On Performing Illness

A few days ago a friend of mine posted on Facebook that she’d written a draft of the trickiest chapter of her book, something she was really pleased with. Then she went on to say that it was hard to work that long because she has long COVID and late-diagnosed autism.

Her comment made me think about how those of us with invisible disabilities feel we have to remind people that we’re not well. Because we don’t have a cast, or a scar, or anything physical to show that we’re ill.

We live in a productivity obsessed culture, so if we don’t produce we feel we need to justify why we don’t produce. Or at least, why we produce less. Our culture is also highly individualized: we valorize the power of the individual to ‘pull themselves up by their bootstraps’ and keep on keeping on no matter what problems they have–so why can’t we do that, to? Then there’s inspiration porn, stories of people who have ‘overcome’ illness or disability to build ‘normal’ lives that contribute to society. Contributing to society is inherently interpreted as producing something. Being productive.

These attitudes work against those of us with invisible disabilities. I can’t open up my skull and show you the place in my brain that’s broken (not even a psychiatrist could do that). Instead I try to explain my illness. Give it shape and weight. Show how it gets in the way of productivity and keeping on keeping on. Be clear about the fact that it will never be cured, so (sorry) I won’t be providing any inspiration porn.

But it goes against the grain. Society believes that you’re only ill if you look ill, and you can always get better. There is nothing you can’t recover from, whether that’s the loss of a spouse or the loss of a limb. The former being invisible. The latter obviously visible. You must be pretending if you have an invisible disability.

So we are forced to ‘perform’ our illness. To act out what it means to have a mental disability. I write this blog to remind myself—and others—that though I’m capable of many things, there are also many things I’m not capable of (right now driving is one of them). I don’t want to whine about my illness, but I want to make clear that it’s not all rainbows and unicorns and happy days. It’s rough, and that something only I (and maybe someone else with bipolar disorder) will understand.

For some people I can describe things until I’m blue in the face and they’ll still think I should ‘get better.’ But there is no ‘better.’ There is only ‘managed.’ Right now my bipolar is not managed. It’s a bit of a train wreck, actually. But I don’t want to write about it because I don’t want to perform my illness in public today. I want to keep my problems to myself.

So next time you see someone talk about not being well but you don’t see anything physically wrong with them, have some compassion and assume they have an invisible disability. That they’re not pretending to be ill, but that they really are. Just maybe not performing their illness as you’d like.