Air Cadet squadron with me. I became too emotional and upset and then couldn’t sleep. I asked him if things were bad at Air Cadets if he could tell me about them the next morning.
• Shelley won’t let her mother give her practical help because it puts her on the defensive. “I think my mom is saying I can’t handle it on my own,” she says. It causes me stress.

d) Other ways you can maintain your health

Share with your support team the things that serve as stressors in your life. If they know you hate crowds, they’ll understand when you refuse to go to the Super bowl. If they know you tire easily when shopping, they’ll agree to tea a lot sooner. Explain to your team when you have the most energy and least. Tell them your likes and dislikes, what feels good and what doesn’t, what helps and what hurts more.

Robert: I love hockey games but crowds and noise stress me and trigger my angina, so I ask my companions if we can wait until most of the stadium is cleared out before we leave.

• Suggest things you need like massage, lotions, manicures, pedicures, haircare, physiotherapy, counseling, reflexology, alternative your health you can’t afford them. Often family and friends are frustrated by wanting to give you something that will help, but not knowing what will. Your honesty is a big relief for them.
• Don’t hesitate to tell your doctor, specialist, or any caregiver about your symptoms, concerns or changes in lifestyle. Ask your physician what you are able to do physically and what you shouldn’t attempt at this stage.
• Learn to recognize the triggers for certain symptoms – share them with your team and have everyone help you to avoid them.
• If a medication is prescribed but you are not sure how to use it, ask your doctor or your pharmacist. Ask until you have a clear picture of what to do, how many times

Robert: When I first got my nitroglycerine spray I was afraid to take it because they didn’t explain how. I would go for a walk and have to stop and rest every 15 minutes to bring my heart rate down. I did that for over a year before I asked the doctor. He said, “that’s not using nitro right, take it ahead of time.” I asked if I could become addicted and he assured me I couldn’t.

e) Problem solve with your team

You love camping. As a family, you have camped together for years. You still want to camp, but now you have health considerations to take under advisement. Just, as you all worked together to set up your campsite, so you can come up with practical ways with which to overcome your limitations. Don’t deny yourself pleasure, and your family your company just because you think the changes your health will necessitate will spoil everybody’s fun. Leaving a loved one behind usually takes a lot of the fun out of an occasion. You will be amazed at what can be thought up when a team puts head together and searches for new solutions. Each person brings a unique perspective to the table.

I found when I had a problem I used to go over and over it trying to get an answer, but I had tunnel vision and only saw one answer I didn’t particularly like. When I asked my husband how he saw a particular thing going down or an activity being organized he had his own slant and often it was more effective than mine.

You might need to come up with a way to afford a new drug on the market, a way to get to the bathroom when everyone is out of the house. You might want to cook dinner from a sitting position and your teenager rigs up a chair on his skateboard so you can slide around the kitchen. Who knows! You won’t unless you start seeing the people around you as valuable resources.

5. What happens when you don’t ask for help?

a)Feeling a burden

Everybody suffers. Many times I didn’t ask for help just because I felt like I was a burden. This feeling is often compounded by the fact, not only are you needing extra attention, you are not doing what you used to do for the people you are asking for help.

It is also cumulative, so that the longer you are out of action and need help, the more you begin to see yourself as a burden and the less you ask for help. I did silly things like letting my husband leave a room without asking him to stop and adjust my pillows or bring me the book I left in the other room, or turn down the TV. I could be uncomfortable for hours all for not opening my mouth that second.

I didn’t ask my son who was perfectly capable, and wouldn’t have minded for a minute, to get his own dinner. Instead I would lean on the kitchen sink feeling like my entire insides were about to drop onto the floor and peel the potatoes, because I was worried that he might think I was a pretty useless mom if I couldn’t even get dinner.

b) Being stubborn

When I received my back injury and the pain exasperated my Crohns, I desperately needed someone to drive me to physiotherapy every second day. The pain was so terrible that just getting in and out of the car was a trial. I didn’t consider asking my husband to take off time from work. He was carrying a huge burden already. But I could have asked a neighbor, someone in my church or phoned a service. Instead, I drove myself across the city while ripping strips off myself internally for not giving in. I’m sure I did myself harm a lot of times, or at least didn’t do anything to hurry the healing by my stubbornness. Today I look back on all the lost opportunities, to spend more time with another person in a meaningful way, if only I’d asked. And for the lost opportunity of a neighbor or friend in not being able to understand and offer a service that would have been greatly appreciated. The up side is that the more of us who go through these experience of feeling helpless during an illness, the more we can empathize and meet the needs of others when they go through it.

c) Withdrawal

Ask for hugs. Ask to be held, to be stroked or to have your hand held during a tough test or invasive procedure. Ask for touches. They are one of the most healing things a person can give you.

Often when you go through extreme illness you withdraw and send out messages that you don’t want to be touched. A little voice inside of you is saying, “I’m too ugly or icky, too guilty or careless to deserve to be loved.” “I did this to myself and it’s causing everybody else to suffer, so I should be punished.” You paste this mind-set onto all the people who love you and are trying to reach out, until finally they back-off because it’s the only thing they haven’t tried. When you start missing the outward gestures of love you and may read this as judgements against you, yet you brought the lack of attention on yourself. Be careful that you share from the first your need to know you are loved, valued and to feel that in the touch of those around you.

d) Refusal to take responsibility

Take ownership. For years if I had a decision to make I surveyed everyone I knew, even the mail deliver might be polled. Of course, you get as many answers as you asked people and end up back where you started, still wondering what to do. One of the things all my surgeries did for me was to help me to understand that no matter how many people are there to help you, no matter how many opinions you ask for that the final decision has to be made by you alone. Often it was a decision that made the difference between life, or death for me. You learn how strong you are when you make a tough decision, face the consequences and take responsibility for the final results. In some cases, all the communication in the world is nonessential.

Matthew: Both my younger brother and sister volunteered to be tested for kidney donors. I was glad they volunteered because it would have been way harder to ask. But I would have asked if it meant staying alive. My sister was pregnant and so was eliminated. My younger brother didn’t ask if I wanted him to do it. He just went for the blood tests. He was a match. I’m sure after the surgery he wished he hadn’t volunteered. It’s much harder on the donor than the recipient. I feel much closer to him for what he gave me. I can’t put my feelings for him into words. It has changed the way I think of him forever. I don’t know how you go about returning that type of giving.

6. What type of medical support do you want?

Your medical support team includes your GP, specialists, nurses, doctors, technicians, your doctors’ receptionists, the home care nurses, home care providers, physiotherapist, massage therapist, psychologist, nutritionist, and pharmacist. Putting together the right team is paramount to your well-being. If your relationship with someone on your team is stressful, you must replace him with someone who ensures in you calm and a sense of trust. 

a) Your safety net

I was in the hospital so long, so many times, it became my home. I was afraid to leave the hospital and to leave my nurses and doctors who had become my family. I depended on them and trusted them more than my real family for quite some time during the three years of crisis. When I was told I could go home I was terribly afraid. It was so beyond my comfort zone to go back out into the world after the safety of that private room. It is not surprising that you do not want to be parted from the team members who have taken care of you when you are most ill and vulnerable. A bond begins to stretch between you with the first sponge bath or medical report, and it strengthens with each IV, each syringe, each pill, each set-back and each Code Blue. They may not act like you want, do what you want, say what you would like to hear many times. They may not have the answers, but you are fairly certain if they don’t, no one does. They become the safety net under the swinging trapeze.

b) No harm no foul

The other side of this euphoric picture is the tremendous frustration of dealing with a medical team. Your only protection is information. Arm yourself with your medical records, your experience and every piece of knowledge you can pick up. Most chronic disease patients are classified as high maintenance. This is because we refuse to be treated like a faceless room number or as a disease rather than a person. We go from accepting everything without question, to asking nicely for what we know is right for us, to demanding that we be taken as a serious member of our own medical team. Time has taught us the intricacies of our bodies and their response to drugs, treatments, tests, environments and conditions. We have paid too often with pain, extra times in hospital, crisis and near death experiences because we were not treated as a unique person rather than another medical history. Because of the criteria I used to choose the case studies for this book, each of the people interviewed have lived more than ten years with chronic disease. Most of us are two-decade plus veterans. We are savvy, slightly cynical people. We are convinced that we are the best monitors of our physical, mental and emotional wellbeing. As Matthew put it, “I don’t come from the view that my parents did, that everything the doctors say is Gospel.”

c) Communicate with your medical support

Sylvia: I have trouble dealing with the doctors on the ward when you go in on an emergency basis. They describe dosages that I know won’t work for me. They don’t listen well, refusing to believe you know the best treatment for yourself. They want to follow the book. 

d) Being Heard

This happens again, if experience has taught you, you need certain treatments at specific times or you will pay. For example after one surgery I had a catheter inserted. This was not new to me, and I had already had a bad urinary infection by not having the catheter removed in time. This time I wanted to avoid the pain and fever that resulted. When I felt the first of symptoms, I asked the nurse to remove the catheter. Of course, she couldn’t do it without the doctor’s orders. The doctor was off because we were heading into a weekend. The resident refused to take responsibility or call the doctor. I was left with the catheter two more days. When my surgeon did his rounds Sunday evening he found me with a raging fever, incoherent and in terrible pain from – yes, you guessed it, a urinary infection that had become systemic. I am so wise to the ways of the world now, that if this occurred again, I would request my doctor to write orders for my catheter to be removed at my request.

• You may experience medical staff that is rude, abusive or demeaning. If you ask to be treated by another doctor or assigned to another nurse you are often labeled high maintenance and treated like prima donnas out of control.
• You might feel you are not being heard in many ways. One of the biggest frustrations is when your GP ignores your symptoms. The invisible diseases are difficult to diagnose and they have many overlapping symptoms. Your GP may not take your aches and pains seriously, and by ignoring what you are telling him or her cause your disease to worsen because you didn’t get help for it in a timely manner.
• I was never so grateful in my life as when my surgeon, Dr. Fred Inglis, made the decision that I knew what I was talking about when it came to treating my disease. When he included me as a member of my medical team I knew I was being listened to, and that I had some power over what was done to my body.

First time patients seldom have the hutzpah to stand up to a doctor, and so they learn this lesson over time and with many experiences of regret that they didn’t speak up. In my case, the first few times I wasn’t listened to, I was proven right. For example, I insisted that I was extremely drug sensitive and that I couldn’t tolerate the same dosage of medicine as was normally prescribed for a patient my size. I was ignored and given the average dosage, and several times suffered an overdose. Once my team was listening it didn’t happen again.

e) Recognize your limitations 

Be aware that you may not be a good communicator while you are ill. You might have short term memory loss and not be able to recall the information you need. Long-term pain, drugs or stress may cause this. For the same reasons, it might be difficult for you to organize information and state it clearly. You might be sending out confusing signals to your medical team. “Yes, I’m fine,” you say, when asked, trying to be a good doobie, and project a positive image. But inside you’re screaming, “I’m horrible, I’m in such pain, I’m nauseated, I’m scared.” They can’t help you, whether it is your home care nurse or your surgeon, if you don’t speak up. Take your time. Possibly write what you want to say down ahead of time. Be gentle with yourself, if you’re not as lucid or concise as you are used to being. Go back to Chapter 2 Diagnosis and re-read some of the suggestions for communicating with your healthcare workers.

• What is relevant?  

Matthew: I don’t have any trouble discussing things with my doctors. I think that is because I have educated myself. I also offer my own opinions and views, so I get more information from them in answer.

Consider what is relevant to your doctor. Does she really need to know that Great Aunt Bessie fell off a wagon and broke her leg when she was three? On the other hand would it be helpful for her to know that Great Aunt Bessie died from what they would now diagnose as colitis? Of course. If your medical team becomes accustomed to you rambling on about insignificant details, you can bet they will start to tune you out. They’re busy professionals and time is the enemy – to their schedule, to getting you treatment. Use yours wisely to ask relevant questions and pass on relevant information like changes in symptoms, new symptoms, changes in schedule or treatment that have resulted in changes to health.

• Are you holding back?   

Maxine: Recently I was scheduled for a cat scan. I arrived at the test centre and the technologist began telling me the procedure. When she said that a possible third stage might be the injection of a dye into my system, I asked her if it was iodine based, she replied “Yes.” I pointed out that I went into anaphylactic shock when injected with iodine, so they needed to be aware of that. I did this because twice I had had iodine based die pumped into me for a test and experienced an immediate swelling of the body and intense pain. It even frightened the doctors monitoring the test. The technologist took exception to my desire to protect myself and got huffy. When I began to discuss how we could work around this she just ripped my papers in half and said, “We won’t be doing it.” That left me with an cat scan that did not conclusively prove what it needed to, because she brought her mood to the table.

Even when you’ve learned the hard way that if you don’t speak up you might pay for a medical worker’s mistake, you may hesitate to protect yourself because you fear his or her reaction, if you speak up.

Be honest with yourself. Are you leaving out important information because you fear your doctor’s anger or don’t want to hear a lecture. For instance, are you a heart patient who has started smoking again? Are you a Crohns patient who is still drinking alcohol? If you leave your team in ignorance they will not be able to help you, in fact they could do you some harm, like prescribing a drug you can’t take with alcohol, and assuming its safe because you’ve told them you don’t drink it anymore.

7. What can a support group do for you? 

a) The process

Many of those I interviewed told me that there is a right time to join a group. There is a process of learning about the disease, adjusting to it and then becoming ready to reach out for more answers and validation. Joining a group does not lock you into a lifelong situation. You may not benefit from a group; though most people find that there is at least some short-term gain. The big thing to remember is that you will know if, and when, you are ready to try one out. If people are pressuring you to join a group before you are ready, explain to them that adjusting to your disease is a journey of many steps, and you are still working on the first miles of your trip and see ‘joining a group’ as a stop up ahead. You will not rush to get there, but you do know you will visit it in time.

Carrie: When I started in the group I was ready, so the fear of what I would learn wasn’t paramount the willingness to share was. I’d been diagnosed and treated for four years before the group started up. Earlier I would not have been ready to listen.

You may have solid reasons or niggling fears influencing you. Phillipa’s story demonstrates how much a support group can affect your emotions.

Phillipa: When I was diagnosed with Lupus it caused a great crisis for me, internally, around the concept of wholeness and perfection. Now I had a flaw that could not be corrected. Here was something that wouldn’t go away. I didn’t realize how vain I was until I started having difficulties with my skin. [Like other invisible diseases] with Lupus many of the blemishes and problems are on the inside. The skin involvement you can’t hide because it’s out there in bright red. That was difficult. It’s still difficult.I joined a Lupus Support group within nine months of being diagnosed. They were organizing through the hospital, so someone gave me a call and told me there was a meeting being arranged. I didn’t go to the first meeting because I was scared. But I went to the second meeting. By that time I had determined I would be more scared not knowing. I guess I was ready to confront a little bit. Why was I scared? I was afraid I was going to turn into a freak. I had read a book from the library. It was a good book, factual, calming and reassuring, in the sense that I was able to recognize that the kinds of symptoms I had were not severe. But at the time the kind of remedies they had for Lupus were cortisone drugs like Prednisone, and they talked about the side effects of it and people ballooning up. So I had a vision of being surrounded by Lupus patients ballooned up and disfigured. It was scary. It would force reality on me. I would be looking at myself some point down the road and I didn’t want to contemplated a future that would include that kind of disfigurement.

