The role I never wanted to play

I’ve been contemplating a bit why people who have chronic invisible illnesses really hate being told that we don’t look sick.

It’s about performance. 

It’s about identity, and how we perform those identities. I have a chronic illness. I have an immune system that’s gone haywire. It can’t be fixed, it can only be managed. 

Management is performative. 

In certain situations, where you know you might struggle, it’s necessary to signal to others that you may need help, or space, or patience. One of my support groups talks about using props to signal your illness. Not all the time, but in places like airports. Bring a cane, wear a cast, wear a face mask. Anything that signals to people that something is wrong with you, so they give you more space. Dress comfortably, move slowly, make sure your prop is visible. 

But most of the time, spoonies, as chronic illness sufferers refer to ourselves, work really hard at performing normativity. Being able to get dressed and come to work and perform well is an achievement. I like to appear normal because it  makes me feel like I’m managing my disease rather than my disease managing me. It makes me feel like I’m in control. 

The performance isn’t just for me, though. If I give off “sick”vibes, I risk being discriminated against. I risk being shunned. I risk people becoming invasive of my privacy. I risk people making assumptions about my illness and making insensitive comments. I risk being shamed and blamed. 

So I perform. Everyday, I get up and I do my best to be functional. Most days, I manage to pass as normal. As not-sick. 

If we’re so good at appearing okay, you’d think being told we don’t look sick would be a compliment, right? 

When Shakespeare said “All the world’s a stage,” I’m pretty sure he didn’t have invisible illnesses in mind. Having a chronic invisible illness calls attention to all the ways we perform various identities, and how important those identity performances are for us to be able to process the world. Humans like to put things into categories – that’s how our brains are wired. When those categories are threatened, we sometimes resist. 

I have a chronic, incurable invisible illness. I belong in that category. However, I don’t look sick. I have no props. There’s nothing to signal to others, my audience, that they’re seeing a person with a chronic illness. That’s not how they perceive my character. 

I hate being told I don’t look sick because I hate the skepticism that underlies that statement. To me, it’s a compliment disguised as an accusation. It’s your brain trying to convince itself that I do, in fact, belong in the “person with chronic illness” category. It’s you asking me to prove it, to perform the illness in a way that is obvious and acceptable to you. Otherwise the narrative is confusing. 

Believe me, it confuses me, too. Having an invisible illness is a weird experience. I don’t really know how to embody it. I don’t know how to create a narrative that makes sense to others, so I do my best to act normal. To look not-sick. 

I do a pretty decent job of it, yet I hate being validated or complimented. I hate people who tell me that I’m not obviously a sick person as if that’s a good thing. That “no one would ever know” is a good thing, as if that part of my identity should be erased. I don’t want to erase it. I am a chronically ill person, and I always will be. 

Thus my contradiction: I hate your skepticism of my performance, and I hate your validation of it. 

I know this makes no sense. 

All I can say is, if someone tells you they have a chronic illness, just believe them. Don’t look for signals. Don’t seek proof. Put them in the category they say they belong in and accept that there are things happening that you can’t see. 

And please, don’t applaud the performance. This is not a role any of us ever wanted to play.

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