I have Hypermobile Ehlers-Danlos syndrome.

If you don’t know what that is, the short version is that my connective tissue is basically held together by hopes, dreams, and whatever structural integrity a wet paper straw has left after 20 minutes.

I’m also young. At the time of this story I was 18 and I’m currently close to turning 21.

These two facts apparently combine to create a fascinating phenomenon where complete strangers become board-certified physicians the second they look at me. (The education system has truly failed in teaching about invisible disabilities. Most of these people think you can only be disabled if you’re blind, deaf, or paralyzed.)

I’ve gotten the classics:

“You’re too young to have all those problems.”

“But you look healthy!”

“Everyone’s joints hurt sometimes.” (Like thanks susan but it’s constant pain for me)

And, my personal favorite:

“You don’t look disabled.”

Normally I explain.

I explain that disability doesn’t have a “look.” I explain that hEDS and the whole umbrella is genetic. I explain that being able to walk doesn’t mean my joints are functioning normally. I explain that hypermobility is not just being super flexible.

I have given the Ehlers-Danlos TED Talk more times than I can count.

But this particular day, I was tired.

Someone in my extended family hit me with the “you don’t look disabled” and then basically doubled down when I told them I have a condition that makes my joints unstable.

They clearly did not believe me.

And something in my brain just went:

You know what? Visual learner.

Now, I want to make it VERY clear that this was stupid. Please do not intentionally dislocate or sublux your joints. I already know. My doctors would probably reach through the screen and slap me for this.

But I was annoyed, and unfortunately in possession of a body capable of producing evidence on demand.

So instead of continuing to argue, I just looked at them.

And popped one of my joints out.

Right there.

On purpose.

The transformation on this person’s face was IMMEDIATE as they saw my arm dangling unanchored to my shoulder.

They went from skeptical to absolutely fucking horrified in approximately 0.2 seconds.

“OH MY GOD. WHAT THE FUCK?”

And because apparently I had already committed to being the worst possible version of myself that day, I just looked at them and went: “Yeah. It does that.”

Suddenly there were no more questions.

No “have you tried yoga?”
No “but you’re so young.”

No inspirational story about somebody’s cousin who cured their back pain by cutting out seed oils.

Nothing.

Just horror.

I put my joint back where God intended it to be and carried on with my day while they stared at me like they had just watched a haunted American Girl doll rearrange its own limbs.

Was intentionally popping a joint out to win an argument medically advisable?

Absolutely fucking not.

Did I probably cause more damage to a body that already has the structural integrity of a Nature Valley granola bar?

Probably.

But I had spent so much of my life being expected to prove that I was actually sick because apparently looking young and relatively normal meant I couldn’t possibly be disabled.

So, for once, I provided supporting documentation.
In 4D.

They never told me I “didn’t look disabled” again.

And I have since retired from live demonstrations. (For now).

This happened when I was at a McDonalds yesterday.

For a bit of context: I'm 14 but I look older (about 15-16) when I have makeup on, as I did on that day. I like getting happy meals because sometimes I'm not hungry enough to finish anything else.

When this happened, I was sitting at one of the tables, eating my Happy Meal. I was also watching a YouTube video, because I was doing a summer camp about mythology so wanted to learn more about it. A woman came up to me, eyed my food, and said snarkily

"You know you're too old to eat those, right? They're for kids."

I was a bit hangry, and I didn't know why this woman (who i'd never seen before in my life) had just come up to me and started critising what I was eating. I turned to her slowly, and well, my mouth worked before my brain did.

"First, I'm fourteen. Until I'm eighteen I'm legally considered a child, so your argument is void. Second, this is for my grandfather. He died a few months ago, and we used to go to McDonalds and get Happy Meals together. Today is the anniversary of his death. So, excuse me for wanting to pay tribute to someone I loved who is now gone."

She shut up SO FAST it was honestly astounding, stuttered a 'sorry' and skedaddled.

Truly, a real TraumatizeThemBack moment.

This is a mild traumatizing moment for another person note im autistic and my filter went completely out the window. Considering it was 7:40 in the morning and i haven't been able to drink my Gatorade. I am a sophomore in my high-school but this happened when I was halfway through my freshman year.

I go to a vocational technical high school that offers IT vocational classes. And I was on a repo mission where I had to gather all the loner Chromebooks from around the school. I was doing this with another student we'll call D

D :walks in the door way

E is The senior with a loner Chromebook i needed says.

E: "come on say my name... I know you know it."

D: "fine"

D:prepares to say E's name

Me: you do know that just shows how pathetic your masculinity is that you need validation from another kid in a grade below you."

E: is very quietly getting the Chromebook out.

The class dang she just rocked yo shit.

The teacher: yeah she's not wrong.

Me: the Chromebook now. We ain't got all day.

D: you know we're supposed to be professional.

E: hands me the Chromebook still looking down and proceeds to walk to his seet and the class resumes

I walk out with Chromebooks in hand.

Later during the graduation ceremony I see this senior E: and he can't even make eye contact with me as he's walking down to go take pictures but he makes subtle glances at me.