When I did take the step to get into the Lupus group I felt immediate relief, much as when I read the book. I looked around, and although I could identify the people who were on Prednisone because their faces were round, there were many people there who did not have round faces. There were no freaks. One woman whom I met who was much disfigured because of Lupus rash. I surprised myself that I would go and talk to her. I wasn’t so fearful that I wouldn’t confront her. Hers was an exceptional circumstance. She was stricken suddenly and viscously and nobody knew what it was so there was no ability to be able to treat her. She was a photographer’s model so the blow to her self-esteem and lost career was tremendous. I told myself, “If she can live with it, I can live with it too.” It helped me to put it in perspective.

“Invariably, I find my fears are worse than reality.”  Phillipa

Your decision to join a support group, and to stay or leave it eventually, will depend on several factors.

b) Monitor or a Blunter?  

• If you are a blunter you might feel a support group forces you to dwell on what is wrong with you instead of focusing on what still works, what you can still do. You may choose to use your limited energy on the activities and people that allow you to feel positive and fully alive.
• If you are a monitor you will most probably find a support group a rich source of information, comparative experience, anecdotal evidence and a reality check that helps you put your condition in perspective. You will come away from a monthly meeting feeling positive and energized.

c) Nurturer or an enabler?  

• If you are an enabler you are more likely to draw from the group what you can to strengthen yourself and move on, using what you have learned to enable other people to help themselves.
• If you are a nurturer you might welcome the nurturing “doing” support of another member. You may want someone who gives you the warm fuzzies you desire, helps with practical things like transportation, food and bathroom concerns, and never forgets to ask how you are. It is possible you will find within the group a person or persons whom you are drawn to nurture.

d) Leadership

• Enablers are often attracted to this role, because they can see a way to use their strengths. This is not a teaching role, or a nurturing role, though a good leader provides elements of both, often by adding people with these strengths to the team. If a leader is clever enough to poll the group for their needs and encourage a system for meeting individual needs, you will be more inclined to stay within the group.

• Quality 

Often your decision to remain or stay is based on the quality of the product. You might appreciate the expertise of the speakers or the scope of the newsletter. You might be attracted by a professional approach (e.g. meetings start and end on time, members are encouraged not to monopolize the conversation, and communication is clear regarding upcoming events). If the meetings appear disorganized and unfocused, you are soon going to look elsewhere for support.

• Friendships

If you do make the decision to join a group, there are several sources to find them in your area: your doctor’s office, your library, brochures in medical clinics, the Yellow pages, internet and word of mouth. If you come from a rural area, finding a support group will be harder. You may have to ask your doctor if he will contact another of his patients with the same problem and see if he or she will phone you. From there support can seed and hopefully grow.

Phillipa: Now some of my best friends are people I met at the Lupus support groups. It is a tremendous feeling to have this family out there, who I can talk to, and who are able to relate to me in a way that other non Lupus people could not.

If you are fortunate enough to find someone with whom you are able to share at a deeper level, this person may be the magnet that keeps you coming to the group. Here is a person who understands how you feel physically, can relate to the emotional ups and downs you go through and can speak to you in a way that truly helps. No matter how much a family member loves us or wants to help, only those who have shared a common experience can give you that sense of familiarity which brings some relief.

e) The negatives

Phillipa expressed a common initial approach to the idea of gaining support through a group. Are you afraid that in the people you meet in the group you will see horrific mirrored images of yourself in the years ahead? You might have the idea the group is made up of people who sit around whining and complaining. You might envision non-stop lists of symptoms and horror stories – each member working to top the last. Like Phillipa, you won’t know until you try attending a group. It takes courage. But finding courage to do a thing most often gives us the greatest rewards.I felt much like Phillipa when I first decided to attend a meeting of the Ostomy Association. I expected to be surrounded by older people because at the age of 27, I was quite young to have Crohns and to have had so much surgery. There were a variety of people present, some in wheelchairs, the majority older than me, even some that smelled. This was my big fear. Now I had this pouch hanging on my side, it could leak or fall off exposing everyone to the strong odor of my stool. Inside this plastic pouch was a turned back piece of my intestine that would make weird noises at the most embarrassing times. As the guest speaker began to talk to us a muted chorus of gurgles, growls and raspberry noises went on around me. Although nothing embarrassing happened to me, I felt tainted just by association. I attended the group for only a year, before making the decision not to go again. I had several reasons:

• The difference in the age gap between myself and other members.
• My refusal to accept that I wouldn’t be whole and Crohns free one day. Seeing all the other people with it made that a bit of a fairy tale.
• I prefer in all things to find my own way, whether it is researching, learning a new sport, or fighting to adjust to Crohns.
• Also I am a Blunter. The most effective way I deal with my disease is to get on with my life. When I sat in that room surrounded by other people with Crohns or colitis, whose conversation revolved around symptoms, treatment, restrictions and other problems, I was constantly faced with the fact that I had Crohns disease.
• As an introvert, I found the people sucked away my limited energy. I always went away slightly depressed and feeling negative

Carrie: Some of the things I was reading weren’t pleasant and didn’t necessarily pertain to me but in your mind, you think it does. But you can’t get caught up in that because then you’re not living moment to moment you’re living ten years down the road.

Matthew: I have joined local support groups in the past but found most of the members were older than me and were dealing with Type 2 diabetes that can be regulated by diet and exercise. With a lifetime experience of Type 1 diabetes, I had little in common with these people.

Sylvia: One of the ironies of belonging to a support group is that you are there because you’re sick. The group needs money to continue to support each other’s needs. You put on some kind of money raising activity and by the time it is over everybody is sick and you end up visiting each other in the hospital. You can joke about ‘who’ became the sickest! You’re looking for spouses or doctors to lead the group because all the members are too sick to do it. It’s hard to keep the group together.

f) The plusses

In Chapter 2, Diagnosis, I list the plusses of joining a support group. You gain access to the newest information on your disease, to expert speakers in the field, to others’ experience of dealing with the disease, and to the opportunity to give back some of the wonderful support given you. Of course, if we overcome our reluctance and fears, like Phillipa, we realize our imagination has ruled, and we’ve done ourselves a disservice.

There are many benefits to joining a support group. Phillipa goes away from her meetings uplifted. Phillipa is a monitor and wants to be fully informed about the total scope of Lupus and how it affects her on a physical, mental and emotional level. Phillipa quickly became a resource to her group and with others acted as a catalyst to begin a national support group. She used the information and experience she gathered to help many others adjust to Lupus. You too may find a positive influence, good role-modeling, and a raison d’être through joining a group of like-minded individuals.

During the year I attended the Ostomy Association support group, I was asked to become a hospital visitor to people who were waiting for surgery. I remembered the wonderful young woman who had taken the time to give me hope prior to my Ileostomy surgery and I agreed to take on this work. This is one of the plusses for me. Other positives in my own experience of group support:

• I gained new information on coping with Crohns that was not available through other sources.
• I met many brave people who served as marvelous role-models to me.
• I was able to put my condition in perspective with others who were worse of and count my blessings.Here are some from other people I interviewed:

Phillipa: I became the President of our local chapter of support group and then helped build a national association in order to provide support for the local support groups. I was President of it for many years. It helped me keep my focus out there in the world. I’m the kind of person who lives a lot in the brain. Like anybody going through difficulties I had periods of feeling sorry for myself. It was always helpful to talk to somebody whose disease was causing him/her more difficulties than I had. In a sense, it trivialized the things that I saw as my problems. So many people confided their struggles and pains and fears to me; it normalized the feelings I was having. I need to either share my positive experience or get information

Matthew: I joined the Canadian Diabetes Foundation. They put out a quality magazine with interesting articles with the latest research.

Sylvia: I’ve belonged to a Lupus support group in every city I’ve lived. If there were a group in this city I’d be active in it. I go in order to share ideas that I can’t get from my medical support team, like new techniques for coping with pain. We share things that work for us and might help someone else. There is comfort in knowing you’re not alone. My mother taught me there is always somebody worse off than you. You see this and compare yourself and don’t feel so badly about where you are. 

g) Contributing to your support group

If you have found satisfaction in contributing to a group, either as becoming part of the administrative team, a speaker, visitor or resource, the more power to you. Remember that life is change – even volunteer work. You need to stop and assess your contributions at intervals. There are several things you might want to consider.

• Your stress level  

Each time I hung up the phone after accepting a request to visit a new patient, I began to feel stress. I handled it by pretending it wasn’t happening, which means I sublimated my sense of anxiety. My guts immediately paid for my self-deceit. When the day came to visit, my adrenaline level increased with every step I took inside the hospital. Assailed by the smells and sounds I associated with pain, suffering, embarrassment, loneliness and fear, my external stressors increased.

Then it was time to confront the patient. A person preparing for surgery often asks for a lot of details of your own experience. You have to walk into that hospital room prepared to be honest. If you fudge your answers, they read it in body language, facial expression and tonal quality. If they decide you are hiding information from them they will assume the worse and your visit will raise their anxiety level rather than reduce it. Each time I forced myself to drag up all the relevant facts of my illness it put me back centre stage in that traumatic and stressful time. I found the visits were causing me internal stress, and setting back my own journey to wholeness. After five years, I made the decision to say no to hospital visiting.

• Doing the right work

I’m an enabler, not a nurturer. The job that lights a fire in me is helping someone with an invisible disease, help himself. In a hospital setting you are often restricted by rules, policy, family members, medical staff and timelines from encouraging a person to do what will most help them to recover quickly. For instance you may thing a series of motivational tapes will nudge the patient into a more positive frame of mind, but their tape recorder isn’t approved and therefore can’t be plugged in his room.

Gradually as I became older, my lengthy stay in hospital and multi surgeries moved into my past. I recognized that there was a bigger age gap between myself and the patients I saw, and felt they would be better served by having a younger role model visit them, one whose experience of surgery and medical treatment was more recent and up-to-date. I felt I could no longer relate to the younger person effectively.

• Your conviction    

Today, I enable caregivers and those with dis-ease on a one-to-one basis, and I speak to large groups of women entrepreneurs across Canada on the importance of Being Whole. This work is just as relevant as my hospital visiting. In what new direction do you want to turn?

I was the queen of PityMeCity for years. Now I am convinced “Pollyanna” modeling is as important as the actual message. Every word you speak or write can be negative and self-pitying, or positive, motivational and a source of hope. You can be a poor role model or a good one. In the long run, with the avalanche of invisible disease hitting our communities, it is the role modeling that will decide how our society deals with the growing numbers and urgency of the issues.

If you find yourself in a similar position, where the place you chose to contribute no longer feels right, don’t get caught up in guilt or the belief that you’re indispensable. Often by walking away from a position (even when there appears to be no one to take our place), we make an opportunity for another person of whom we weren’t even aware. We also free up the time we need to contribute in a new area – one that excites our creativity, passion and to which we are convicted. Gradually, I found a way to put a positive twist on the information I wanted to pass on.

Over years of dealing with Crohns, medical staff, treatments and hospitalization I became an authority on Crohns disease. I found it increasingly frustrating to hold back my views. Most often, these were contrary to the treatment being prescribed by the doctor, and opposite to the choice the patient had obviously made for herself. For example, I disagreed with the conservative, first stage treatment of cortisone drugs. In my experience, it was better to opt for surgery sooner; while you were still healthy enough to recover well. If you went through months on steroids the side-effects could cause you further health problems, weaken your immune system and make it harder for you to recover from surgery. As this was a subjective view point I managed to keep it to myself. I felt hypocritical in suppressing my conviction and concluded that if I could not support the treatment the patient had chosen I could not do my best for her.

A THRIVER’S ACTION PLAN

1. Make a list of the people you want on your team and assign them roles.
2. Think about the various ways you can best communicate your needs. Experiment with them and begin to use the most effective.
3. Ask each of your team members to tell you what method of communication best works for them. Remember to treat them individually.
4. Go to one of the meetings for a support group in your area to try it on for size.
5.  Is there a role you wish to play in supporting others? What is it? Implement it?
6. Listen to your tone of voice when you are talking to people. Do you sound whiny, demanding, or irrational? Catch yourself before it becomes a habit.
7. Always express appreciation for a Supporter’s contribution. A word of thanks goes a long way.

Now you have your support team in place, there is every reason for you to create a life in which  you thrive. 

Chapter 8 Lifestyle Changes

1. What changes are needed at work?

a)  Negotiating new terms

 

For months, maybe years before you are diagnosed, you may be struggling with the symptoms of the chronic disease attacking your body. Eventually this will affect your performance in the workplace.  You will reach several points when you need to request changes that will help you cope.

After many painful lessons in the school of hard knocks I have concluded I can only work a few eight hour days in a row before I am drawing on my reserve energy and getting in trouble. I had to accept that I could only work part time in order to create the optimum lifestyle for staying healthy.

• Sick leave

Suddenly you might be missing work repetitively, or in a pattern (i.e. by Thursday you are so tired you take Friday off). At first taking sick days will be acceptable to you and your employer. After all that’s what they’re for. But as the number of days and number of times you are off work increase it causes problems for your employer and adds to your stressors. Firstly, if you are conscientious you feel badly about taking so much time away from work. Secondly, there is even more pressures at work as you try to catch up after days away. It is not a situation that can continue long term. This is when it is necessary to negotiate with your employer. You might ask to work part time or request a lateral move to a less stressful position. You may ask to job share with someone else, or decide to take a reduction in pay and do a less tiring job. You might ask for time off to recoup your energy, or arrange to work at home and save yourself the time and energy used up commuting to work. To make the best choice for you, monitor the situation over several months. Recognize patterns of behavior, factor in busy times at work and take into account whether your condition is improving or becoming worse.

After two years away from her law practice in Boston, Kathy Rabin attempted to gain her career back. This is what she wrote.

“I tried to go back to work out of my home doing legal research and writing. My hope was that I could gradually increase my work activity and get off disability. I was not successful. I found once again that working compromised my health and my quality of life.

 Because of work deadlines, I was no longer able to listen to my body when it told me to rest. I had made professional commitments and had to meet them despite how I was feeling. I had to quit my physical therapy program because it left me too tired to work. Also, I became very isolated. Whenever I felt well, I stayed in to work and, when sick, I stayed in bed. My condition deteriorated. I experienced relapses of up to several months after completing big projects during which I was bedridden or housebound.”

•  Job hours

You will also need to negotiate time off for appointments, treatments and tests. It is important that you factor in travel time and build in a cushion of waiting time when you take your request to your employer.

You might wish to negotiate new job hours. You could suggest coming in later in the morning and staying later at night because you are not able to fall asleep until dawn. You could ask for fewer hours in your workday, accepting a cut in pay for lost time. You can negotiate the number of days a week you work or the number of hours per week, to take some pressure off of yourself.

• Performance  

If you are self-employed then you are probably going to have a lot harder time of it. A large percentage of the invisibly ill are entrepreneurs. You’re the worse boss you can have, because your business has and probably still is taking precedence over your health. When it comes to negotiating for time off or a lighter load, have the same compassion for yourself as you would show to an employee.

