One of the things I hate very much about having a chronic/intermittent illness is that I can’t predict when I’ll be well enough to do the things I’d said I’d do or that I’d like to do, and when I’ll have to bail because of poor health. Aside from not being able to have a full-time job and having to miss out on many social occasions, there’s also the guilt that comes with the part of our culture that says to push on through illness and to just try harder — everything will work out in the end.
No, it won’t.
I spent years working myself into the ground, working so hard to disprove people who thought I was making symptoms up or trying to avoid work, that I ended up much sicker, and sick more often, than I now know I could have been.
In order to minimize the amount of time I spend being sick takes a lot of effort. I have to plan certain aspects of my life not only around when I’m going to get treatment, but around statistical calculations in my head about how frequently I’m going to be unable to work as my medicine wears off, and how likely it is that I’ll get sick for x number of days between now and some time in the future. I have to pay close attention — while avoiding getting too obsessive! — to how I’m feeling mentally and physically, and what I eat, and how much exercise I get, and how much sleep I get over periods of hours, days, and weeks. And I have to juggle my erratic freelance work schedule and my partner’s schedule on top of all of this, too. In other words, I have to be very organized, very flexible, and on top of many things all the time to get anything done.
It also takes a certain amount of effort to target paid work that brings in maximum income for minimal hours, with the tradeoff that, during the hours I work, I must put in a lot of effort and concentration. So when I’m not at work, I’m often “at work” recovering — so that I can continue to work.
And still, not being able to stick to a regular schedule makes me feel like less of a person. The narrative goes that anyone who can’t put in the hours, or show up on time and on a regular basis, is disorganized and/or lazy. I’m neither disorganized nor lazy, but I think that people are going to look at my lack of consistency in scheduling and think that I am.
People familiar with my work but not my personal life often remark that I should have a more prestigious job than I have — and they may not mean to imply that I’m a failure, but the inference is easy to make.
Years of having my health concerns brushed aside and being told I was a malingerer, while I was suffering from obvious Crohn’s symptoms, feed into this idea that I’m not really *that* sick. Plus, I look normal. I look especially normal on the days that I’m well enough to be out and about. When I’m not feeling well, I’m at home resting or sleeping. Only the people closest to me know what’s really going on. And those people know that I would rather have the energy to get outside and get things done than to have enforced quiet time. But only by slowing down and learning to recharge when I have to can I have a chance to work and play the way I want to.
If society’s ideal is a workhorse, I’ll just have to get used to being a cat. You can find me over here, asleep in a tree.