What It’s Like to Live With EDS (Because Clearly People Still Don’t Know)

Yesterday, I found out that a friend who shares my illness, a friend who was instrumental in my pursuit of diagnosis and proper treatment and who is a publicly visible advocate for disabled people, was being stalked by someone who accused them of “faking” and “has a friend who is writing an article about it.”

The “proof” that my friend is faking their illness? Sometimes they stand up to take selfies. Sometimes they go to see a band. They have tattoos even though EDS affects the skin.

In short, they do things that most people with EDS do, when they can. We can’t always, but when we can, we post about it online because this is the life we want people to see us living. Because we can’t tweet about our aches and dislocations and accessibility nightmares all day. No one would want to be friends if we did that, and we know it. So we cultivate carefully, and try to show as many “good days” as possible, even if a good day only lasts three minutes.

Sometimes I save pictures and stories instead of posting them right away. I wait for a day when I can’t leave my bed, so I’ll have something to talk about while I’m applying ice packs and heating pads and medications. The pressure to seem normal and fun is enormous. I am working with fewer materials than most.

If you go around trying to poke holes in people’s stories of medical journeys, thinking that you know what life is like for them and how it should look on the outside, I want you to imagine something for me.

Imagine you got a car for your eighteenth birthday.

The car looks good, but it has some problems. Sometimes the A/C quits. Sometimes it stalls. It pretty much always shudders and knocks, but you and your friends all get used to that. You hardly notice it anymore. Over time, though, you start to think that somebody rolled back the odometer on this beast; it seems to have more frequent and serious problems than your friends’ cars. When you take it into a mechanic, it’s never just the brake pads that need replacing, it’s always the discs. The mechanic seems a little baffled by your old-new car. They’re still happy to charge you, though.

You can’t afford a new car, and you can’t really afford to keep taking this one into the shop, either, so you go through a lot of duct tape and Bondo. You learn to do some work on it yourself, even though you don’t have all the tools. You spend a lot of time washing it and touching up paint to make it look presentable. Once in a while, someone compliments you on it, and you’re a little baffled because you know how it runs, but they don’t, so you smile and thank them.

At some point, you decide that even though your car is unreliable, you want to take a trip out of town. It breaks down in the driveway. You stay home and don’t mention your disappointment to anyone.

When you take it back to the mechanic, he says things are getting worse and will be even more expensive to fix now, but you don’t have a choice. You get the worst of it fixed. And still, it rattles and shakes and the driver’s side doors won’t lock and sometimes it breaks down for no reason.

Now imagine you can never get out of the car.

 

***

 

There is never a reason to interrogate a stranger about their disability.

One thought on “What It’s Like to Live With EDS (Because Clearly People Still Don’t Know)

  1. Well said!! As the owner of a body that looks okay (on the rare occasions it’s in public) but doesn’t work very well, I can relate to this. I wish I could do a “Freaky Friday” swap with all the Judgey McJudgeypants out there for just.one.day.
    Your friend, and you of course, have my full support. 💪✊💌

    Like

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