Shelly: I book [make an appointment with a client] a reason to get me up in the morning – so I’ll have a lot more early morning meetings and phone calls when SAD is worse –so that I’m forced to get going and that takes me on into the day. You can tell how bad SAD is by my kilo readings. When it’s bad I try to do my work by phone and minimize my driving. I’ll limit the number of cold calls I make because I know I’ll do a poor job of selling.

Your chronic condition will start to affect your performance and the standard of your work will drop over time. Even the most determined perfectionists can’t stand forever against sleep deprivation, anxiety, depression, pain, loss of focus, concentration and short term memory. When you realize your work is deteriorating, it is up to you to bring it to the attention of your employer and negotiate support. Certain tasks may be handed over to someone else short term, or you could request that someone check your work before it goes out. Your employer might decide your work is not up to the standard necessary and assign it to other employers. You must be willing to accept this present situation and work to make it as temporary as possible. There are new tricks you can use to keep your performance level up.

• Travel time

Shelly:  I limit the driving because I know it will cause me more stress. I limit face to face encounters because they cause more stress.

You may be able to limit your travel time by working out of your home, or make it work time by changing the way you travel (e.g. carpool or transit so you don’t have to drive yourself).

• Reducing stress

At the end of the day, Shelly makes a point of scheduling quiet time to alleviate the buildup of stress in her mind. Melanie, who had many irons in the fire when it came to working, began to eliminate her jobs one at a time until she reached a level she could handle. I’m generally careful to set realistic deadlines for my writing (I missed by a long shot on this book) but I’m using what I learned in “not sweating it” over the years to take the pressure off myself and set a deadline I can meet.

Henry:  Another trigger is when I have a whole bunch of jobs to do and I wake up tense thinking I have to do this and this and this. I’ve had to train myself to say I only need to do this or this, and the other things can wait.

b) Getting a job 

Matthew: I sometimes wonder if my diabetes hasn’t kept me from getting jobs. I always am truthful on the application, and then the guy may look at it and say, “I don’t want to have to handle the situation if he goes into shock or a coma.” 

c) Ergonomics

In 1990 the Americans Disability Act was passed requiring employers to make adjustments and accommodations for people with disabilities and chronic conditions.  As of July 1994 in the States, companies with 15 or more employers are required to follow the ADA guidelines in implementing necessary changes to accommodate these workers.”[1]  Although smaller companies are not forced to follow the guideline, many of them embrace the opportunity to enable their employees with disabilities to continue to work. In Canada these laws come under Federal Jurisdiction and comply with rulings set out in the Canada Labour Code.

Ergonomics is the science of customizing a workstation to the needs of the worker to provide the maximum degree of comfort, efficiency and safety. If you are presently working at a counter too high, sitting in a chair that angles uncomfortably or being forced to use a keyboard at the wrong height for your body, you are experiencing greater physical stress than necessary. It is in your own best interest to discuss ergonomics with your employer and co-workers and have your work area customized.

Presently, one of the key issues medical specialist and scientists are examining is the effect of long term sitting on workers. Several new studies show higher risks of heart disease and cancer in people who sit for extensive hours a day – such as writers. Should I be afraid? No. Moderation in all things drives my timelines. If I sit long hours, I find ways to break up the time, stretch, take rests and exercise.

d) Repetitive Strain Injuries

This type of injury is a common side effect of much of your work, as many of the tasks you do are repetitive. There are great books out there to help you assess your situations and apply common sense solutions to eliminate strain caused by work. There is also a wide range of inventions to assist you in reducing the strain you experience. Find out from your doctor what will aid you and implement.

2. How do you change what and how you eat for the better? 

a) Changes in eating habits 

• Eating for health

Your doctor is almost certainly going to recommend that you change your eating habits in some way. He might ask you to cut out chocolate, caffeine and acidic foods to eliminate some of the inflammation of arthritis, Lupus, Crohns and fibromyalgia. You might be told to go on a low fat diet to lower your cholesterol levels if you have heart disease. People with diabetes are asked to reduce their intake of carbohydrates and those with bowel diseases milk products, whole grains and spicy foods. Almost everybody is told to lay off alcohol – except for those with heart diseases. Studies continue to show that one glass of red wine a day is beneficial in lowering cholesterol level and removing plaque from the arteries.Changing your diet appears to be a great hardship at first. Some of you are being asked to give up your comfort foods, or the alcohol and caffeine you use to deal with stress. But do investigate this area for yourself. There are many good books out there. I highly recommend Foods That Fight Pain by Dr. Neal Barnard. It is a book that appeals to our common sense while at the same time giving great hope. It shows the dramatic differences that a change in diet can make to our health. For example Dr. Barnard describes work done by Dr. Dean Ornish in proving that heart disease can be reversed through diet. One group of patients with heart disease was placed on a typical low fat diet that any doctor would prescribe a heart patient. They were to choose skinless chicken and fish over red meat, quit smoking and try to stay active. The second group was asked to follow a vegetarian diet (eliminating all meat, fowl, fish). They were to quit smoking and exercise thirty minutes a day or one hour three times a week and do some type of daily stress management exercise like meditation, yoga etc. A year later each patient had an angiogram that was compared to his or her initial angiogram. In the case of those on the regular heart diet there was no change in arterial blockages, in fact some had grown. In the case of the second study group, the vegetarians had an 82% improvement rate. “They were actually starting to clean themselves out. This wonderful result was achieved without medication or surgery. Their blockages shrank simply by using vegetarian foods with mild regular exercise, stress management and no smoking. Their chest pain went away before the year was up, within weeks of starting in fact.” Barnard concludes. They also lost an average of twenty pounds each and felt more energetic than they had in years.

Barnard points out that both groups grumbled about the changes in their diets, but the vegetarian group learned to love theirs, while the heart diet group became more bored with theirs. And everybody grumbles about change initially. If you elect to have surgery or go on a cortisone drug rather than try dietary change your doctor will still ask you to change your eating habits in some way. Let us be clear. I am not advocating you try a vegetarian diet without going to your doctor.  However, this is an excellent way to work at self-healing while waiting for diagnosis. Who knows by the time you receive your tests results you may have already minimized the problem just by changing the way you eat.

• Eliminate Free Radicals

Free radicals are found in even healthy bodies. They are necessary for such jobs as toning our muscle mass. However, the concern is not to let an excessive amount of Free radicals loose in your body, because they do considerable harm. Free radicals are actually unpaired electrons that are looking for a partner. In their search, they bump into paired cells, damaging them. If you saw a slide of your blood magnified and you had Free radicals running freely through it, you would see that your red and white blood cells are actually misshapen from being in collision with the Free radical. Damaged cells are not able to do their job at 100% and so your body’s ability to heal itself is handicapped by an excess of Free Radicals. The more unpaired electrons there are, looking for a mate, the more damage is done. It is in your best interest to eliminate as many sources of Free Radicals from your lifestyle as you can.

 The Enemy –Sources of Free Radicals

Carcinogens                Pollution                                       Smoking

Alcohol                         Lack of exercise                           Viruses, infections

Allergies                       Foods (preservatives)                 Stress

• Add antioxidants  

Antioxidants are your body’s allies. They enter the body through food sources are processed and move through the blood stream, where they locate the Free Radicals, and wrap around them so that they cannot continue to harm other cells. Bound by the antioxidants the Free Radicals are then removed through your lymphatic system (the body’s waste disposal system).

Antioxidants are found in the following:

The Allies – Sources of Antioxidants

Vitamin C                                Vitamin E + Selenium                         Beta-Carotene

Evening Primrose oil             “Green” foods                                       Garlic

Grapeseed Extract                   Vitamin A                                            Zinc

“But where do I find all these sources?” you ask, possibly envisioning, like myself, yet more pills to take, more expenses. All of them are found in the foods you eat, if you make the right choices.  Following is a list of foods that will provide antioxidants to your body as well as some suggestions of other diet changes you should make in order to eliminate an excess of Free Radicals.

REQUIRED DIET CHANGES

Add                                                                             Subtract

Red/orange fruits and veggies                            alcohol

Green cruciferous veggies                                    caffeine

green tea                                                                   red meat

essential fatty acids:  flaxseed                               minimize poultry and fish

Alpha-linoleic                                                           minimize dairy products

Beans, nuts, legumes                                              minimize processed, starchy food

Soy products

Organic whole grains

Citrus fruits

Sea vegetables

Grasses

Leafy greens

Bitter greens

lots of PURE WATER

• Naturopathic remedies 

Echinacea is also a great booster for the auto immune system. Along with many other alternative medicines is a natural way to treat your body. Visit a store specializing in herbal remedies and read the literature available. Many stores provide a book that lists symptoms so that by looking for yours, you can see the natural remedies recommended in treating them. Be cautious, and let your medical doctor know what you are taking. Even though these products are natural, they are derived from the same plants as most other drugs. You can suffer an overdose if you and your doctor are not fully informed.

3. How do you eat?

a) Experiment with food combinations  

Many people suffering from bowel diseases have asked me what things are restricted from my diet. They name a long list of things they can no longer “stomach”. What I discovered is that it isn’t the foods that hurt me, so much as it is the way I eat them. For instance, I can’t drink a glass of juice in the morning without getting a bad bellyache. But I can drink the same juice later in the afternoon, along with some type of food. The same thing might happen to me with fruit, if I take it on an empty stomach, or eat it alone. But mixed with other foods the fruit doesn’t cause me pain. I find that I can’t eat all of one thing on my plate at once, without tempting a blockage, for instance all my vegetables or all my meat. Instead, I eat the foods alternately so that it is passing through my system in layers. You might find that you can’t tolerate cold cereal in the morning and need warm soup or porridge instead, or that you have to eat a carbohydrate along with your salad greens. Eating a salad before your main course is much harder on your digestive system. You should move your salad to the end of the meal. Experimentation is the only way to find out what works best for you … Different strokes. Don’t take what is written in a book as gospel. There might be many case studies to back up that people with Crohns should not eat refined flours and sugars (nobody should actually), but they are not something that exacerbate my Crohns, while some of the high fibre grains do. Only you can come up with the best combination for you. Sorry. You’ll have to use trial and error and probably pay a few times before you get it right.

b) Eat smaller meals  

You will find if you are smart enough to cut back on your meals, that you are not going hungry. Our bodies work more efficiently on much less food than the average North American ingests in a day. In fact, the number of people who have reached obesity levels has doubled since 1980. Now one out of every four Canadians, and one out of every three American’s is labelled obese according to the medical standards of weight. If you are one of the 70% overweight or obese in North America, your excess fat may be a factor in succumbing to chronic disease. Replacing fat with muscle will help you use your food more efficiently and increase your sense of wellbeing. Eating smaller meals more often is a good start.

One of the mistakes you might make is to continue to eat the three squares a day that our parents taught us. Your sick body has been telling you for some time that this isn’t working – whatever chronic disease you have. I discovered, over much too much time, that by eating smaller helpings I was taking the strain off my digestive system and allowing it to rest. When we eat large meals, our body has to use up its resources focusing on digestion, so that it has fewer left to fight the disease. When the body is busy digesting a large dinner it is not able to get the necessary deep and relaxing sleep it needs to heal itself.

c) When to eat

With close monitoring you know what foods affect you in what ways, but have you learned how long it takes you to digest certain foods, how much gas they produce, how often you need to go to the bathroom? If you are continuing to work in a public setting, travel extensively or live with others, you will begin to make choices around when you eat. For example you may not eat for several hours before taking a flight or during the flight. You may insist on eating shortly after your flight lands. Or you might not eat after 8:00 p.m. because you know you will not sleep as well. You may choose not to eat gassy foods like broccoli, cauliflower and cabbage if you are in a group and know you will be there for several hours after eating. You might find that you like to be up several hours before eating breakfast, or that you wake starving and feel much better if you eat immediately. As you get to know your body’s needs and what maximizes your sense of well-being you become more independent of other people’s choices. It is important that you meet your own health needs, not wait to eat with a spouse who arrives home late from work every night, or go without a meal because a meeting is scheduled for that time.

 4. How does exercise affect your wellbeing? 

Exercise is one of the first things you drop, if you ever did any in the first place, when you are feeling unwell. This is the worse choice you can make. Your caregivers will emphasize the importance of movement to improving your condition. Even when I was at my lowest weight and weakness and couldn’t move I had a physiotherapist thumping on my chest to keep my lungs from filling with liquid.

Exercise is important for many reasons. If you want to be healthy you better include it in your lifestyle. If you want to stay healthy you better not slack off, and if you are suffering a chronic condition you better find a new way to fit exercise into your life. Why?

 a)  Exercise stimulates your metabolism

This especially affects the digestive process by increasing the efficiency of the absorption of nutrients and the elimination of toxins. Here come your antioxidants, there go your Free radicals. Already your immune system is getting a boost. Focus on aerobic exercise even if it is just walking fast while swinging arms out, around and above head.

b)  Exercise increases flexibility

A constant source of pain to many is stiff joints caused by inflammation, but also lack of use. When something hurts we tend to leave it alone. Up to a certain point, this is good. The pain is your body signalling a part of you is hurt and to give it some attention. That means don’t ignore it, use some short term remedies like heat or cold to treat it, but don’t wrap it in cotton wool and tuck it away. By refusing to use stiff joints we are exacerbating the problem. Our muscles contract and cause even more pain over time. If you follow a daily routine of stretching exercises you can do a lot to alleviate the stiffness and the pain. Depending on your condition, stretches can be gentle to more rigorous.  Once I began to recover, I started yoga. You work at your own pace. It is an excellent way to increase flexibility.

c) Exercise increases circulation

What better way to help heal your body than to get the blood flowing through it at a greater rate? You can provide a higher number of red cells to help fight your disease. Increased circulation also stimulates the growth of new cells to take the place of those that have died fighting the disease

d)  Exercise strengthens your body

If you have suffered a condition that has kept you immobile for even a few days, there is a noticeable difference in the amount of strength you can bring to even a simple task like feeding yourself. By following a regime of simple, repetitive movements every day you can rebuild your strength. Yoga is also a great way to rebuild your deteriorated muscles. One of the muscles of the body that can be weakened by hypertension and heart disease is the heart. I haven’t met a doctor yet who hasn’t urged a heart patient to follow a program of re-building the strength of the heart through slowly increasing the distance of a daily walk. Often heart support groups have a walking or running program that provides the aerobic exercise necessary to make that all important muscle strong again.

e)  Exercise increases your energy level

Increasing the flow of blood through your arteries and veins also increases the amount of oxygen the cells of the body are receiving. In no time you will feel an upswing in your energy level. You may even become addicted to your daily exercise because you feel much better after doing it.

f)  Exercise increases your sense of wellbeing

Oxygen isn’t the only thing you’re getting as you swing down the road with a song on your lips.  Your body is also being given the signal to send serotonin through your system. Serotonin is the chemical that makes you feel happy, great, super great. And exercise is one of the things that sends it rushing to your brains where you get your happy fix.

