Although your disease is a condition of the body, it affects the human spirit as well. If you live with aches, pains, stiffness and fatigue; if you’re physically limited in what you can do; if your appearance has changed; and if, in addition, you fear for your life – your thoughts and feelings about yourself and others are inevitably affected. Distressful thoughts and feelings about yourself and others can undermine your life as much as, or even more than your illness. It’s bad enough to have to put up with all the physical ailments of your illness: why should you have to put up with more emotional distress than necessary?

Even though you may not be able to do anything more about many of your physical ailments, you can do something about your emotional distress. This is so, because your distress is brought on by how you think about yourself and your illness, and you can change how you think.

In this article, I’ll describe ways of thinking that lead to emotional distress and then I’ll suggest ways of thinking that can help you live a less stressful life, even with your illness.

You Blame Yourself

Medical research may not, as yet, have found the cause of your disease. If that’s the case, you’re living with an ailment that seems to have come from nowhere – that has no rhyme or reason for being. But you need to make some sense out of it. There has to be some reason why you got it. It’s hard to live with the unanswerable question, “Why me?”

Blaming yourself for your illness may be your way of answering the question.

You’re most likely to blame yourself for your illness if, as a child, your were blamed when things went wrong or when something bad happened. But you may blame yourself even without this background.

You may believe your poor health habits or your “nerves” caused your illness or that you brought it on by something you did that you shouldn’t have done. Or maybe your family blames you for something you did and you think they may be right.

You may believe the stress in your life was the cause. It’s certainly a popular notion shared with many in the mental health profession that upsetting emotions bring on diseases of all kinds. And there was plenty emotional stress in your life before your illness.

Whether what you did or the stress in your life was the cause of your illness can only be determined by future research. And even if stress, or something you did, is eventually found to be related in some way to your disease — which it may not be — does it make sense, in the absence of research evidence, to blame yourself? If you think about it, maybe its better to live with the discomfort of the unknown, than with the pain of self-blame. It would certainly be less upsetting.

If you think in more religious terms, you may explain your illness as God’s punishment for bad behavior. You know, you didn’t lead a “pure” life according to your religion, and maybe that’s why you were inflicted with an illness.

If your illness was God’s punishment for bad behavior, everybody would have some disease of other, since no one’s life is beyond reproach. Be that as it may, it’s unlikely that your sins were that much worse than all the well and healthy people walking around without any kind of physical ailment as punishment.

You may not, in fact, think that you did anything wrong or bad enough to deserve your affliction. After all, you were and are a good person. In that case, you may blame God for letting this happen to you, or you may have lost faith in God when you need him most. I realize that religions in the past have taught that disease is God’s punishment for sinful behavior. If you’re troubled by this thought, or if your faith in God has faltered, I suggest that you talk to a pastoral counselor of your religion, or read Rabbi Harold Kushner’s book, “When Bad Things Happen to Good People”.

You Feel Sorry for Yourself and Envious of Others

Since getting ill, you may feel that an awful thing has happened to you that shouldn’t have happened. You may feel singled out and treated unfairly in life. You’re most likely to feel this way when you compare yourself with your healthy family members and friends who lead normal lives and who are able to do things you can no longer do. You can’t help feeling envious that their lives are going on as usual, while yours may be in shambles.

Of course, with or without a chronic illness, if you compare yourself with others, you can always find someone better off to agonize about, just as you can always find someone worse off. But when it comes to a disease, there’s no rule book that says who should or shouldn’t get one; just as there are no rules indicating it’s fair or unfair if one person gets a disease rather than another.

In any particular instance, a disease is a chance event, like the hand you’re dealt when you play a game of cards. An illness was one of the cards you were dealt in the “game of life.” And in the game of life, as in a game of cards, you can decide to live or play to the best of your ability with the cards in your hand, or you can decide to make yourself miserable by focusing on the awful hand you were dealt.

Put differently, you can decide to live as fully as possible, within the limitations of your illness, or you can decide to lament what has happened to you instead. But in either case, keep in mind that while you don’t have a choice whether or not to have an illness, you do have a choice as to how to think about and how to live with it.

You Feel Guilty

If, because of your physical condition, you’re unable to do all you think you should be able to do, you may feel guilty for being ill. This is most likely to be the case if you’re unable to fulfill your responsibilities to your family.

If you’re a man, you may feel guilty if you can no longer earn a living, fix things around the house, or function sexually as you used to. If you’re a woman, you may feel guilty if you can no longer keep your house or do things for your husband as you once did. And if you have young children you can’t take care of, your guilt may be unbearable.

Worst of all, however, is not to be able to take care of yourself – to need help in such personal matters as dressing, bathing and toileting. You may not only feel guilty for being a burden on whoever helps, but you may feel embarrassed and humiliated besides. Not only that, you can’t imagine how anyone can take care of you in this way and not come to resent you.

