Thread by @WeAreDisabled

Today, I want to talk about growing up with a disability that nobody recognized as a disability. In fact, not a single one of my doctors so much as breathed the word disabled until I was 19 and signing paperwork to enroll me in FMLA so I wouldn't get fired if I had to miss work.

Before I could even talk, I knew how to pop my own elbows back into place, because dislocations were that frequent. "But she'll grow out of it," said the doctors. Then, I learned to talk and frequently expressed that I was in pain. "It's just growing pains," said the doctors.

Then, I began to fall. My ankles would roll sideways at a 90-degree angle and I would fall. Usually when I was just walking, but sometimes even if I was just standing still. "It's because your growing," said the doctors.

When I entered elementary school, I was damn near on a first-name basis with the school nurse, because I would get several, severe migraines a week. She knew if I came in, I needed the darkest, quietest place she could create for me and wait for me to throw up.

I was terrified of playing on the monkey bars because I didn't have the strength to ever make it all the way across, and when I inevitably had to drop down, the pain that shot up my body was excrutiating. But I also felt that same pain when I was running or jumping at all.

So, even in elementary school, a doctor prescribed ankle braces for both ankles and wrote a note to my gym teacher saying that I shouldn't run or jump. I frequently had to sit out of activities on doctors' orders, but clearly, that doesn't qualify as a disability...

The first time I fainted, I was in the shower and it naturally scared the hell out of my mom. I was rushed to the ER. "It's probably just because she was washing her hair. Some kids faint when their hair is touched and it's no big deal," said the ER.

I would then go on to faint pretty regularly. At the height of it, I would faint several times per week while I was in school. Oddly enough, my elementary school nurse got a job at my high school, and OF COURSE she remembered me.

None of my gym teachers were creative enough or cared enough to try to figure out alternative exercises for me. They just told me to walk around the school for the entire gym period. At one point, they gave me a pedometer to prove I was actually walking after I left the gym.

I'm still a upset that I never properly learned how to exercise in a way that accommodates my mobility needs. I was in middle school the first time I needed to wear a back brace. When asked why I was wearing it, I didn't have the language, because I didn't fully understand

A doctor was still telling me I had growing pains AFTER they told me that I was done growing. My fainting evolved to include shaking a convulsing. Not a full seizure, but seizure-like if you saw it. No explanation. Just live with it.

At 14, a doctor told me that pregnancy might be complicated for me. Just told me to keep that in the back of my mind to ask questions about later in case I wanted to have kids eventually. By this point, every doctor I ever had had already given up on physical therapy.

That's another thing. I was in physical therapy for YEARS. Starting really young and continuing with no positive results whatsoever. Physical therapy, braces, doctor's notes to get out of gym classes, and nobody ever considered me disabled.

In high school, some of my classes were upstairs, and the only elevator was locked with keycard-only access. I had a doctor write a note to ask the school to get me that access. The school pushed back on that for some unknown reason...

Since they didn't want me using the elevator, my doctor wrote a note saying he didn't want me wearing a backpack anymore. The teachers refused to let me keep a copy of my books in class in a copy at home, so the school's solution? Have a classmate carry my backpack around for me.

I seriously had to pick a friend who they allowed to leave class a few minutes early so they could walk to my class, grab my backpack, and walk with me to my next class. And then that classmate had a special note that allowed them to get to their class a little late.

Is this internalized ablism within the medical profession? I don't understand how I had doctors recognize that I had all of these accessibility needs but never actually considered me disabled. Was it just wishful thinking that I'd genuinely grow out of it?

I began working young, and I had multiple jobs. I KILLED myself to be there and be on peak performance for years. But when I was 19, my symptoms were getting worse as they had been doing for years. The doctor didn't bat an eye signing FMLA paperwork. No problem.

I honestly expected more pushback, because I didn't even have a proper diagnosis yet. They were signing the paperwork on a history of symptoms, alone. Fast forward a few years. I'm married and self-employed (FMLA means you won't get fired, but you also won't get paid)

I went to a music festival and by the end of the night, I had fainted and my entire body was in SO much pain that I physically couldn't get back to our car that was parked so far away. The medical tent called a golf cart to take me back to the car.

Telling my doctor this story, she decided to write up paperwork to get me an accessible parking placard. "But only for 6 months. Then we'll see if you still need it." During that appointment, she also wrote me a prescription for a cane.

The weirdest part is all of my schoolmates who contact me to say they never knew I was disabled. And, technically, I guess I didn't either, but....I was sitting out of gym classes. I was wearing back braces. I had to have a friend carry my backpack. How did this not occur to us?

People talk about "invisible disabilities". But I don't think mine was all that invisible. Most classmates surprised to see me talking about disability saw me faint repeatedly, they saw that I had a brace for almost every joint in my body, they knew I sat out of gym class...

In my case, it wasn't nearly as invisible as anyone is making it out to be. At what point do we say that people aren't seeing the disability not because it's invisible, but because they just don't want to? But I guess if my Dr wouldn't even see me as disabled, who would?