What Medical Students Need to Know About Ehlers-Danlos Syndrome

First of all, you probably won’t learn about Ehlers-Danlos syndrome (EDS) unless you’re a rheumatologist. You might hear about it in passing, it might be mentioned, or someone might tell you it’s fake – but that might be all you know about it. And I know that.

What you need to know is that just like with everything, there is a person behind that diagnosis. I am a 14-year-old boy just trying to live my life. I want to dance ballet. I want to be able to paint and write again. I want to play basketball. I want to be able to walk without ruining my arm joints from leaning on my crutches too much. I want to be able to live.

What you need to know is that I’m not trying to make your job harder. When I say getting off my crutches isn’t my goal, it’s not because I’m being difficult, it’s because my knees dislocate when the extra weight isn’t taken off of them. When I say I dislocated my shoulder reaching for something, I’m not exaggerating, it really happened and it does really hurt.

What you need to know is that I know I’m rare. As in, one in 10,000 rare, just for my subtype, which is the most common. That doesn’t mean I’m faking, or that I’m trying to get drugs, or that I’m a whiny teenager. I didn’t look in a medical dictionary and decide to fake this specific syndrome to get attention. I’m struggling, and I need your help to get better.

What you need to know is that I likely know more about EDS than you do, and you need to accept that for us to get along. If you tell me I can’t dislocate my knee without severe trauma, we’re done, because I did dislocate my knees by walking and I do it multiple times a day. If you tell me I can’t have skin like that, we’re done, because I do have skin like that. If you tell me it’s your job to get rid of my pain, we’re done, because it’s called a chronic condition for a reason. If you don’t listen to me, we’re done, because it’s my body and it’s my condition and you will listen to what I have to say. I joke that I’m usually the smartest person in the room even when I go to the doctor, but it’s not really that far off when it comes to EDS.

What you need to know is that you can’t separate me from my disabilities, which is why I had neon pink crutches and why I correct you when you use person-first language. I’ve been sick for longer than I can remember. There is no me without a disability. I got a traumatic brain injury when I was 1, and another when I was 2. I’ve had irritable bowel syndrome since I was 9. I’ve had fibromyalgia since I was 11. I was born with Ehlers-Danlos. And that’s just the physical things.

What you need to know is that you can’t learn everything from reading and going to school. You need to listen to me, because I know what it’s like to have this condition and you likely don’t. What you read in a textbook doesn’t all apply to me, because I’m an intersex person of color teenager with multiple other disabilities and illnesses.

We want to hear your story. Become a Mighty contributor here.

Gettyimage by: tonefotografia

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

family at christmas

I Love Celebrating the Holidays, but Please Remember I'm Still Chronically Ill

The holidays are often a difficult time for people with chronic illness and disability. With so many people around, often people you don’t see often, you may feel pressured to “put your best foot forward.” But that’s hard when neither of your feet are particularly stable. I cannot attempt to say what it is like [...]
family eating christmas dinner

How My Illness Taught Me to Focus on Presence Rather Than Presents During the Holidays

Before chronic pain nestled into my body like children nestled all snug in their beds at Christmas, I enjoyed every part of the holiday festivities. I was someone who enjoyed shopping and spending way too much. I also enjoyed decorating, cooking, listening to music, wrapping presents, watching “It’s a Wonderful Life” while drinking hot cocoa [...]
sandy beach

When Your Illness Has Been Ruling Your Life Without You Knowing It

Three days before my 30th birthday, I hit a wall. I was nearly five months in to my initial diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). I was 11 days removed from the geneticist-confirmed diagnosis. I was spent. I had no good energy left to give, to myself, let alone to anyone else. Years ago, I [...]
A coffee machine pouring hot liquids into a coffee mug.

Why Gadgets Make My Life With Chronic Illnesses Easier

I’ve recently noticed a lot that I, and others with chronic illnesses, can be judged for having lots of gadgets around their home – from hot water machines to robot hoovers. People can be really critical of us for spending money on something they believe to be nonessential, just a toy or novelty. But for us [...]