Feeling guilty comes from the notion that you’re doing something bad or wrong when you don’t meet your self expectations or when you don’t meet the expectations of others. But in being sick and in being physically limited by your illness, you’re not doing anything bad or wrong. When it comes to an illness, there is a difference between doing something and being something.

An illness, like aging, is something that happens to you, not something you do. You’re no more responsible for the disabilities due to your illness than you would be or are responsible for disabilities due to aging. In neither case does incapacity mean you did something bad or wrong.

But maybe you feel you’re taking advantage of your illness by not doing things you’re still able to do. Maybe you ask for more help than you need and you feel guilty about this. If this is so, you have to decide whether you want to limit your life by using your illness in this way and then feeling guilty, or whether you want to live as fully and independently as possible within the actual limitations of your illness and with less guilt.

You may also feel guilty about the changes in your family brought on by your illness. If this is the case, keep in mind it’s only by chance that the disease is in your body rather than in the body of some other family member. After all, it could have been your husband or one of your children who got the disease, instead of you. But no matter which member of a family happens to get a chronic illness, an illness is a family affair, and the whole family is inevitably affected. Like it or not, each family member has to accommodate to the illness in the family one way or another.

Not only that, if your partner or one of your children had a chronic illness that required your care, would you want them to feel guilty for the accommodations you would have to make? Would you want them to feel guilty for being a burden on you? You know you wouldn’t.

While you’re not responsible for the physical limitations brought on by your illness, over which you have no control, you are responsible for the guilt you feel related to your illness over which you do have control. This is so because guilt comes from your belief that you’re doing something wrong in being physically limited by your illness. And as I’ve suggested, there are more realistic ways to think about yourself and your illness that would allow you to live without punishing yourself with guilt. Self-punishment is what you add to your illness, it’s not part of your illness.

You Feel Ashamed

If you view having a disease as a weakness, a defect, or a failing on your part, you may feel ashamed of being ill. This may especially be the case if you need to see yourself as self-sufficient and as a person who can take care of yourself no matter what, and now you have to depend on others to take care of you.

However, no one is, in fact, self-sufficient. Self-sufficiency is a self-illusion. We all need each other, one way or another. Of course it’s true, that with a disabling condition you need others in more ways than you would otherwise. But what you get from others physically, can, in part, be balanced by what you give emotionally. And what you’re able to give emotionally doesn’t have to be limited by your illness.

You may also feel self-conscious and ashamed if your disease has symptoms that show – if your disease has affected how you walk, how you talk, or how you look. You may feel self-conscious and ashamed of any physical symptoms that set you apart from others, like uncontrollable bodily movements or a deformity of any kind. These visible signs of your ailment that announce to the world that something is wrong, may make you feel like a freak.

Your appearance is important to you not only because you have an image in your mind’s eye of how you’re supposed to look, but because you feel the attention and affection you get from others is due in large part to how you look. This is especially so if your disease has altered your facial appearance in some way.

For anyone whose face has been changed by illness, it’s important to keep in mind that even though your disease may affect the look of your face, it doesn’t have to affect the look on your face. The look on your face is, in part, an expression of how you feel about yourself and others.

If you devalue yourself because your illness shows, or if you assume that only your appearance matters to those around you, you’ll relate differently to others. And relating differently, more than looking differently is what mostly affects the response you get from others.

It’s not that people don’t react to your appearance but they respond primarily to the inner person reflected in your behavior and expression. A person may attract others by his or her looks, but is not loved for looks. So even if the look of your face has changed, it’s your feelings for others reflected in the look on your face that will bring you the love and friendship you desire.

When all is said and done — it’s up to you. To have a chronic illness and live without blame, selfpity, envy, guilt or shame you have to come to terms with the fact that physically you’re not the same person you used to be. Yes, for a period of time, you’ll be tearful and sad over the loss of an identity you took for granted — an identity of a physically healthy and able-bodied person. But, if after grieving this loss, you can say, as did Popeye the Sailor Man, “I am what I am and that’s all I am” — you’ll no longer suffer as much emotionally because of your illness.

While the “symptoms of your body” are caused by your disease, which is not under your control, the “symptoms of your spirit” are brought on by your outlook, which is under your control. After all, it’s your beliefs, your self-expectations, your ways of thinking about your self as a person with an illness that lead to your emotional distress.

Changing your thinking is up to you. I hope you take up the challenge of developing ways of thinking that help you live with your illness with the least possible emotional distress.

Notes:

1. This series of articles relate primarily to the emotional effects of disease that emerge during adulthood rather than conditions present from birth.
2. Of course, a man or a woman can feel guilty for being unable to fulfill whatever family responsibilities he or she has assumed whether or not they are traditional for husband or wife.

Author: Dr. Mark Flapan, PhD (1997)

 

Editors Note: Dr. Mark Flapan had Scleroderma and was the founder of the Sclerodoma Federation. He was a psychologist with special interest in the emotional effects of chronic illness, both on the ill person and on family members. He passed away in the late 1990’s. This article is reprinted with permission from the Orphan Disease Update published by NORD, and is part of a three part series.