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To the Doctor Who Missed My Ehlers-Danlos Syndrome

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To the doctor who missed my Ehlers-Danlos syndrome (EDS):

You are the one who should’ve known.
You should’ve seen it.
But you missed it.
Like the ones before, like the ones after.
It took a stranger to tell me the danger.

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

“Hypermobile” was a word you used.
“Just a bit bendy” was the phrase employed.
But you acted like it was all fine.
I could do magic tricks — nothing dangerous.

My knees went backwards, but you didn’t care.
My shoulder out of place, you just tightened it down.
My knees out of place, you tightened them too.
I’m not some bolt you can just screw.
I’m a human. In pain. A woman. Ignored.

Other teens my age weren’t on a first-name basis.
With doctors like you — or with doctors at all.
Most couldn’t spell “orthopaedics”
… or is it “orthopedics”? You tell me.

“It’s just growing pains,” you reassured us. They were normal.
My high pain tolerance comes from my mom.
I’m not good at saying “ouch” when things hurt all the time.
But “growing” isn’t supposed to hurt, is it?
Growing is normal, not painful. Not really.
Not this much, anyway.

My spine was twisted, but it was minor.
I was never taught holding a pen would hurt my fingers.
How many sprained ankles is someone my age supposed to have?
Maybe a few less than I, but what did you know?
Nothing, evidently.

I’m sorry that my case presented in odd manner.
I’m not skinny. I’m not “stretchy” with my skin.
I’m sorry my story didn’t match your half-hour lecture.
Or maybe it was brought up for 10 minutes? I don’t know.
You sure didn’t know.

Did you know it’s connected?
To the food I couldn’t eat?
To my eye that crosses?
To my heart that ticks too fast — that was malformed?
Did you know?

If I had your address, I would tell you.
I could mail you all the papers.
To make sure you don’t miss it again.
Let my story be a reminder, a haunting.
To make sure you catch it earlier in your patients.
So that they might not suffer, at least not as much.

Thanks by the way, for never getting me on pain meds.
Nothing steady, only over the counter.
“Try Advil,” you said.
I took so much Advil for so many years.
My organs probably hate you too.
Thanks again for that.

But a stranger, another orthopedic doctor.
A stranger saw beyond the hurt hip. Read my file.
He read my file.
As in, the whole history that no one seemed to look at before.
The history you should’ve known. It was right in front of you.
He read my history, and considered everything. Not just my obvious pain.
He connected the dots and had me do “tricks.”

Can my thumbs touch my arm? Yeah, isn’t that normal?
Can my elbows bend backwards? Yeah, my knees too.
Can my pinkies go backwards? Well, one can.
Can I touch the floor?
The floor. Can I touch it?
I laughed hilariously. Of course I could!
As my palms lay flat on the cold, hard floor… he said it.

He finally said it.

The words I needed.
The justification I craved.
Something was wrong with me.
It wasn’t all in my head.
It wasn’t my weight.
It wasn’t just “growing pains.”
It was …
“I think you have Ehlers-Danlos syndrome.”

Originally published: February 15, 2019
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