Sick and Tired of Being Sick and Tired

Strategies and alternatives for coping with fibromyalgia, bipolar disorder and other chronic illnesses

Guilt and Chronic Illness

Posted by wendyburnett on January 16, 2010


“Guilt: the gift that keeps on giving.” – Erma Bombeck

I feel guilty all the time – guilty that I’m not able to do all the things I used to, guilty that I can’t work more, guilty that I had to quit the good job that provided the majority of our support, guilty that we lost the house and the car and most of our belongings as a result, guilty that my husband has to continue working at a job he hates so that we can barely scrape by . . . It makes no sense, because I didn’t decide to get sick, but I even feel guilty for HAVING a chronic illness in the first place.

My husband also feels a lot of guilt – he feels guilty that he “can’t take better care of me.” (His words, not mine.) That covers a lot of ground for him. He feels guilty when I come home from work in pain because he thinks that if he made more money I wouldn’t have to work. He feels guilty about losing his job when I got too sick to work, and not being able to find another one for so long, because he thinks that if he’d been working maybe we wouldn’t have lost so much. He never complains about all the things I can’t do, and he never mentions it when my inability to do something irritates him or makes him angry, but he feels guilty about having those feelings anyway. He doesn’t understand that “knowing” I was sick when we got together didn’t equal “understanding” what it would be like for him when I had a flare, or how it would affect him emotionally.

Guilt is a HUGE issue for anyone with a chronic illness, but we rarely realize that it is just as much an issue for those who love and support us. We feel guilty because we’re sick, and they feel guilty because they can’t “fix” it for us.

It’s a horrible feeling, and it’s something that we don’t talk about much because it makes us so uncomfortable. In my experience, if we try to talk about it we get so uncomfortable that the conversations get “short-circuited” by an immediate response of “it’s not your fault.” When someone is expressing guilt, that SEEMS like the most appropriate response, but it’s really not very helpful. “It’s not your fault,” prevents us from expressing our feelings, and it stops the dialog before it really gets started. We need to find ways to acknowledge those feelings without either minimizing or reinforcing them, the question is, how do we do that?

Whatever the illness, guilt is a factor, and it can sabotage our efforts to improve our situation if we let it. In addition, unhealthy guilt can actually make our illness worse by increasing our stress levels and making us feel that we “don’t deserve” to do the things that help us feel better. If I feel guilty about feeling exhausted and not being able to do the dishes, so I force myself to do them anyway, it makes my symptoms worse and I am even less able to do the things I think I “should” be doing.

Notice those words, “unhealthy guilt.” Guilt actually comes in two versions, healthy and unhealthy. The healthy version is the kind of guilt you feel when you do something “wrong” like hurting someone else. This is the kind of guilt that causes you to correct your behavior and make amends, and is a learning experience that can make you a better person. Unhealthy guilt, on the other hand, is the kind of guilt we feel about things that we have no control over, like our illness. This kind of guilt serves no purpose, makes us suffer for something that isn’t our fault, and frequently leads to self-hatred and feeling like a failure.

I haven’t found many resources out there that talk about dealing with guilt as it applies to chronic illness. Most simply say “don’t feel guilty” without offering ANY ideas about how to accomplish that, however Dealing with Guilt, a downloadable pdf file from CFIDS.org actually provides helpful information. In addition, the book “Living Well with a Hidden Disability” by Stacey Taylor, has sections on the stages of grief and dealing with difficult emotions, including guilt.

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2 Responses to “Guilt and Chronic Illness”

  1. Yes, to everything you say here. And more. When kids are involved, and you are solely responsible for them, they (at times) must become caretakers. That guilt is almost unbearable. Yet they manage well when we can give them some perspective (harder when they’re very young). One can only hope it will make them more compassionate as adults, and that the resentments (which surely are there, and hidden) will not be too great.

    • Thank heavens I don’t have THAT particular guilt to deal with. You never know how childhood experiences will affect someone, but if you provide them with the tools they need to deal with their emotions in a healthy way, they’re much more likely to come through with minimal negative effects.

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