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"Chronic Illness Means Never Being Able to Forget"

Posted May 10 2010 6:49pm
Thus was the title of this week's Cases piece in the NY Times . The author wrote about not being able to donate blood after a diagnosis of ulcerative colitis (i.e., Crohn's disease), despite her illness being in remission for several years. And oh how true it is for those of us with eating disorders, too!

Because I am entering Year 3 of a robust remission, I rarely think about my disease. I don’t spend time worrying about another attack on my colon by my immune system. I don’t contemplate the fact that azathioprine increases my risk of lymphoma and liver damage — or that the only true cure for my disease is surgical removal of my entire large intestine.

But the rejection from the Red Cross revived all that mummified information. It reminded me that my body is rebellious and will always require diligent medical management.

And unfortunately, that’s how chronic disease works, at least for me. Just when I think I have conquered the emotional challenges of incurable illness, something reminds me that those challenges are never fully conquerable.

It’s frustrating. I find the mental fortitude necessary to stop thinking about my increased risk of colon cancer. I convince myself I can live without my large intestine if it comes to that. I tell myself that I am like any other 32-year-old, ignoring the many difficult questions I will face if I want to have a baby.

And I can believe it, all of it, because while I am in remission, I don’t have to confront my disease. Until something happens to remind me that I am not like most other 32-year-olds, that my ulcerative colitis is inescapable, my shadow.

Then I wonder if maybe I am just feeding myself lines to get through the day. And I panic. And all my emotional progress feels lost.


That's the thing about eating disorders and other chronic illnesses: we can recover, we can move on, but we can never forget. I can't go back to eating without a care in the world because the stakes for a missed snack or missed meal are infinitely higher. I have to think twice about engaging in certain activities out of fear they might shatter my already brittle bones. This hauting isn't my whole life or even the majority of my life, but there is a profound sense of grief when you come to know that you can't escape your past.

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