“Regular physical exercise has obvious physiological benefits. But it also has enormous benefits in psychological health; lessening of anxiety and tension, relief from depression, increase in self-esteem, buffer against stress, feelings of greater vitality, and improvement in intellectual functioning. With a program of regular exercise, you feel better, look better and do better! Those who think they have not time for bodily exercise will sooner or later have to find time for illness.” Edward Stanley, 15^th Earl of Derby

5. How will having a chronic disease affect your social life?

Your social life will be affected and might never be the same again. After all, you’re not the same person as you were before the disease.

a)  Changing Activities

Henry:  When I’m run down I am more susceptible to Crohns. I used to be able to leave right after work Friday, drive most of the night, sleep two or three hours get up rock climb and drive back for work on Monday. I’m missing a lot of climbs now because I can’t do that anymore. I have to drive ahead a day, get a good night’s sleep and make sure I quit in time to get home for a good sleep before work. It separates me from some of the club members.

Henry changed the way he does this activity. He adjusted to meet his body’s needs without giving up something he loves. Often it is the things you love the most that are sacrificed first. You might stop bicycling or playing basketball in order to rest more. You may give up theatre or your bridge night so you can manage your domestic chores. Use some common sense here. If you are making choices around what to do with the little energy and endurance you can garner, pick the things that will further stimulate you and provide a positive outlet. Pay someone to do the domestics or get Home Care to come in. Use your limited energy to play Bridge or basketball. Either activity will increase the levels of serotonin and melatonin in your system. This will boost your appetite, your immune system and your will to get better.

However, be realistic, you may find yourself, like Henry, frustrated by your body’s refusal to cooperate with your choice to continue a favorite activity.

Henry:  I go and climb and build up the necessary muscles to climb, then with the lost weight I lose muscle and can’t do the climbing. It’s a cycle. You’re too tired to go and exercise so you lose muscle, but I think my body is also using up the muscle tissue somehow.

 Matthew:  I’m very frustrated now. I love to run. It’s my exercise of choice. It’s the way I maintain my weight – better than any other type [of exercise]. But because of the problems with my shins, I can’t.  I try riding my bike, lifting weights and massaging myself, but I have gained weight. I am at the heaviest I’ve ever been.

Both Matthew and Henry are seeing their bodies change because they are no longer able to do the activities they love that build strength and endurance. When my back injury kept me from exercising for so long I gained considerable weight and lost the majority of my upper body strength. I’m working to rebuild it, but like Henry and Matthew I have to face the reality of my condition and realize that fibromyalgia affecting my rotor cuffs will prevent me from doing the necessary exercises.  So you slide forward, and slip back, but the important thing is you don’t give up.

When you just can’t do the activity you love put it behind you without regret. Feed yourself positive messages like, “It will be waiting when I’m ready.”, “This is just for the short term.” Focus on a new interest that will also stimulate you.

b) Changing friendships

Gail: I haven’t had a boyfriend since I found out I had Crohns. I don’t know if it’s my doing, my thinking about the disease or my personality. I’m shy and probably put my perception of myself onto them.

Did you drive them away, or did they just not care enough to hang in with you? Probably it’s a combination of both. When you aren’t feeling well you probably don’t want people around you, and don’t have the energy to meet their needs. You could also be a bore, constantly focused on your health, or a bear because your exhausted and in pain. Fair-weather friends will disappear.

You will make a conscious decision to drop some friends because they disappoint you. They may be nosy, insensitive, gossipy or tiring. Remember you are trying to remove the stressors in your life. Some people, whom you never saw as friends before, will become your friends because they bring you the things you do need like practical assistance, a listening ear, empathy, compassion, humor and kindness. Possibly, you connect because you discover you can support each other through a shared experience of the same disease. I found that dealing with my Crohns and hospitalization made me more sensitive and compassionate, so I saw people from a new angle and allowed people into my life that I would not have in the past.True friends will go through hell with you and often do. They feel your pain, your loss. They are as frustrated as you because they can’t make you better. They too go through the stages of grief in facing the loss of a friend, or the loss of the person you were before the disease. They too have to accept and adjust in order to grow along with you.

c) Changing how you contribute

As humans, we know that we benefit by giving to others. Many of you will have donated hours of your time to community events, your children’s interests or have been a productive part of a team at work. Now you have to bow out. Along with the feelings of guilt that you have to say no, that you’re not pulling your weight, that you’re letting them down, comes the loss of affirmation and good will giving generously has provided you in the past. Here is the proverbial closing of one door while another opens. Think of new ways you can contribute.

Sylvia: I call myself a professional volunteer. I loved my work in the community. When I got Lupus I had to start saying, “no” to volunteer positions I would have grabbed at before. When I’m not involved I feel lonely and left out. Now I qualify that I will do what I can for as long as I can. I take on tasks that can be done at home in the middle of the night when I can’t sleep. I still find ways to give, but they’re simpler and can be fit into my allowances of time, place and energy. Now I bake cookies and take them to my doctors, nurses and pharmacist. They love it when they see me walk into the clinic with a batch

6. How does having a chronic disease affect your financial life?

a) Changes in earning ability

• Financial status

Don’t despair. Often if you are forced to take time off, or you lose your job because of bad health, another door opens down the road. Although I was a stay at home mom, and my husband’s job financed us, the years I was most sick cost us a great deal more. I felt that I was dragging my poor husband into financial hell. Then, as I began to recover, my parish rector suggested I take on the part time job as parish secretary. I agreed and found myself earning a small income at the same time as I re-built lost skills and learned new ones. My income continued to increase over the next years.

You may be forced to become financially dependent on your workplace compensation, disability insurance or a spouse or child. It can be a frightening and humiliating time – especially for older men with paradigms that their worth is measured by how well they support their family.

Long term health problems will cause loss of income. You may be the major breadwinner in your family and now have to watch as your spouse takes on extra work to cover costs. You may lose a high-income salary through loss of job or forced retirement and see your lifestyle deteriorate. You may see your income decrease as you are limited by your health to part-time work.

Adam:  When I was diagnosed with ischemic heart disease, I lost my medical as a commercial pilot and Air Traffic Controller, so I took a position as Training Supervisor in ATC and discovered strong administrative and teaching skills I never knew I had. I’m really enjoying this new work.

• New options   

“I have taken up some new work in ministry 

and know I feel better when I look beyond myself.” Daniel

Just the opposite can also occur. Daniel had retired as the Rector of a large Ontario parish and settled into what he thought would be a stress free lifestyle. Then he had a stroke. It forced him to make many lifestyle changes. He chose to quit smoking and drinking alcohol. He also made the choice to go back to work.

Ned: My heart attack forced a whole lifestyle change on me. I retired from my job and built a home in a small rural community. I walk several miles a day, enjoying nature and silence, something I never took time to do before the attack. Many of my neighbors ask if I will do building and gardening jobs they don’t know how to do, or don’t have the time to do. I love to work with my hands. This allows me to go at my own pace and enjoy the work instead of feeling pressured by it. Now I’m earning money doing something I love.

Often a major health problem is the only way your body can get you to hear it screaming “quit”. Have you had tunnel vision for years and been hanging on to a job you knew was too stressful, that gave you no joy, that didn’t meet any of your needs – except financial ones? Now is your chance to turn in a new direction. With recovery or maintenance, you are able to inch your way into work you truly want to do.

b) Changes in Spending

• New choices

With the increase in drugs and treatments for your disease, there is more pressure on the family income and choices have to be made against what isn’t bought so you can pay for your medications. It might be that new bike your son wanted. Instead of sinking under a mountain of guilt and self-flagellation, call a family meeting. Discuss finances and include your child in brainstorming ways you can meet the family’s needs. The gift of inclusion, respect and love you bring your child will be far more valuable than a bike. Who knows, you might decide to sell your golf clubs – you haven’t used them in years – to buy a second hand bike.

• Spending savings

The solution is in your hands. You must accept that your income is changing and pare down your lifestyle to match. There can be many plusses in simplifying your life. With less material property you have lower expenses, less maintenance and servicing, less care, lower insurance costs, less room needed for storage and a lot more freedom. Try disposing of the extra car, credit cards and the clothes, toys and furniture you haven’t used for years. You will feel so much lighter. You will be more aware of what is truly important. There are a lot of plusses in having changes forced on you by chronic conditions. This is one of them.

You see your financial security being eroded as you make inroads into your savings to make-up for lost income and added expenses. This is a frightening time for someone who has a poverty mentality. You believe that there will never be enough. Yet, those savings are already there, in place, to cover these unexpected costs. Isn’t there enough already? If you have faith, you will be more able to recognize the abundance in your life by using more efficiently what you have, recognizing new sources and being open to the gifts of others. A strong person will allow others the opportunity to give and feel good about it, instead of letting pride get in the way.

7. How does having a chronic disease affect your personal life?

a)  Changes in intimacy

By intimacy, I am talking about the special closeness between spouses or partners, both physical and emotional. Often the need for change is harder on your partner than on you. You’re probably feeling so unwell you’re not interested anyway. However, there is generally a backlash of guilt, sorrow or anger around your disinclination to perform. You may feel you are letting your partner down right when he or she is being extra supportive. Some of the people I interviewed shared that they got angry when their partners pressured them for sex, when it was obvious they felt unwell. Or they feel pressured by a partner who wants to know every thought in their head and each feeling as they experience it. Some partners are concerned about hurting you with their lovemaking and so back off. You may accept this consideration with relief; but if communication is poor, you might feel you are now repugnant to your partner, or he or she doesn’t really care.After all my surgeries I felt very self-conscious about my body. When we resumed our sex life, I made it very difficult for my husband, as I brought my low self-esteem to bed and read into every one of his words and actions or lack thereof some kind of indication that I was no longer desirable. If you are trying to be intimate when you are hurting, you might utter a continuous stream of “Ouch, not there, don’t touch that, no, and can you just wait for a minute?” that will frustrate your partner (unless this sounds like your normal sex talk). After several sessions of too much negativity, direction and concern for inflicting pain or causing harm, you will pretty much have your partner brain washed not to come near you again. Of course, this is not what you want. So, be careful how you dialogue and keep the communication lines open. It might be a good idea to discuss your concerns and how to protect body parts during a pre-sex discussion, so your partner is better prepared and you avoid sounding like a drill sergeant when you assume the position. If a partner gets too frustrated, angry, hurt, confused or turned-off by your new approach to sex, he or she might begin to withdraw intimacy of any kind. You may feel like you are being punished for something that isn’t your fault. You long for the touches, hugs, kisses and tussles that were a normal part of your relationship. The loss of them makes you feel even more alone and drops your self-esteem another notch. Again clear communication of your needs and desire to meet your mate’s is necessary at this point.

“I’m not able to be as close and intimate

with my husband and meet his needs.”  Sylvia

Adam: Before her surgeries, my wife was raunchy and ready to try new things. When she recovered, she was conservative in her lovemaking, because she was embarrassed about her scars and pouch. It made me frustrated and angry because there was after that a bond that had been broken between us, a chasm that could never be crossed. The intimacy has never been restored in the same joyful, relaxed way it was before.

Like Adam’s wife, I had all sorts of concerns around body image and low self-esteem. I wish I’d been able to talk to the people who shared their thoughts in this book years later. If my husband could have communicated that it was not how I looked that kept him interested, but the enthusiasm I brought to our lovemaking, I believe I would have been able to put my false impression of how big a part looks played in our sex life aside and given him what he desired. I urge you not to let embarrassment or timidity keep you from discussing this subject thoroughly with your spouse or partner, before you get into bed together, so you are both clear about what really matters. When you are coping well with your disease you desire intimacy with your spouse or partner. Face it, all any of us, healthy or ill want is to know we are loved.

b)  Changing your role in the home

Henry:  When I come home from work, or we are expecting friends and there is a mess everywhere it drives me crazy. Martha is working too, so it is incumbent on me to do my share. I do more because it matters to me. I try not to get upset, but I have to clean it up. I get angry when I see a huge mess of things thrown around that should have been picked up. It triggers my Crohns.

It is obvious that if Henry is going to keep his Crohns under control he and Martha are going to have to make a compromise about their roles in the home. Henry may shift his perfectionist tendencies into low gear and Martha might try harder to pick up after herself. Both will have to set rules and consequences and follow through in getting their sons to clean up after themselves. With less mess and lowered expectations, Henry will find coming home less of a stressor.

You can make your condition worse by worrying about letting down your spouse or family with regards to your role in the house. Again, the best coping skill is to accept and adjust. I couldn’t carry my share of the responsibility for our home and family for many years. We had to say no to some things because of the expense of my medical bills. I could not play an active part in raising our children during their years from 6-12. I needed a housekeeper because I was too weak to clean my house. My husband and kids had to take over some of the meal preparation.

“Know what you can’t do and what you can do and work

in between them somewhere. It changes daily.”  Robert

Your family’s priority is your well-being, so let your high standards slide in order to give them the gift of a healthier you. Most often you’re a temporary slouch and can resume your responsibilities later, or break the tasks into smaller pieces so you can do them over time.

8. How does having a chronic disease affect your plans to travel?

Matthew:  I had to eliminate camping from my life, because I had to carry too much medication and more food. It made it difficult. I love to travel and have been planning to do more, but it is a big hassle with diabetes. It’s difficult to access out of country doctors who know enough to treat you properly. I always take notes from my doctor with me. They also have to give me notes to get syringes if I run out. If I run out of my drugs while travelling, I have to go without. In many countries, you just can’t access these drugs so you better not run out. Sometimes I’ve had to have them courier it to me, which is expensive. When I travel, I have to have all my drugs with me and prescription for my syringes. Often I need to have papers proving I have diabetes, so they don’t see my syringes and think I am doing drugs. 

a)   Packing light

I have to have supplies with me everywhere I go, which means I have to carry a purse, attaché or backpack. It’s a little thing compared to being dependant on a wheelchair for mobilization, but always having a hand and part of your mind taken up with the necessity of lugging medicines and supplies around also causes some physical limitation. The freedom to move freely and quickly from one location to another, one activity to another is now gone. If the seal on my pouch starts to leak, it is time consuming to get my unique supplies in another city, difficult in a small town and impossible in some countries. When you travel take drugs with you that you’re not necessarily on at that time, but that you might need if you have a crisis.

“I work hard at not letting my chronic condition affect my lifestyle.”  Jocelyn

When you are already suffering low energy levels and possibly pain from your chronic disease, having to worry about the details of paperwork and packing for your medication and supplies is almost enough to put you off taking the trip. Don’t let it. With enough experience, this will become as easy as getting on the right train in a foreign country. Travel lifts you beyond your body’s weaknesses and stimulates your mind.

b) Traveling alone

There’s a scary thought, particularly if you’ve just spent weeks in hospital and are weakened by your disease. Now you may have to go back to traveling for work or personal reasons. This might be the only way you get to see your new granddaughter. Remember that your confidence level is going to need bolstering. You need some positive self-talk. “I can do this, I did it before.” “It’s only a short trip and then the family will be there to help.” You also need a practical plan. There are several things you can do to make it easier. Eliminate driving yourself to the airport if you are flying. You don’t need the hassle. Ask a friend or hire a taxi, knowing you’ll be dropped off as near to the ticket counter as possible. Take only a lightweight bag, holding your essentials on the plane, bus, ferry. Check all the rest of your luggage, even if it is more time consuming. You don’t want to have to carry it while you wait and walk long distances to gates in busy airports, shipping or bus terminals. Again don’t stint on cost if getting a limousine will be faster, safer and cleaner than a taxi. Don’t be reluctant to accept help from a friend or family member who offers to pick you up. Take advantage of moving walkways, escalators and elevators. You can push yourself harder on familiar ground after a good rest – travelling is not the time to test your endurance.

c) Traveling with others 

Travel will never be as straightforward again. There are considerations of disabilities, energy levels, food constraints, bathroom accessibility. A person without chronic disease has no idea of the amount of time and energy you put into meeting these needs. Because of them, traveling with others becomes even harder. It means there are more people to consider and more people affected by your needs.

