To the Girl Who 'Wishes She Was an Insurance Risk Like Me'

I was just having a chat with someone – light conversation, nothing serious. It wasn’t anyone I knew too well; we were acquaintances at best. Sitting in class, talking quietly, the topic of afternoon sports came up. It’s compulsory at my school – once a week, for physical and mental health. He asked which option I took. I explained, quickly and without detail (I find detail tends to culminate in a science lecture and a therapy session) that I didn’t do sports due to disability. I described myself – with a slightly awkward laugh – as “an insurance risk.” There were a few seconds of quiet, a manufactured lull while he absorbed my excuses.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Then, another voice chirped up. It was another one of the new students, another girl finding her feet. She had been sitting, listening, doing her work (as I probably should have been doing!). She was probably waiting for a gap in the conversation to speak, so she could join in. With a vaguely nervous tone, she said, “I wish I was an insurance risk.”

Conversation killer. Silence, then the slow shift of eyes towards textbooks, focusing on the questions, rather than what had just been said.

I get it. I really do. You were probably having a bad day. Maybe you were tired; perhaps it was intended as a joke. But it didn’t feel like that. It felt as if all the energy I put into simply getting out of bed, all the time I spent at appointment after appointment, all the tears I’ve cried because it’s all too much – it was all reduced to missing a few sessions you didn’t want to go to.

What, for you, is probably an afternoon to muck around (maybe doing some work if necessary, and avoid being out in the rain and cold) is time I spend sleeping and catching up on study that I’ve missed. I have to do this. It’s not a choice I make willingly.

I love the idea of doing sports once a week – running like I used to – before I keeled over on the side of the road and had to stop. It sounds freeing, fantastically fun. Unfortunately, it’s not something I can do anymore. Even if I could drag up the strength (from somewhere deep within me), I wouldn’t be allowed. I’m an insurance risk: a liability.

When you say you wish you were “an insurance risk,” you’re asking to be like me. You’re asking to be disabled, and I don’t think you understand the consequences of that. I may be pretty good at covering it up but it still impacts me so much on a day-to-day basis. You not recognizing that – even in a moment of humor – invalidates my disability.

I can’t tell you this in person. Your intentions were (presumably) good, and you’ve never said anything like it again. But part of me wonders whether, if you read this, you could begin to understand.

Thinkstock photo via dolgachov.