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


  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.


  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.