Carrie:  I still love to go on holidays. We love to travel with my parents. But sometimes I feel it is a big ordeal and that I am putting them out. I know it is in my head, not the way they think. I have to work to get it out of my head. Because of the weakness in my legs I spend most of my time by the pool. 

Already concerned because health has placed a greater burden on your spouse, partner and children, you do not want to eliminate the joys of travel from all their lives. When I was hospitalized, or just too sick to go on our annual ski trip, I urged my husband to take our two children and have the experience without me. They did go, but all of them said it did affect their enjoyment, knowing I was not with them or having fun. This situation forces you to find a balance between taking responsibility for your spouse’s pleasure in travel and pushing yourself to go, or staying home to preserve your health while knowing you are disappointing your family.

Jocelyn: Would I let the fibromyalgia stop me from traveling? No.If we didn’t go it would impact on my spouse. But the bottom line is it is easier not to have to do anything, it’s easier not to go. My attitude would stop me from going, or make me not want to go before the physical part of the disease did.

 YOUR CHALLENGE

1.  Take a hard look at how your illness is affecting your work and vice versa. Then come up with a plan that is a compromise between harming yourself irrevocably, and not losing your job.
2. Call a family counsel to discuss the changes in your financial status and brainstorm ways you can: a) stretch your dollars b) eliminate costs
3. Discuss with your partner and children new ways you can socialize and new activities you can take up. Get started doing it.
4. Make a list of all of your prescriptions and over the counter drugs. Check it against the country you will be entering, to see which drugs you can access in that country.
5. Find a pill divider that allows you to ration out your daily pills and have them with you at all times, when in your own country.
6. When travelling outside your country, ask your pharmacist for a printed list of your medications, and be sure each is bottled separately and clearly labelled.
7. Begin to plan your next trip now. If you are incapacitated at the moment, believe it won’t last. Probably imaging yourself on this trip will feed positive messages of healing to your body.

Now that you have accepted your lifestyle is going to change along with you, let us look at who is available to support you through these changes.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[1] The Fibromyalgia Help Book; Jenny Fransen and I. Jon Russell; Smith House Press; 1996

Chapter 7 Emotional Impact

1. What emotions are common to people with invisible disease?

a) Anger

“Anger too becomes chronic and gets tedious.” Phillipa

Gail:  I get angry that all these nasty diseases keep happening to me. I wonder what I did to deserve them.  Bad luck?  A freak of genetics? 

Anger is part of the process of grieving. You must deal with your anger as a necessary step on the way to acceptance. Sometimes you are angry this is happening to you. Sometimes you are angry at a particular person involved with your dis-ease or for a particular reason.

Matthew:  I was very angry when I realized that I had lost the vision in my right eye because they used a different procedure than the one used on my left eye by another specialist in another city.  I felt like suing the first Optomologist [who’d damaged my right eye].

 Phillipa:  I was mad at my family members for not recognizing my sense of responsibility to them was overriding my physical needs.

A big part of the expression of anger is hostility. Your hostility may manifest in various ways from temper tantrums where you throw things, to silent withdrawal and refusal to cooperate with those around you. It may be directed inward at yourself for getting the disease. You may even subconsciously punish yourself by refusing to get treatment.

Your hostility might be directed toward family members as you project your feelings of guilt and accusation onto them, or at medical personal trying to treat you. You may even take it out on a stranger. Expressing your anger probably feels good at the moment, but following are feelings of ambivalence and guilt, as you wonder if you have pushed someone away forever. This too, is often a form of self-punishment.

Shelley: If I couldn’t make it perfect, the anger came out. I would take it out on anything around me, my roommates, parents, partner and objects that I crashed or threw.

 “A loving person lives in a loving world, a hostile person

in a hostile world.  Everyone you meet is your mirror.”  Ken Keyes

b)  Guilt

Guilt goes hand in hand with the mental impact of self blame. Gail feels guilty because she believes her poor eating habits in university triggered her Crohns. My inability to handle stress caused me to feel guilty, and Daniel blames his stroke on his bad habits.

You may feel guilty because your disease is keeping you from performing at peak levels.

Henry:  I feel guilty when I take time off from work to rest. I can’t say I need a day off just for myself. So, I try to take it a little easier instead of taking a whole day. I may drive to work instead of riding my bike.   

Sylvia:  I felt guilt that other people had to help me. I wanted to take care of myself and be independent I didn’t want to rely on other people. And now they had to take care of my son and me. 

You may feel guilty because illness keeps you from spending more time with your children and taking care of their needs. It keeps you from being a helpmate to your spouse or partner. It makes you less of a sibling, friend, parental support, community contributor or career achiever. You see it as letting everyone around you down. Feeling like a burden on the people you love makes you feel guilty and your guilt makes you more of a burden. So let it go.      

Possibly, like many others, you are frustrated by the conflict between your desire to resume work and the structure of the disability systems that keep you from resuming your career in increments of time you can manage. You are forced to stay home collecting disability insurance or worker’s compensation when you would like to become financially independent once more.

Often discouragement accompanies frustration, as you backslide again. You may find a drug won’t work or that doing something has worsened your condition. It is terribly frustrating to work hard for improvement and feel you’re there and then have a relapse for no apparent reason.

Another considerable source of frustration might be the lack of answers to the questions you are asking. So often, the doctors don’t know what causes autoimmune system diseases, what will cure or even alleviate them.

“Asking for help offers others the opportunity

to feel good about themselves.” Robert

You may be frustrated by the need to ask for help. If that’s not bad enough you have to wait for the person you asked to help you. I used to get upset because I couldn’t move many plans forward without the cooperation of someone else. I was frustrated because I felt the situation controlled me instead of the other way around.

The most common frustration expressed by many of you is the inability to do everything you want. You want to be able to work fulltime and carry on with all the activities you used to do. Most often work hours are restricted because the physical demand is too great. If you insist on working, you have to cancel almost all other activities and limit your social life to quiet visits in your home. You find you have to choose from options that are nowhere near what you want for yourself.

d) Embarrassment 

Sylvia:  I was so embarrassed when I found out I had Lupus and it could be caused by stress. I didn’t want to tell anybody because I thought, “Why can the rest of the world handle their stress and I can’t.” 

This is a question I still struggle with today. Over and over specialists and friends tell me to slow down, not be so hard on myself, don’t do so much. I look at other working women, who are also raising children and contributing in their communities and I think I’ve pared my workload down to almost nothing. It embarrasses me that I can’t keep up. If I go at the same pace as other women I inevitably end up exhausted and dealing with re-activated Crohns or Fibromyalgia.

Your limitations might cause you problems that are witnessed by others. You fear you will lose stature in the eyes of your friends and colleagues.

e)  Resentment

Sylvia:  I am, and I have been [feeling resentful]. It’s another one of those things were you don’t want to sit there too long. I hope that resentment isn’t something that I carry with me all the time and that would sort of lessen who I am. I guess I resent this disease and all the adjustments I have had to make. It seems my life just gets narrower and narrower and narrower. I can’t work, I can’t travel I can’t plan ahead with friends.

I also feel some resentment toward the medical profession. There are times I’ve been in the hospital because of pain management, of not giving me the right levels. Why do they give you a 100 grams of Demerol if they know I need 125 grams to give me relief from pain? Why do they always have to leave me in a little bit of pain, not kill it all. Or why did they take so long to put in the pike line, or try a new drug or give me my injections in the hip?

f)  Sadness

Melanie:  I think about how hard I worked, what I put my body through and I would find myself crying. It’s not self-pity, but pity for someone who worked so hard. It makes me sad.

g)  Fear

Are you so afraid of the answer you wait a long time to ask the questions? Are you afraid you won’t be diagnosed correctly and you will have to continue to live with the symptoms and pain with no relief? It was over a year before Robert asked if his heart disease would restrict his life. He was afraid to pick anything up in case his heart exploded. And Adam was afraid to move for six months while he waited for an angiogram and diagnosis. All that time they lived in fear, instead of getting the answers they needed to remove the fear.Fear also comes when you are forced to choose a treatment that seems invasive or will cause long term damage. I remember being told I needed iron injections to kick start my immune system. However, too much iron in my body would have traumatic effects. Therefore I would be hooked up to a machine that would monitor my intake. If it beeped loudly the staff would come running, and I would be quite frightened. It was an awful choice to have to make and I was afraid through the entire treatment.

I was terribly afraid when I was forced to choose going on the Prednisone or death. At that time it was just a new drug on the market, without a proven record. They told me all the side effects it could cause. It would destroy my white blood cells and they would have to draw blood weekly to see how low my SAID count was. They told me with my auto immune system depleted by the disease and the steroids I would be extremely susceptible to every cold, bacteria and virus that came along. They said it would eat away my bone density, cause kidney stones and loss of hair.  Agreeing to go on the steroids was very frightening. Sure enough, because of my extreme sensibility to drugs of any kind, I had every one of the negative reactions. But I survived both the physical symptoms and the avalanche of fear. I have learned so much since then. I will never allow myself to experience that prolonged level of fear again. I worked against any chance of healing myself by feeding constant fear induced levels of adrenaline and cortisol into my body.

Another common fear amongst people with dis-ease is the fear of suffering. You don’t know if you will be able to handle the pain.

Fear plays a huge part in the chronic condition, as you can see. Sylvia feared being abandoned by her doctors, if they didn’t find out what was wrong, if they thought she was malingering or couldn’t stand her complaints anymore. I remember being terribly afraid when I moved to Winnipeg and left all my medical support behind. I wanted my doctors like a child wants her favorite “blankie”.

Diagnosis of a chronic disease leaves you to face your own mortality. This may be brought closer if you have a near death experience caused by the seriousness of your condition or a drug overdose or drug reaction. It is the most frightening experience to hover on the brink of death and wonder which way you will fall.

Of course the extreme of fear is terror. Whether you reach this point depends on your character.  To some it comes unexpectedly and often is so paralyzing that at first you are unable to help yourself.

Jocelyn:  Last year I was paralyzed with fear. Fear of my own mortality. Every symptom I had went from diagnosis to death in my imagination. Everything was blown out of proportion. It was engulfing. I lived in fear of suffering and dying. I’d get a pimple and I’d wonder if this should be looked at. I was paranoid.

“Doctors don’t encourage me to talk about my emotions.”  Gail

2.  Is depression a given? 

a) The look of depression

Shelley:  I had no energy, felt deeply depressed, listless, and found it really hard to get myself out of bed or into my day.

Depression looks different in each individual. What Shelley describes is the cliché understanding of how a depressed person acts and feels. When I went to my doctor because of huge mood swings and high levels of anxiety I was informed I was suffering depression. Quel surprise! In layman terms she explained that our mental stability forms a straight line on a chart. Most of us have low level jags that jut above and below the line as we go through different experiences, euphoria, or disappointment.  When the jags get longer and sharper either above or below the line we are entering dangerous territory or sinking into depression. While Shelley’s jags lengthened below the line, mine spiked high above it. Psychologist, social workers, counselors and pain therapists can identify your specific problems. They will help you find and erase the cognitive glitches that add to your depression rather than help you rise above it (those negative mental messages you keep feeding yourself). If your depression is severe or continues over-long, working with a psychiatrist is an important step to getting medication and professional care tailored to you.

Chronic illness is depressing. It involves so many losses:  loss of career, hobbies, athletics and those losses, in turn , result in a loss of our identities, a loss of our former selves. In my experience, however, depression does not cause this disease; this disease causes depression and I suspect that depression is a component of all chronic illnesses where patients suffer losses of this magnitude.[1]Kathy Rabin

  “There is no doubt your emotions take over the illness

and then you don’t function as well.”  Carrie

b) Recognizing depression

The worse part of suffering depression is that you slide into it unaware. Now your thoughts and feelings are already skewed by the fact that you are in depression and you are unable to distance yourself enough to identify what is wrong and get help. Often you suffer a long time in depression, believing that what is wrong with you has something to do with other symptoms of your disease, side-effects of drugs you are on, or changes in your lifestyle. Usually it takes someone who can measure your behavior objectively to identify you are in depression and suggest you get help.

c) The cycles of depression

Depression can become part of a cycle, for instance if you suffer SAD you may note that you are sinking into depression at a certain time each year. Several years of going through an emotional downer in January and journaling about it, show me that I need to be proactive going into my January. A change of scene, more activity and the refusal to eat everything in sight (preparing for hibernation) will probably keep me from being depressed in January next year.  ou may find you get depressed heading into a treatment or coming out of surgery. You may sink into depression on the anniversary of something you can no longer do, such as annual Marathon.

Shelley:  I wanted to escape inside a little space where I could hide from my feelings. I would see myself turning from a high energy, social person down to one who was isolated and depressed.

Shelley could actually see what was happening to her before she sank too deeply into the depression to be unable to help herself. She made the effort to get to a doctor and request something to get her through her deep depression. She learned if she increased her exercise and went onto a drug for short term relief she could fight free of the depression.

d) Prepare for depression

Your best weapon against depression is not to discount it as a possibility in your life and therefore to be prepared for it. Like me, you can proactively plan to avoid routine cycles of depression through action. By journaling daily you keep a record of what is happening over time and can find patterns that lead you to better choices.

3. How do you feel about death? 

Daniel:  I have thought about the whole idea of dying a lot lately. I live as though I’m going to live forever. I fill up my day. I don’t look ahead.

When Naomi developed IBD, she was able to relate more to her friend, Sylvia who had Lupus. They talk about Sylvia dying. Naomi and Sylvia had one conversation around what song should be played at Sylvia’s funeral. They made a contemporary choice that got them laughing because they didn’t even think they could play it in a church.

Sylvia:  On a Saturday morning in hospital, I woke feeling something was wrong. I phoned my mom and asked her to come. I had waves of fire moving from toes to head – felt like I was in a kind of trance, floating out of my body. I told my mom she had to put my socks on so I could feel my feet, and cover me with a sheet so I could feel my body. In my head I felt like I had a choice at that moment to live or die. I saw a picture of my six-year-old son. His father had abandoned him already. I chose to live for him. The light was extremely bright. I felt like I was perched, kind of lying along the top of a picket fence. I could fall either side. Hours later my sister was there. I sat up and told her I couldn’t feel myself. I got out of bed and went and took a shower so I could feel my body because of the water hitting it. I felt like I came back into my body.

All this time there were nurses coming and going and staff. But they didn’t want to know what was happening to me. I think they were afraid I was dying. My sister told me she was sitting with me because my mom had gone to make the funeral arrangements.

