The Shame of Chronic Illness

The Shame of Chronic Illness

When I recently read the phrase, “I’m embarrassed to be sick”, it made my stomach clench and my breath catch. That’s exactly what I’ve been feeling: this vague sense of social unease even with close friends, a reluctance to be seen or even talk to people–especially those that knew me before I became chronically ill.

At the age of 55, after a lifetime of seemingly unrelated physical complaints and inexplicable pains that kept worsening, I was finally diagnosed in 2012 with Ehlers-Danlos Syndrome, a genetic flaw which leads to defective connective tissues. This results in chronic pain and many other health problems, as body parts aren’t held together properly, joints dislocate spontaneously, tissues stretch or tear, lose elasticity, and wear out early.

I am ashamed of being sick. I spent my previous life trying to prove how tough I was, declared my independence early, made my own way successfully… and now I’ve lost it all.

Success was the first to go. My productivity at work declined until I had to give it up in 2008. I forfeited the income that made me self reliant, and now I’m dependent on SSDI. My toughness collapsed when I could no longer deny how much pain I was in, and how tired I was all the time.

I lost the defining characteristics of the first 50 years of my life. Now I’m weak, frail, and vulnerable. I’m ashamed for not being a productive citizen and feel like a fee-loader because I depend on government benefits. I’m ashamed to be giving in to pain and fatigue, to have lost the battle I was supposed to win, to have lost the blessing of good health and vigor.

In our competitive society, chronic infirmity or illness is viewed as a personal failing rather than the random stroke of fate that it is. If my pain and disability were temporary, I would get sympathy and accommodation, but incurable suffering makes most people uncomfortable. They become impatient and distant, and I detect an undercurrent of belief that I must have done something to deserve this – something they can avoid doing.

If all the people not yet affected by chronic illness acknowledged all the undeserved pain in this world, they would be forced to confront their own vulnerability to the same forces. Instead, we all prefer to believe we have the power to prevent such disasters in our own lives. Sometimes I even catch myself thinking, “If you’re so smart, why did you let this happen to you?”

In my day-to-day life, when I’m out and about among “normal” people, I try to disguise or explain away my pains, put on a brave face, and hide my feelings of failure and shame. It fools everyone but me.

-previously published 5/15/13 on KevinMD.com as “In today’s society, chronic illness is viewed as a personal failing

15 thoughts on “The Shame of Chronic Illness

  1. joynpain2

    Thank you for writing and making it personal. I COMPLETELY agree with you. We shouldn’t feel ashamed because we didn’t ask for any of this to happen to us, but most of us do. The blame game is a daily battle with me. My brain knows it’s not my fault, but after all this time I still haven’t been able to convince my heart. You are not alone Zyp.

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  2. teeks55

    Ohmygosh, I just saw this re-blogged on JoynPain2’s blog. My heart broke as I read it. I think this could be a post in any “chronic illness person’s” blog. We all endure the shame. The stigma. We are no different than anyone else, except we were unlucky enough to draw the card that changed us into something unrecognizable to others, and to ourselves. Now we truly are different….from the people we used to be and from the ones other people used to know. How can we explain it to the normals? How can we explain it to ourselves? It is not only chronic, unrelenting pain we endure. It is much more than that. It is a complete upheaval of all that we once knew. Every part of us has changed. Body, soul, spirit. I will re-blog this one. xoxo

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  3. Zyp Czyk Post author

    Thank you so much for all your support! “Normies” just don’t understand what it’s like to never be “normal” in our society’s view. As our society ages, there will be more and more folks dropping out of “normal” and into a life of chronic illness and/or pain. Then many who currently pride themselves on being tough and think we’re just chronic whiners (as I once did) will be forced to adopt a different opinion. Life will look quite different when they eventually find themselves to be another one of us: the sick, the injured, the hurting.

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  4. Pingback: House Kiron | The Shame of Chronic Illness

  5. BirdLoverInMichigan

    Today’s 4/14/15 and I’m just now discovering this post. Excellent!
    I’m in that time of life where I’m more restricted from the world and no longer able to work. I never thought EDS and fatigue would alter my life so dramatically, but despite my best efforts, it has. You get what you get – it is what it is. At the same time, my spiritual life (faith in Christ) has only grown, and continues to grow with each passing day. So in the eyes of the world I’m not the person I used to be, but I know I’m becoming more of who I was meant to be. There’s a phrase about living as if you were in “African time,” where people aren’t on time but instead in time. Borrowing from that thought, I’m living in spiritual time, which I’m only now able to understand. So yes, I’ve lost a lot, but I’ve gained even more.

    Liked by 1 person

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    1. Zyp Czyk Post author

      Your perspective is inspiring!

      I’m not there yet, but your story confirms that I’m on the right course and encourages me to keep working on it.

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  6. Pingback: What is the purpose of shame? | All Things Chronic

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