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.


  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. 

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