I too had out of body experiences that drew me close to the portal of death. When you have been revived and know you are back among the living you begin to doubt your memory of the experience.  You rationalize it as caused by drugs or fever. Even though you know something happened that was mysterious and different, and there were plenty of witnesses to it, it is often safer to reject the idea.

But death is something you must face. With a strong faith and healthy attitude you can see it as inevitable but not necessarily imminent because of your disease. It is human nature to fight against the thought of death when you are young and used to being healthy. Only with age and chronic pain and disability does it begin to look like a welcome friend.

I see death as just another choice my soul makes to move on so that it can continue to grow. It is an adventure, the beginning of another phase of life. It holds no fear for me. I try to share my belief with those I love. I want them to be comforted, when I die, by the knowledge my departure is just another change to which they will adjust.

Sylvia:  In reality the person who dies is off doing whatever they are doing. It’s the ones left behind that suffer and feel grief. The funeral and traditions are for them. So when I talk about wanting to die they are thinking about life without me and they are sad. And I’m in a totally different frame. I’m thinking, “Heaven, oh I can’t wait to get there.”  

Sylvia makes a good point. If you talk about death with someone who has no experience of the chronic pain, disability and emotional rollercoaster you’ve experienced, they will evaluate from a different perspective. The healthy person cannot see death as release, but only as something terrible that might happen to the person they love.

4. Is suicide a threat?

About three years into my illness, after months of hospitalization, with my weight down to 83 pounds I came home. My mother was staying with us a few days to help me. I lay on the sofa, so thin that the cushions hurt every bone in my body. I must have been terribly depressed, weakened by the constant pain and fight to stay alive. I told mommy I thought everybody would be better off if I just committed suicide. This was no way to live and I was so tired of being a burden on everybody. I was no good for anything and would be doing everyone a favor if I killed myself. I know I really truly believed it was the most practical solution at that time. But I must have been having a real pity party that day. I must have frightened my mother terribly spouting all that negativity.These thoughts are not unique to me. You too, may see yourself as a burden. Sinking under the emotional weight of guilt, frustration and hopelessness, you consider what is best for everyone and often look to suicide as the answer.Sylvia: I asked Allan for permission to commit suicide because that’s all I could see, that’s all there was. But when I’m not so upset and overwhelmed I don’t think like that.What you have to remember is that thoughts of suicide come at your lowest moments when you have the least energy or motivation to deal with them. Therefore, this is not something you should focus on without getting help. Talk to someone who bolsters you with her or his positive nature. My younger sister always had just the right set of tapes or a meaningful gift to encourage me to look outward and rise above the negativity that dragged me toward giving up.   Long term thoughts of dying are doing considerable damage to your hopes for recovery. They are like time bombs being hurtled at your immune system, destroying its ability to heal and strengthen you physically. Remember the power of the mind and spirit and force yourself away from this type of thinking whenever possible.

5. What part does faith play?

a) If you have faith

To me, faith provides hope, the great healer, along with the lightening of your spirit and the comfort of prayer and communion with God. It sends positive messages to your body and gives you a focus for your mind. There are many instances in my history of dis-ease where faith played an active role in my healing. Each time I faced surgery my prayers were panicked pleas to come out of it alive. Though I believed God heard and cared, I had seen many people go through worse around me and didn’t for a minute think I would get preferential treatment. One night I lay awake dreading the surgery to come the following morning. Using the last of my strength, I managed to snag a small pamphlet of prayers placed in each bedside table. It dealt with specific instances, such as grief, anxiety, fear and despair. I worked my way through the whole thing. Suddenly I was wrapped in peace and comforted. God truly loved me and wanted the best for me. I could trust in that completely. I experienced a feeling of total calm, a letting go. With it came enormous relief and a sense of freedom. I slept deeply. The next morning as I waited to be wheeled down to surgery I again was able to feel that great sense of peace and rightness. I came out of the anesthetic giddy with joy and actually laughing, the only time out of 19 surgeries. It was proof God approved of the distance I had closed between us. [2]

Though, the surgeries kept me alive, the Crohns and the steroids used to treat it caused me many other problems.My immune system was so depleted I was unable to heal myself. I returned home with a wound eight inches long and four inches deep that would not close. I lay in bed waiting my daily visit from the nurse to change my dressing. The healing process crept along so slowly progress was invisible. Then a friend came to visit and she loaned me a book on how to pray. It recommended that I should pray that God’s will be done. I began to ask to be healed, “If it was God’s will” and to add, “If it is not what you have planned for me, give me the strength to persevere”. The next day when the nurse looked at my incision she shouted, causing me to jerk with alarm. “I can’t believe this,” she said, “Your wound is at least a quarter inch shallower this morning, when there hasn’t been a sign of improvement for months.”Day after day, as I prayed in this new way my incision continued to close. I was experiencing a miracle. God again demonstrated his approval of my change in direction. I continue to ask God to do his will in my life – really meaning it. I’m prepared to accept whatever results [2]

Naomi:  I have a deep spirituality.  I really think things are meant to be. Things happen for a reason, that’s comforting. I feel I am led places and I receive special messages. 

Sylvia:  Do I believe it’s happening for a reason? Most of us look for a giant purpose. Sometimes our purpose is just to raise our son. What is my purpose? We’re not supposed to know.  

b) If you don’t have faith

You may go into your diagnosis with no faith in a creator God to sustain you. Are you missing an important element of support and healing? I strongly believe it takes body, mind and spirit working in conjunction to bring about total healing and wellbeing. However, this is a personal choice, and you must come from your own spiritual philosophy when dealing with your dis-ease. You may find your spiritual energy in another way – through nature, perhaps.

Or, you may belong to a second group who find the diagnosis serves as a catalyst, turning them from the traditional faith they have followed. You may find God is one of the first you blame for your disease and that forgiveness is not part of the equation. You are angry with God and turn from God.  You may choose never to find your way back, or discover that this is a period of fallout caused by grieving.

“I know life is a mystery and this [disease] just doesn’t make sense.” Melanie

This is the time many people, who care about you for various reasons, your family members, co-workers, faith community or strangers who love you as part of humankind, all want to bring you the solace of faith, or make sense of it for you. You may be inundated with books, pamphlets, bibles and lectures. Parsons, preachers, lay people and priests, all wanting to comfort you in the way they feel is best, may visit you. If you reject the idea of God, you may rid yourself of them through refusal to listen. However, kindness and love often leaves you vulnerable and forced to listen to the message each is trying to give you. You find yourself balancing on a teeter totter between guilt (I don’t want to hurt their feelings) and resentment (why are they forcing me to listen to this when I’m ill) and using up your valuable store of energy. It can do damage to your recovery. Make the best choice, and use a member of your support team to limit your visitors.

c) If you want faith

Possibly, you discover your disease acts as a catalyst to searching for faith. You can look in many directions, not just the traditional churches of North America. You can find answers that work for you among the world religions and practices. One will seek the sweat lodges of the Navaho Indian, another follow the yoga practices of India. Fundamentalists offer healing jamborees, inciting huge emotional response, and yet others seek the isolated practice of Centering prayer.Quite a few people coping with dis-ease have recently turned to Centering Prayer as both a spiritual exercise and method for coping with their disease. It requires discipline and down time – time set aside just for quiet aloneness.

Melanie: Right now I am trying a new kind of meditation called Centering Prayer which I do for 30 minutes every morning and evening. Already I notice I have more focus and energy.

If you are truly searching for the comfort of God’s presence in your life, there are many sources for you. Clinics will have brochures with phone numbers you can call. The hospital provides a visiting Chaplain, or minister of a particular affiliation at your request. There is material on prayer and a Bible present in each hospital room. Expressing an interest to any friend or family member who has faith will get you immediate support through their spiritual community or personal counsel.

“I try the Buddhist philosophy of staying in the moment.” Jocelyn

 YOUR CHALLENGE 

1. Start a journal tracking your emotional response daily. Use it to identify patterns or cycles of emotions.
2. Identify specific cycles of emotion and design proactive ways to avoid them.
3. Write the answers to the following questions. Have you experienced depression or anxiety? What were the symptoms? How long did it last? What did you do about it? Who helped? What helped? Analyze your answers so that you are prepared for the next time depression reaches out for you. Have a plan of people and activities that can help you avoid or cope with depression/anxiety.
4. Consider how faith helps in your recovery. Is this something you might practice more? Research more? If so, do it.
5. Look closely at your feelings around death. Are they causing you negative feedback? Work at accepting death so that it no longer frightens you. Research death, until you find a theory that makes sense and brings you comfort. Then put it on a back burner in your mind. 

We’ve looked at how the disease affects you physically, mentally and emotionally. Now it is time to check out the lifestyle changes you will make in order to adapt.

 [1] Kathy S. Rabin; paper delivered at the National Institutes of Health CFS “State of the Science” Consultation; February 2000; published by The CFIDS Association of America.

[2] Madelon A. Smid; excerpt from “Growing In Faith: Baby Steps to God”, Our Family Magazine; October 2001.

Chapter 6 Mental Impact

 

1.  What is the mental impact of chronic disease?

a) The stages of grief

Carrie: In the beginning, I felt devastated.  I sheltered myself.  I pulled back from people – if you don’t touch me I’ll be fine.  I felt like if the people I knew became involved I would fall apart.  There was no point in being in denial then.  I wanted to know as much as possible, anything that could help me to function better I wanted to know about.  The information served as a double-edged sword.  Sometimes too much was depressing I would reflect on things in my future that were not necessary or healthy for me.  I was angry, maybe with anybody and with nobody.  I didn’t have the “why me?” situation I thought “why anybody?” I was sad because I was losing part of myself.  It was a death, it really was.  Sometimes I felt an overwhelming sadness a total reality that I will never get back what I have lost. Then I say, “Hey kid, shake yourself out of this. If you say you can’t, you’re right you can’t.  I accept things as they come.  I accept what is happening this moment.  I don’t accept too much into the future because that would be too overwhelming to me.  I live my life with the challenges as they are. 

What Carrie is describing are the stages of grief she passed through in dealing with her diagnosis of MS. Most people have heard at some time over the past twenty years, the Kubler-Ross definition of the five stages of grief.  We associate this with being told we are going to die within a specific time frame.  What you may not realize is that you go through these stages many times in your life.  For instance you might experience them at the loss of your childhood, the failure of a dream, and certainly when you are told you have a chronic disease and your life is never going to be the same again.  Kubler-Ross defined the following stages:

1. Denial – it isn’t happening to me. I won’t let it happen.
2. Anger – this isn’t fair. Why me? Who can I blame this on?
3. Bargaining – I will take all my medicine, stop hurting my spouse, … give back the money if this will just go away.
4. Depression – there is nothing I can do. I’m a victim. Life sucks.
5. Acceptance – I have it, I’d better learn to live with it. And I want a good life not a mediocre one.

Prugh and Eckhardt condensed their interpretation of the stages of grief to three:  However, they still carry the same range of emotion.

1. Impact – behavioral regression, bodily obsession, need for nurturance , massive denial of future outcome, fear of death or annihilation of self.
2. Recoil – lessening of denial, less regressive self-preoccupation (mourning for self), attempts to establish control over environment.
3. Restitution – increasing acceptance of the illness outcome, altered self-image and implication of uncertain future. Regardless of which formula best suits you, if you do not succumb to the disease, or mental problems caused by your inability to cope with the disease, you will reach a point of acceptance. It took me over 17 years; but I’m a slow learner, and believed I could reverse the process if I just refused to give in. Acceptance does not mean that you are giving in, as some people falsely believe, but that you are factoring the disease into your lifestyle. I like to think of it as “making friends with the disease”.

“I don’t want to say you have to give in to it.  That sounds like defeat. 

You have to get on with it.”  Carrie

  You may recognize that you have passed through these stages in dealing with your diagnosis.  However, don’t imagine it will just happen once.  You may l find yourself regressing into any one of the stages with the failure of a treatment or side effects from a drug, further surgery or the inability to go on an outing.  You might find yourself in the stage of anger or depression when you watch someone attain a goal you had set for yourself.  The stages will be part of your continuing life, just as they have been part of your earlier life.  Now you will recognize them more easily, and if you are wise, move through them to acceptance, more quickly.

Parents have to be careful that they do not try to protect children from going through the stages of grief.  The child might be grieving because he has been diagnosed with a disease, or be grieving the loss of a lifestyle because of a sick parent.  Because we do not like to see our children suffer we come up with phrases like, “crying doesn’t help”, “hush it will be okay,” instead of encouraging them to express their sadness and acknowledging it as a legitimate feeling.  Likewise, we curtail the expression of anger in our children by trying to fix-it.  Our actions speak louder than our words, and it is our responsibility to role model the stages of grieving, so that our children can emulate us and gain by experiencing a healthier way to find release.

b) A closer look at what is happening in these stages:

• Denial is a refusal on your part to face the situation and deal with it. You will hide in sleep, extra work, food or any other of your addictions. Denial can be healthy over a short period of time, as it helps you to cope while you come to terms with your disease. However, if you prolong this stage you are refusing yourself medical assistance, a better prognosis and peace of mind.

• Stress – your stressors may not increase, but often at this point your ability to deal with stress decreases. You find yourself blowing things out of proportion, reacting to what you would have sloughed off in the past. Again, this has to do with the tailspin your cognitive power is in. Anything that helps you cope with your stressors will improve, to some degree, your thinking ability.

• Negative thinking is your body’s enemy. It has been proven that your cognitive behavior techniques can help to heal your body. When you are ill or undergoing high periods of stress your cognitive abilities are affected. Your thinking can be skewed by old paradigms or mistaken ideas and this has a negative impact on your ability to evaluate your state of well being, relationships, and daily events. These distortions in thinking result in emotional fallout. However, you can learn to y our cognitive mistakes and change them into helpful messages to cope with your illness.

“Many patients are plagued with cognitive deficits. This aspect of the

illness is a significant problem [for them].” Kathy S. Rabin

It is imperative that you dump negative thoughts such as: “This is terrible”, “this is the end of my world”, “I’m helpless”. Replace them with positive thoughts like: “I can cope with this”, “I’ll do it one step at a time”, “lot’s of people will help me”, “I have a great base of support and love to get me through this”.

• Self esteem – one of the first things that happened to me with all my surgery was that my self image was battered beyond recognition. At different stages of my fight I was emaciated, hairless, moon-faced, white-haired, I had patches of skin missing from my body where they had been taken for plastic surgery, I had scars were there was once smooth flesh, pieces removed permanently, others restructured and never the same. I was so weak and sore I walked stooped over, rode in a wheelchair, suffered lip sores and bruises. Finally, I had a piece of my intestine poking through my skin with a plastic pouch over it. Hard to think well of yourself? You bet. I hated my body. I felt ugly, embarrassed and wanted to hide.

“When I was first diagnosed, I said to myself, ‘I can’t be close to anybody right now; because I don’t even know if I like me right now’.” Carrie

Chronic disease can do devastating things to your self-image if you let it.  Only now, 25 years after much of this happened to me, can I share openly.  It still embarrasses me to think of you trying to imagine how I look under my clothes.  But I firmly believe that only by talking about what many consider disfigurements, can those of us who have them begin to accept they are no different than wrinkled skin or stooped shoulders.  They should be perceived as just another physical change on an already unique body.

