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“Chronic Illness” & Being “Sick”: Disempowering Language?

People sometimes criticize me for saying I have a chronic illness or calling myself sick. They tell me it’s disempowering, that I’m being negative and limiting myself. I get the pop psychology behind the critiques and understand it may be helpful for many people to shed these labels. For me, however, it was crucial to embrace them.

I grew up believing I could do anything if I put my mind to it, that I could push through anything and succeed with hard work. For my first 13 years with chronic migraine, I did just that. I was laid up by “bad headaches” at times (sometimes for weeks at a time), but mostly I took drugs and soldiered on. Then the migraines got so bad that I could no longer pretend I was OK.

I felt like such a failure. Not only did I have horrendous head pain every day, I thought I was to blame for the changes in my life. I thought if I had been strong enough or worked hard enough, I would be able to live a normal life.

Many years later, I can tell you I was wrong. It took me a long time to believe that. First, I had to deprogram myself from all the brainwashing I’d done. Before I could do that, I had to open my eyes to the fact that I had a disabling illness. I had to accept that I had done nothing wrong and I had not failed. I had to believe it was possible for an illness – even one that included headache as the primary symptom – to be debilitating. I had to see that, while I could influence my health, it was ultimately beyond my control.

So, it’s been important for me to acknowledge that I can’t do some things because of migraine. It’s been vital for me to accept that migraine can be incapacitating. It’s been necessary to see my “failures” not as my own failings, but as a natural consequence of severe illness.

Despite what some people read into my language choices, I do not see myself as a victim. I do not seek pity. I do not believe migraine has ruined my life. I do not solely identify with illness (it’s part of me, but by no means all of me). My ego does not rest on having a chronic illness or being sick.

Maybe some people do have their identities intertwined with illness and need to shake it off to become psychologically healthy. That’s not me. Validating my experiences and emotions – rather than ignoring reality – has let me find peace in life with illness. That sense of peace was maddeningly elusive in the years I denied the truth.

16 Responses to “Chronic Illness” & Being “Sick”: Disempowering Language?

  1. Kerrie, I very much appreciate what your language choices have taught and encouraged me. Thank you. ~elizabeth

  2. That didn’t even make sense but you know what I mean I hope (migraine brain). <3

  3. Thank you for posting this. Sometimes, when I tell people about my migraines, I feel like I’m admitting to something terrible. I will remember your words next time. I am not my illness. I have migraines, they do not have me.

    ~Cindy

  4. Gail says:

    Really appreciate your words – how they validate the severity of the problem, but do not imply that one’s identity is intertwined with it. Thanks.

  5. Toni says:

    Thank-you for your post. I almost cried because you do feel like you’re a failure when nothing works, like you’re the one doing something wrong. I don’t think most people understand the “chronic” part and how exhausting and, at times, depressing it can be. Using terms like “chronic illness” help us remember that it is serious and not “just a headache”. Again thanks for reaffirming. Take care and be good to yourself.

  6. Thanks for the kind words and support. I hadn’t thought of this before, but I wonder if the people who criticize those of us who say we’re chronically ill with migraine have any idea how debilitating chronic migraine actually is. Things look very different on the outside than the inside, especially in the case of a highly stigmatized illness.

    Kerrie

  7. Jennifer Bee says:

    Thank you so much for your post. Although I struggle with different chronic illnesses, I could relate very much to what you were saying. During the time period when I was first off work, I was determined that I would be returning. I would say things like “my symptoms” or “my condition” but I had one doctor who was very involved in my care who would always refer to it as my “disability” or make reference to me being “disabled”. He is by far the best doctor I’ve ever encountered but I felt upset every time he used this language. One day it was too much and I broke down, telling him “I am not disabled. Maybe I have a disability but I’m not disabled”. We had a long discussion about why he was actually consciously choosing that language… he didn’t want to minimize my illness and he wanted me to realize that it’s okay to recognize how debilitating it really is. Until that point I had always thought of it as my weakness which was preventing me from returning to work. Now I understand that it’s beyond my control!!

    • Jennfier, it’s interesting that your doctor chose that language deliberately — and also incredibly kind and supportive of your experience. I’m impressed by anyone who gives that much through to a patient’s internal and emotional experience of chronic illness.

      And I’m glad the blog is helpful for you. I find myself increasingly interested in the commonalities of different chronic illnesses, especially the emotional experience.

      Take care,
      Kerrie

  8. Mindy says:

    This reminds me of the issue w/ the word victim…we need to admit to ourselves we’re victims (of chronic illness), but we don’t have to “BE” victims.

    • Mindy, “victim” is a word I absolutely won’t use. I just can’t separate being a victim of an illness and being a victim in general. I definitely see how the distinction can be made and that it works for some people, but I can’t embrace it for myself. It’s funny how language can be so personal. Thanks for your comment — I appreciate seeing a different perspective on a word that doesn’t work for me.

      Kerrie

      • Mindy says:

        I can fully understand as “victim” carries a lot of stigma. I guess I was just trying to say how we need to accept that it’s not our fault, it’s not that we’re doing something wrong, it’s just something that’s unfortunately happened to us. However, that doesn’t mean we have to wallow in self pity. We can accept our lot in life, yet choose to feel grateful for all the things we do have. (Glass half full instead of half empty) I try to do this as I know life could truly be worse, but of course it’s not always easy on the really bad days.

  9. Alayne Langford says:

    “Why “of course”.. I have not found peace yet, I still feel disempowered because of my illness. I am a prisoner in my own bedroom sanctuary and the most I can muster to go outside is for treatment. As you know, people do not understand unless they’ve been there, yet a little empathy goes a long way for me. I am angered by this illness and have to find a way to get past it, acceptance is powerful when you feel defeated. I am inspired by others who understand or at least try to understand that its NOT “just a headache”. Thank you for your post 🙂

    • Thanks for responding, Alayne. Your comment piqued my curiosity. I’m sorry you’re having such a hard time. Your description sounds much like my worst days of migraine; remembering them makes me shudder. Hang in there and take good care of yourself.

      Kerrie

  10. bureinato says:

    I’ve taken to calling myself neurologically fragile.

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