The Inescapable Jail of Chronic Illness

My commute home from work has become a choreographed dance routine, a formation composed of transportation interspersed with side trips to public bathrooms. The timing works perfectly–step off the train, waddle to the bathroom, and get back just in time to catch the next train.

It’s one of the many routines I’ve developed to cope with being in an active period of my disease–something which Caitlin Shetterly is also familiar:

When a person is sick – and chronically sick – nothing is normal. I have to say, I felt a bit like Christina in the famous painting by Andrew Wyeth – everything I longed for seemed just out of reach. And I was at such a tender time in my life – my son was a baby, I’d just handed in a book, I had friends and a family and a husband I wanted to be close to – and yet I felt boxed in by this illness that was like a kind of private, inescapable jail.

Yes–that is exactly it. So boxed in, that private life which is so narrow and utterly impossible to share with others. The routines and coping mechanisms we build up to function in the (brutal) real world, which most of the population would consider weird or pitiable or crazy. And the absolutely painful realization, every once in a while, of how different we are.

I’d really like to go hiking. It’s been months since I’ve been. But to do so now would be foolish, inviting accident and embarrassment. There are no public restrooms in the foothills of Mt. Hood.

If a friend invites me, I’d have to say no. I could try to explain why, but this sort of environmental micro-management is almost impossible to explain to people who have never lived with or cared for someone with a chronic illness that requires outsmarting at every turn.

I work within my own limitations–and try to do so cheerfully–but I recognize that they do prevent me from living an unfettered life. That life exists–I can see it on the horizon, especially on good days–and I can only dance towards it.

But I never quite get there.



The rest of the article is worth a read, too, for reasons having to do with propaganda, personal experience, and science–more on that later.

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