A second type of self esteem issue comes from the paradigm of unworthiness found in so many Type A’s. Are you one?  If so, this is partly what drives you to perform, achieve and produce. Early in life you received the message your worth was tied up in what your did. Perhaps you are struggling with this, as you find your disease keeps you from putting out at the level you did. You second-guess the people around you, believing they think you are goofing off or being lazy, when you are probably still producing more than your healthy counterparts.  Your own hidden agenda to prove your worth becomes a bat with which you beat yourself.  Each time illness keeps you from producing your self esteem sinks lower. There is yet another enemy to self esteem, the paradigm that many women are taught as children, that we are being selfish if we don’t continually put everyone else’s needs ahead of our own.

Phillipa: As I became less of a perfectionist, I gained some of the worthiness to feel it was okay to focus on myself.  In a sense, I didn’t feel worthy.  Other people came first.  I had to learn that to talk about myself was not being selfish.  My brain was saying you’re not justified in feeling sorry for yourself because other people feel worse than you do.  I was forcing myself to deny an emotion I felt for an intellectual reason – because my problem wasn’t as severe as someone else’s.  And while that helps you keep things in perspective, there is a downside in that you are telling yourself it’s not okay to feel this way.

Your self esteem also takes a kicking when your personality is altered.

• Personality changes – You may find you are not the same as you used to be. You wonder, “where did the ball of fire, witty, vivacious person I used to be disappear?”

Shelley: I’m a goal-oriented person, used to achieving at a high level.  My normal lifestyle is high energy, social, partying and being the centre of attention of fun.  When SAD hits I am negative and lack enthusiasm for anything.  I lack focus, can’t make decisions, can’t prioritize or plan my day.  I don’t recognize myself in this person with no ambition and worry because the people around me aren’t seeing the real me.   When the SAD is bad, I feel like my mind is trying to trick me into complicating things.  It’s like everything becomes a catastrophe that poor little me has to deal with.  Is my condition real or am I a drama queen just trying to get more attention? Often I feel SAD controls me.  I feel myself slipping into that other person.  I try to be positive, but feel control slipping away from me.  I know my personality changes.

•  Self Blame – mentally you can give yourself a real bashing in this area. I spent year accusing myself of causing this disease. It didn’t make it go away. Rather it was more negative self-talk that worked against my well being. By the time you have the disease you can do nothing about the bad habits that deteriorated your health, or your inability to deal with stress effectively, or the fact that you didn’t allow your body enough sleep to rejuvenate. Blaming yourself doesn’t heal. It harms.

Daniel:  I didn’t look after myself when I had the chance.  I didn’t quit smoking when the doctors told me to.  Now my whole life is changed by this stroke.

There is no sense in continuing to hang on that bell-pull.  Instead we must take what we have learned and apply it effectively to improving our quality of life within the boundaries of the disease.   Sometimes we feel guilt because we know, or sense that we are using our illness to gain something we feel we need.  It is a good idea if you are feeling guilty to ask yourself a few questions.

1. Does this give me a way out of a bad situation?
2. Am I using my illness to avoid the possibility of failure or success?
3. Do I see myself as a victim and feel sorry for myself?
4. Am I using my illness to get the care and attention I deserve but was not getting?

Disappointment – many of the people I interviewed talked about the disappointment they felt in other people. Being diagnosed with an invisible disease may be the first major problem in your life. Friends you expected to stand by you, don’t. It’s another unpleasant surprise. In my case, it began to erode my trust in my own instincts and judgements. Who had I been picking as friends all these years? Could I not see the difference between gold and dross? If I was wrong about them, would I make still more poor choices in the future?

“My husband didn’t think I had a problem

 because I wasn’t bleeding all over the floor.” Sylvia

• The curse of an invisible disease – Some spoke of spouses who refused to accept they were ill. The curse of having an invisible disease is people don’t believe you are ill because they can’t see any outward signs of it. Their thinking goes like this: 

If you are out in public and there doesn’t appear to be anything noticeably wrong with you then you must be healthy. If you’re not feeling okay, take a few days off to rest and then you’ll be okay. If when I ask you how you are, you say “fine” I’ll take it at face value. Everyone gets better, so all you have to do is try harder. The more you hide your pain, weaknesses, depression, exhaustion in order to appear normal and not be a burden on those you love, the more skeptical they become about your actual state of health.  You constantly feel the tension caused as you try to balance not wanting to be seen as a whiner or hypochondriac against not being expected to do more than you can or having to make excuses for yourself.  With acceptance of your condition comes the wisdom not to bother.

Robert:  For  several years after my heart attack, I always felt I had to explain to others why I won’t doing something. I would be mortified if an older person was trying to pick up something heavy and I couldn’t help, or if someone is stuck and I can’t help push their vehicle out.  Now I will stop and say, “I can’t give you a hand but I will call for help”. Today it is nothing for me to say I have a health condition that won’t allow me to do that anymore.

Henry:  In the past I took on more work than I was capable of. Now my friends and co-workers know I have Crohns, I mention it in a general conversation and then when they ask me to take on more work than I know I can do without extra stress, I just say “no”.

• Obsession – I have caught myself going through several minor stages of obsession when I couldn’t seem to let go of the fact that I had Crohns. When asked by somebody what I did, I informed them I had Crohns. Obviously, that was how I defined myself at the time “a person with Crohns”. Others tell me they become obsessed with finding the right doctor, cure or drug to alleviate pain. They become obsessed with appearing normal, or contrarily proving they aren’t so they can qualify for worker’s compensation or disability insurance. You might become obsessed with your appearance, your weight or your exercise program. If family members are starting to comment, tease or laugh at you, take note. Are you taking things a bit far?

• Suicidal Thoughts – I certainly had them at different stages of my illness. I remember contemplating throwing myself from the hospital window. Many of the people I interviewed admitted they too had thought of killing themselves as a way to end the pain, sense of failure, sense of worthlessness or out of love for their family who they didn’t want to be a drain on anymore. I take a deeper look into suicide in Chapter 7 Emotional Impact.

2.  How important is the issue of control?  

a) Losing control

“I wanted it [control] and I couldn’t get it.” Jocelyn

Being in control gives us a sense of security.  I have often been called a control freak and responded, “I don’t want to control anybody else’s life, but I want to make certain no one controls mine”. When you have a chronic disease, the first thing you lose is a sense of control. The disease takes over your body, often your mind and your spirit and you are left floundering. I remember feeling like I lost my sense of who I was.  I lost my freedom of expression, my sense of control over my body and environment. Sometimes I find myself wired for no reason I can guess.  I’m having anxiety attacks and my emotional highs and lows are so wide apart my chart looks like a surrealistic landscape.  I feel so out of control, paranoid, anxious and fearful.  I don’t like it.  I just want ‘me’ back.

Carrie:  When I was first diagnosed with MS my thought was, “I have no control.  I can’t get it back.”   Sylvia:  I lost control when I was diagnosed.  That’s probably the biggest loss.  It was like a slap across the face.  I thought, “Look at this I can’t work, I can’t go back to school, I don’t even now if I will live”. I was afraid of dying. I started off with the ‘I’m going to push right through this thing and wipe it out’ attitude. My vision is of banging up against a brick wall again and again. I didn’t win that battle.

Sometimes it is not the disease but the drugs that steal your control. You may just feel like you’re on top of your condition and then a side-effect kicks in, you experience an overdose, you are told you have to introduce a new drug to your system – any of which places you in a new and frightening situation over which you have little control.

Naomi:  One of the worst times I remember is when my friend called me from the hospital.  She told me she was having out of body experiences.  I had also heard this from her mom and sister.  My friend really thought she had been dead. Another time she phoned me. She was on so many drugs she told me her husband had come to visit her and they were getting back together again – getting married. I had gone through so many negative things with her, while she recovered from his abandonment, that I had a fit. I didn’t think she was in a condition where I could say “are you nuts?” It was very, very hard. It turns out he had come to visit her, and because she was on so many drugs she thought getting together was a good idea.  But they didn’t, thank heavens.

b) Regaining control 

“Ultimately I control everything in my life. I decide where and when.” Matthew

It is of major importance to the chronically ill to feel we have some control over our lives. We fight harder for this than for many other things. And we find a sense of control in many different ways. When I feel least in control of my body I try to gain greater control over my environment. I will clean out all my cupboards, tidy drawers, sort piles. It helps me to feel in control of something.

Matthew:  After fighting diabetes for years, I went back to school to gain more control over my life. First I will get it through increased income. Also, because I’m training as a massage therapist I will have more control over how long I work each day.

Carrie:  I have to be mentally prepared. If I’m not mentally prepared my body doesn’t function right. I can’t deal with people who drop in, so I make sure everybody important in my life knows that and phones me ahead of coming.  Then if the doorbell rings I can ignore it because I know it isn’t somebody I love. It helps me control the situation. When I got my electric scooter, I got a piece of control back. I love it. I take it everywhere.

Sylvia:  Often I push too hard and overwork. Then I discipline myself. I set the timer and say I am going to be happy with what I can get done in the next five minutes. Then I will rest.

Phillipa:  If my memory was really bad I would say each number aloud as I wrote it down. I found people to work with whom I could trust. One friend also has Lupus so she is totally non-threatening to me.

However, if you are so determined to have control that a situation is becoming worse for everyone involved, you need to ask yourself, “What responsibility do I take for this?” Possibly, your desire for control is blown out of proportion by the over-riding issues of your health. Find a point of balance where you feel in control of your life, but do not feel the need to control others. Set boundaries around the control you are willing to give up and the control you must have.

c) Losing control of Body, Mind and Spirit

Because we live in a culture made up of people with what appear to be “very delicate sensibilities” there are a lot of taboos around what is decreed socially acceptable or not. Society demands we control our body, minds and spirits so that we appear outwardly “normal”. I take great exception to that word as it is used today to describe what is considered the average person, and will discuss this further in Sec 2 Chapter 18. Trying to appear normal puts the chronically ill through hell. This is a big part of the “Invisible disease situation”. Those around us don’t know that we’re sweating from anxiety because of a situation in which we find ourselves.

Henry:  I get annoyed when I am under pressure and know I’ve got 15 minutes to get to a toilet.  I am searching for release physically, and even more so from the mental stress of wondering if I will make it.

Phillipa:  When Lupus affects my short term memory or concentration, I worry about making visible mistakes that will cause me embarrassment.  In much of my working life I was a bookkeeper so I worked alone and could deal with any mistakes in private.

Matthew:  When the depression hits I can’t always get out of it right away, but somewhere back in my mind I know I have to fight this and eventually I will pull myself back.

Sylvia:  Control is definitely a factor when I get irritated with my husband or son.  The crankiness is from overwhelming pain.

You can see that you may lose control of different areas of your life. One of the worst ways I have lost control is in not being able to second-guess what my ostomy pouch will do. Imagine having it fall off in the middle of sex, or leak all over your bedding while you sleep. The seal might break and leak smelly gas into a car full of people. Or you could be dining in a top-notch restaurant and have the snap on the bottom open pouring hot liquid stool into your lap and down your legs. Horrors! Every one of these things has happened to me. You learn to control as much as you can. I usually have extra materials with me to patch a leak, wake often in the night to empty my pouch, and have learned to make fast dashes through restaurants while my friend pays the bill.

The second way my pouch controls me is in its capacity. It can only hold so much gas and stool and then it pops itself off. I have sat saturated by anxiety-induced sweat through concerts, on airplanes and car rides because I desperately need to empty my pouch and there is no way to do so. And all this is going on while the people around me are totally unaware. The emotional turmoil and mental anguish suffered during these periods is harmful in that they become stressors that decrease your immune system and your energy levels.

Carrie is controlled to a great extent by her catheter. It can be especially difficult on trips. There are not a lot of convenient places to empty it. Carrie’s answer was to cut down on her liquids so she didn’t have to do it as often. She became dehydrated and got a urinary infection that caused a whole other set of problems.  Carrie learned to plan for this eventuality, becoming more conscious of time, temperature and places she needs to stop.

d) Planning for control

Phillipa: I try to take more time with things. I try to work things through ahead of time – to know where I am going, to think before I speak. I process things privately before going public. If I am worried about repeating myself, I don’t know of any  mechanism by which to control, so  I say  as little as possible.

Controlling your environment is only one challenge. We also have to learn to control our mental and emotional impulses. I know losing my temper or getting upset is going to flood my body with adrenaline. Within hours of that happening, I have a Crohns flare-up. Therefore, it is in my best interest to learn to control my emotions. It’s hard, but I’m a lot better at it.

Robert says he has to control his anxiety or he will bring on an angina attack. To that end he resolves problems quickly. Henry knows he has to find ways to deal with his youngest son that don’t push his stress buttons, or a Crohns attack will result. I take a closer look at emotional control in Chapter 7 Emotional Impact.

Henry: When I’m traveling I go to the bathroom before we leave in the morning, then it is a mindset. I control my need as best I can.

Carrie: When we go on holidays together my husband and daughter wants to be active. I rest in the car while they hike. I compensate for what I can’t do. While they hike I read a book. But I’m still in the park. I’m still with them.

Control comes with experience. I learned to not eat, or eat less, or cut out gassy foods before I get myself into one of the above scenarios. But who can predict a delayed flight or a concert that has 30 minutes of curtain calls. Learning to deal with an out of control body or mind or spirit requires a new kind of control – you plan a lot more than you did in the past. What horrifies us in the beginning just becomes another thing for us to deal with during the day. You might learn to schedule your appointments for the time of day you have the most energy or your treatments for the time of day your painkiller is most effective. You might decide to drink less when you go out in public so you don’t have to take a bathroom break from your wheelchair. Here are some other ways people are planning for control.

“I started eliminating one job at a time, knowing it was right to do so.” Melanie

d) Controlling the doobies

It is necessary for you to have control over the “good doobies” in life. There is always someone out there who is so wrapped up in doing something nice for you they don’t bother to read the signals you are sending. Sometime you can say it straight out and they still ignore you. When I was going to have what I considered a particularly embarrassing surgery and recovery, I asked my rector not to visit me in the hospital until my husband phoned him to say I was ready for a visit. When I came out of the anaesthetic there was my rector hovering by my bedside. I was lying on my stomach covered with a cage and a thin sheet. My eyes and face were swollen from lying face down so long. I looked terrible and my breath was probably 100% awful. I was also about to puke. I did not want a visitor. I wanted control over who saw me like that. This dear man had, I am sure, the best of intentions – but they were not the best thing for me.

Perhaps you feel you have no control over family members’ desire to help. For instance, sometimes my sisters will get all excited about a new treatment and try to persuade me to try it. They might even go so far as to make an appointment for me when I say I don’t want to. I feel really pressured, and like they don’t allow me control over what is done to my body. If I go to the appointment to please them, I have the added worry about how I will pay for it, or the products they are insisting I try. I know they love me so much they would gladly pay, but that’s not the point. It is my problem to solve and they are trying to take control away from me. Maybe your friends pressure you to do things when it is against your best interest. In pleasing them you lose control and find yourself in a situation you can’t handle.

