How I Started Telling People I Have EDS

By Crystal Lindell, Columnist

One of the first people I told about my new Hypermobile Ehlers-Danlos syndrome (hEDS) diagnosis was a local politician.

I was still trying to get a feel for how the letters EDS tasted on my lips. How they felt in my breath. How people would react when I said them. And truth be told, this was when doctors were telling me I probably had it, but before I was officially diagnosed — that came later.

He didn’t know he was among the first people I told — that he was a test case. But there we were, at a local Democrats meeting and he asked me about medical marijuana, and I decided to go for it. 

“I actually have EDS,” I said. “My thumb touches my wrist, want to see? Yes, marijuana should be legalized. No, it won’t help everyone.”

He had the response most people seem to have.

“Maybe it will get better?”

“It won’t get better,” I told him.

“Yeah, but maybe it will! Once, I was sick and then I got better. So maybe you will get better.”

“It won’t.”

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I get it. Nobody wants to really understand that being born in the wrong family is enough to sentence you to a lifetime of weak ankles and debilitating pain. It’s hard to understand that. It’s hard to accept that. It’s a lot easier to believe someone might get better.

It’s been hard for me to accept that. And harder still to say it out loud.

I have found though that it feels easier to lay the news on random acquaintances. The Tinder guy I met once. The woman who expertly bleaches my hair at the over-priced salon. The clerk at Walgreen's ringing up my pain medications.

There’s something to be said for telling random strangers something so overwhelming. It greatly reduces the consequences of your words — and of their reaction.

My initial instinct was to tell the people closest to me, my inner circle, first. But that quickly become completely overwhelming. Those people care way too much about me. They take it way too hard. It cuts too deep.

No, strangers are much better. They are morbidly impressed with my thumb to wrist trick. They are able to distance themselves from the depressing, long-term aspects of the diagnosis and ask horrifically, wonderful mundane questions like, “What does EDS stand for?”

And they never stop to think about what it might mean for my future. That’s my favorite part. Because the future looks very scary right now. And I need to do my best to stay in the present.

I have forced myself to pepper in the tougher conversations with the people who care about me. The late-nights over tears with my best friend wondering what this might mean for my future. Asking things like, what if I can never kids? And even if I can, do I want to risk passing it on to them?

Will I need assisted care sooner than most? How will I ever explain my health to future lovers? Why did it take so excessively long to get the diagnosis? How much of my life was wasted waiting for it? What could have been different if only I had known sooner? Will my siblings need to be evaluated? And what happens if they have it too?

All the things that fill me with grief and despair if I let them.

But strangers never ask questions like that. And even if they do, they don’t actually care about the answers that much. And I love that about them.

Eventually, hopefully, it will just become one more things about me. I’m blonde, I don’t like Trump, I love Burn Notice, I eat too much Taco Bell, and I have hEDS. It’s part of who I am, but not the whole part, or even the most important part. Just another casual fact in my Instagram bio next to things like, “I like lipstick.”

And no, I won’t actually ever getter better, but eventually, hopefully, I’ll get better at having hEDS and telling people about it.

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Crystal Lindell is a journalist who lives in Illinois. She eats too much Taco Bell, drinks too much espresso, and spends too much time looking for the perfect pink lipstick. She has hypermobile EDS. 

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.