Gail:  I get upset when friends ask me to just jump up and go somewhere with them, without realizing I can’t unless I know when and what we’ll be eating or where the bathroom is. They urge food on me that my system can’t handle. I should be old enough to deal with peer pressure and yet I don’t want to be seen as a freak.

Family and strangers can insert themselves in your personal space and leave you feeling helpless to stop them.

Carrie:  I don’t want help unless I ask for it. Don’t grab my wheelchair and start pushing me down the hall without my asking you to. I try to make sure others don’t take control, like carrying me when I don’t want to be carried.  Some people feel sorry for me and want to hug me. This bothers me. Inside I say, “Please don’t mall me you’re a stranger to me.” Often you can’t stop them even if your don’t want them to, so I let them get it over with and try to bring humor to the situation.

e) Control in the home

Often there are control issues over taking care of the home or the children. If you are going in and out of hospital, and have been responsible for the greater percentage of domestic tasks in the home, you are often delegated to ‘the second string’. Conflict can arise when you want to take up your role in the home again, and those who have been doing the jobs don’t relinquish them. Or there might be conflict around how the work is being done. You want control over the final results, and the helper wants to do it his/her way. My husband and I are still battling over whether the stops should be left in the drains on the kitchen sink or taken out between using.

Your absence creates a vacuum in which even greater change might take place. You may have your personal space taken over while you’re gone, even your favorite chair. You might find a different schedule has been introduced or that there is a new pattern of doing things. You may lose your place in the family dynamic or your influence over your children.

Sylvia:  I lost a lot of control when I had to ask my sister to bring up my son.  She did it her way and I had to let her do that whether I agreed with it or not.  When my mother kept him, I also had to be quiet and let her have her way.

Sometimes it’s not about the job, but about when it gets done. I used to get so frustrated. I would be lying in bed or on the sofa unable to do anything and all around me, I could see jobs that needed doing. If I asked my husband or children to do them, I meant right this instant. They thought I meant when it’s convenient to them. I know that was fair, but it didn’t help my feeling of having no control over the situation.

f) Control of your treatment

All of these others areas of struggling for control are just practice to build your control arsenal for when you deal with the medical profession. Here you must maintain control over what is being done for or, to you and what is not. This has to be one of the most important things you learn to do for yourself.

Hopefully you don’t let awe of the doctor, ignorance, politeness, hesitation, fear, shyness or any other feeling keep you from speaking up to protect yourself. It took me many lessons, but eventually I learned that the only one who would be hurt if I didn’t speak up was I.

“Remember you are the boss. You can say “no” to any procedure

 you do not feel is right for you. You know your body best.” Maxine

One time in hospital when I was on steroids and malnourished my surgeon told me that they were guessing my immune system had totally crashed. It was a teaching hospital and he asked me for permission to administer an allergy test to me so that they could see if my immune system would be able to react. I owed the man my life a few times over, but I said no. It didn’t make sense to me to allow them to fill me full of foreign substances if I didn’t have anything left with which to fight them. He was gracious about my decision

Often you are left at the mercy of the “way we do things”. A resident might leave written instructions for a drug without discussing it with you. The nurse comes in and insists on administering it because it is now on your chart. Tell your doctor you will not take any new medication unless he has discussed it with you.  This ensures that someone won’t come into your room to administer it to you at 10:00 p.m. and you can’t refuse without a big fight.

Carrie:  I’m a take control kind of person, even as far as the medical world is concerned. I don’t want anyone to condescend to me. If there is something I know about that isn’t being done for me, I’ll voice it. ’ve been asked many times, “Are you a nurse?  o you have medical training?” I answer, “No. I know what I know because it’s in my best interest.”

“When the ripple hits your life you have to stand firm

in order to maintain some control.”  Jocelyn

Control is just something we reach for because we think we have to have it.  Often a little flexibility will go a long way to resolving the situation.

3. How can flexibility make things better?

Phillipa: Part of being able to put on a show of normalcy is that I chose a working environment that gave me flexibility. If I had to question if I was really too ill to go into work, part-time work allowed me to say “I can do it for four hours”. It was harder if I had to ask myself, “Is it in my own best interest to go into work? What will be the consequences tomorrow or the next week?” Work, for me, was like a marriage vow. You make a commitment to go to work and you don’t break that commitment. It would also depend on the nature of the work. If it was critical and nobody else could do it, that puts more pressure on you to go in”. I developed a formula that allowed me some flexibility. 1) How debilitated am I today with respect to what has to get done? 2) How important is the work? Is it critical? It was hard to come to that place. Prior to that change, I took every commitment to be critical. Now I am much more flexible. I say, “We could have this meeting next week.” Flexibility allows you to be in control. As Sylvia explained, “if you lose control that sounds negative. Yet, there are all sorts of things we lose control over. Being flexible is a more positive way to look at the situation.

Working from my home gave me the flexibility not to answer the phone or look at the fax. For years in the afternoon, I had a nap, which I wouldn’t have been able to do in a normal working situation. There were many times when I couldn’t do things and I had the flexibility not to do them, without having to confess to the whole world, or at least my employer, that I couldn’t do it today. I always got it done, just in a better time frame for me.

a) A helpful tool

Carrie: I can be looking forward to going out in the morning and by 4:00 p.m. know I can’t. I physically can’t do it. I have to plan ahead, and yet, I know, as I plan, I might have to cancel. It’s a double-edged sword. I have to be flexible at all times.

Instead of feeling like you have lost control you can use the tool of flexibility to bring sense back to you life. Adjusting is an ongoing situation. There are always new people and outside influences to factor in. There is always something to learn. What appears to be a major problem that could drag you into the pit, can be overcome by a change in the way you handle it. For instance, Sylvia and Matthew both found flexibility allows them to put a positive spin on things.

Sylvia:  I have no control over the fact that I get very little sleep.  For many people this would be frustrating, they would have anxiety and insomnia.  But I look at it as another opportunity.  I tape TV shows during the day and watch them all night; or I read.  I have a 24 hour day.  I can do anything I want.  I don’t have to worry about getting to work in time the next morning.  I take care of myself whenever, and however I can. I have to be flexible around bigger things.  I’d like to hold down a couple of jobs.  I can’t do that. 

Matthew:  I have a great deal more flexibility now.  In the past, if I was feeling unwell I had to make an appointment, go to the doctor, wait to see him, fill the prescription he gave me and follow his orders.  Now I make the adjustment in my insulin dosages myself because I know my body so well.  I accept the consequences of my choices and take responsibility for them. 

b) Finding a balance

Gail has learned to be flexible in her sleep patterns to accommodate her Crohns symptoms. However, she says over all she does not like too much flex time in her life. She knows she does better on a schedule.

You may recognize that a regular routine makes it easier to control your disease. You search for a balance between the routine that reduces stress and the flexibility that is part of acceptance. This mental flexibility results in positive change. Being flexible means learning to take advantage of the right time, place and state of health. When you cultivate spontaneity and teach it to those around you, you can bring more quality into your life and theirs.

“I go with the flow and don’t lock myself into positions.” Shelley

If the people close to you are unwilling to be flexible you will notice a steady deterioration in your quality of life and relationship with them. If they are willing to be flexible, together you enhance your lives.

Robert:  I’m relieved that my wife is willing to accommodate to my heart condition. I just have to communicate to her that I need to slow down, or sit down, or not go out that night and she’ll agree. It doesn’t bother her to change her plans because she’d worry more if it was not a good situation for me. 

4.  Why is spontaneity a good approach? 

a) Walking the wire

One woman I interviewed told me there is a balancing act between spontaneity and the need to plan. This line showed up many times in the interview.

Carrie: If we said. “Let’s go to dinner.” It’s spontaneous but it involves planning. I still need to know where I’m going, what are the facilities. Knowledge is my safety net. I feel very insecure when I don’t know what to expect. In a sense I am taking a calculated risk after researching as best I can. 

Sylvia: I don’t plan too far ahead because I don’t know if I’m going to be able to do it. I would be too frustrated. So, I do it on the spur of the moment. Sometimes I leave the hospital after a treatment and say I feel great and we leave on a trip. But I can just as easily say, no it’s not working and we have to stay home

“You put the scenario of what is the worst thing that can happen out there

and prepare for that. If it doesn’t happen you are ahead.” Carrie

  b) Receiving a gift

“The signs are there and I read them and act on them.” Phillipa

Learning to be spontaneous is a gift that comes free with the disease.  For a TYPE A personality it is a real change in direction.  You soon realize how much freedom it provides and how much joy.  I feel I have benefited greatly from being forced to become more spontaneous.  The people around me feel I am a little less time driven (I was obsessive before).  They relax and better enjoy the things we do.  Spontaneity also takes the pressure off always having to plan, or be expected to plan by co-workers and family.  Being responsible for all the details is a heavy burden you may have carried for years.  Now you can dump it along with the resentment that you always were stuck with the job.

Carrie:  Spontaneity has become important because I have to do it [the activity] when I feel up to it.  If I put going off until tomorrow I may not feel up to it then.  My husband loves to go to flea markets, so if I see something in the paper Saturday I say, “Gee I feel good. Let’s go.”  We won’t wait till Sunday we’ll go right then.

5. Will I learn to accept and adjust?

a) What is acceptance?

Webster’s new dictionary defines accepting as ‘to approve, to agree, to believe in’. A great many of the people I interviewed had to think really hard about the role of acceptance and adjustment in their lives.  Had they?  Did they?  Some had their own definition.

Matthew:  I can’t stand people who say,  “Just accept your disease.”  Nothing pisses me off more.  You don’t tell a Cancer patient to accept his Cancer.  That’s a defeatist attitude.  Learn how to treat it and deal with it but don’t accept it.

Like Matthew, I refused to accept my disease.  I fought it every step of the way.  To me accepting was acknowledging defeat.  Now I know I was just slowing down my ability to move on.  I said I have Crohns, I realized I had Crohns, I lived like I had Crohns, but I refused to accept that Crohns should make my life different.  I only recently have acknowledged that it does.  Acceptance is the key to the door of living fully.  Until we take this step we are locked on the outside of life.  Melanie learned that lesson and passed it on.

Melanie:  Before I could control everything tooth and nail, until I realized I had a choice.  I could refuse to accept and be sick – or – I could accept and go on.  I knew if I was ill I would be no use to anybody.

“I don’t think of it as acceptance so much as living my life.” Carrie

  Carrie:   Maybe I have accepted more than I thought.  I don’t sit back and look at it.  I live my life with the challenges as they are. Maybe some people come to full acceptance but I accept what is happening this moment.   Sylvia:  I was so embarrassed that I couldn’t go out to work.  It bothered me to tell people that I’m sick or I’m on disability.  A friend said, “why don’t you tell them you’re retired.” Now I say, “Everyday is a Saturday for me”.  It’s a lot easier for me to accept.   Gail:  I think the only way to live with a chronic disease is to accept it first.  Otherwise you are going to be fighting yourself, because it’s part of yourself.

“You can’t treat it [your disease] like a visitor

that will go away if you’re rude to it. Gail

  b) Adjusting

A big part of adjusting has to do with being able to accept the present situation. We are making adjustments all of the time. Sometimes life demands that we make huge ones all at once, like going from being an athlete to a quadriplegic. More often we are given the time to gradually shift our point of view until a new situation is acceptable to us.

Carrie: It is not instantaneous. With me things started happening. The first time I was paralyzed in a matter of days. You take what you’re dealt – you haven’t adjusted at that point. But when I was back in remission things [symptoms] progressed more slowly and I adjusted as they happened over time. So, I wasn’t aware I was adjusting, but I must have been, because I accepted this was the way it was. I didn’t want to use a cane. I was so young at the time it was probably vanity. It was such a hard thing. I didn’t want to lose my independence. Now I look back over 20 years and know I need a wheelchair or motor scooter to go out and that gives me independence. It shows me the difference in how much I’ve changed. It was a psychological adjustment over time. Now I would take the cane over the wheelchair any day. It’s ridiculous, ridiculous. I thought the cane was a big deal at the time. Adjusting from a cane to a wheelchair forces you to face reality. You can fool yourself for so long saying, “Don’t be silly, I’m not disabled”. But then you reach a place where you have to accept the change. No doubt, it was months and months that it took me to make that mental shift.

Sylvia: A lot of people with Lupus are what I call Triple A types – go go go, do do do, be be be. We drive ourselves into the ground. It’s almost like having to do a personality transplant. So for me adjusting was hitting the wall a number of times and then saying to myself, “You know you are not going to win this battle. It’s not a question of diet or reducing stress. You just can’t win. It’s like making a mind adjustment. Adjustment – that’s me. And it is a daily thing. I’ve adjusted to the disease and probably as much to the side effects of the drugs. I’ve adjusted to the fact that I can’t work, can’t do volunteer work in my community and lots of times can’t even sweep my kitchen floor.

c) Methods of adjusting 

I learned that adjusting is an ongoing process.  You are moving forward in a healthy manner if you learn to take little steps towards accepting and you are patient with yourself. Over time you develop a pattern or habitual response that is your way of adjusting. Adjusting to the condition of the day becomes an intrinsic part of your life. From minute to minute things can change.

Often you are caught in a situation that requires patience and a good attitude to get you through. When something goes wrong in my life, I react first. I always react emotionally.  Then I realize that I have to do something about it (sometimes you can sometimes you can’t), so if there is no action I can take to change my circumstance I change my attitude to make it more tolerable.  That is my acceptance.

Sylvia:  I go in a cycle. Something new happens. I’m frustrated by it. I say, “What now?” Then I go about dealing with it. I get help.

Matthew:  I’ve had to adjust to waiting, to not being able to assume my running until I have surgery. Because of the huge backlog and lack of money for healthcare in my province I’ve had to wait two years for something that should have been done in three months. A big part of my life is on hold.

“People ask, “If you could change this thing would you?

 And I answer, yes, change it, but let me keep what I’ve learned.” Carrie

 Your spirit forms the base of your triangle of well-being. You may be doing all you can physically, and mentally to deal with your disease, but if you’re not feeding your spirit’s need you can not find wholeness. Let’s look at how your emotions affect your spirit.

 YOUR CHALLENGE 

1. Analyze your sense of control. If you are experiencing mood swings, or don’t feel like yourself, note if this can be drug related, or part of your symptoms.  In any area where you feel you lack control, take action or change your attitude.
2. Explain to your partner/spouse and other close family members that you want to be more spontaneous. Experiment with what works over the next month, calling the shots according to your health.
3. Sit down with the good doobies in your life and gently explain how what they are doing is stealing your control and choices. Tell them you will firmly resist these suggestions from now on. They may still try, but be prepared to back up your word.
4. Explore the area of acceptance with a close friend, psychiatrist or your doctor. Where are you on the acceptance wheel? By identifying certain adjustments you have made in your thinking and lifestyle you will get a better picture.
5. If you know you are going to have to stay home and not go back to work accept this new lifestyle and adjust to it. Buy a comfortable, clothes that are easy to get into.
6. Next time you see your doctor take control. Ask that question you’ve been too timid to ask before, say no to a treatment you don’t think is helping, or request the medicine you think might work.