Published: 17/02/2023 Tags: Stories

A sense of identity. A community. A voice.

Party tricks. Circus acts. Contortionist. In elementary school, I’d proudly show off my hypermobility as I hyperextended my limbs and dangled my feet over my head. I would touch the floor with ease, bend my legs the “wrong” way, and press my thumbs to my wrists. My classmates would gather around in pure amusement and attempt to copy. Flash forward six years later and the only thing I can show off is the coveted high school elevator key.

The progression from being a flexible child to a disabled teen was a slow and complicated struggle. The occasional dislocation during athletics transformed into a frequent event. However, despite any measure of caution, dislocations still occur regularly. Now, I must think through simple activities such as walking and sitting down, or I have a greater risk of injury. My personal favourite is subluxing my right shoulder after a jump scare during a horror movie. Such a proud moment in my life. In addition, pain resulting from incidents and surgeries became long-term and severe. Even as I sit here now, I am distracted by a strong, throbbing ache exuding from my joints, muscles, and spine. And God, I am so tired.

The worst part is no one can tell. My daily battles go completely unacknowledged by society. I have no wheelchair or crutches to verify my tale. No physical deformity that alerts people of my incapacity. And don’t get me wrong. I am not hoping for sympathy, attention, or pity. Just compassion and belief. Unfortunately, all I have is my word, and the word of a sixteen-year-old girl does not go very far.

I have always been a clumsy child. Very injury prone. I have more scars on my body than one could count. I was that girl in school who was always wearing a knee brace or on crutches. Still, nothing could have prepared me for what was to come.

My first dislocation was in fourth or fifth grade. My right kneecap. I can’t say that I remember much about the event. I recollect playing soccer, taking a turn, and it just happening. The next thing I knew, parents were shielding their children as I lay immobile on the grass field. The red and blue flashing lights eventually appeared, and, one hour later, I was deemed “okay.”

Three dislocations followed within a year.

I saw specialist after specialist. They said, “You’re knocked-kneed… that’s the cause.” Two surgeries pass. Symptoms worsen. They correct themselves, “Weak muscles.” Years of physical therapy. Symptoms worsen. Neuro, cardio, ortho, ER, sports-medicine, surgeons, nurses, CT scans, MRIs, and x-rays. Each time, I had to sit through the dreaded words, “Refer her to-”

I felt lost. Some of the healthcare workers felt lost. My own body was working against me. I didn’t know what was wrong with me. Everyone was speaking for me. I was a puppet at each appointment as if everyone knew my own struggles better than me. And then, one day, a geneticist changed my life with a single sentence. “You seem to display symptoms consistent with hypermobility Ehlers-Danlos Syndrome.” A diagnosis. The holy grail for those likes me. A sense of identity. A community. A voice. Finally. Except, still no one is listening.

I remember one incident where I was camping in the woods with a close friend and her family. I left my jacket in a field out of sight from everyone else and quickly ran over to get it. I dislocated severely a few feet away from the jacket. Fell to the ground. Unable to move. Excruciating pain. I screamed. Loud. The closest person to me was a hundred feet away. A little kid. I called out to them. They heard me. And dismissed me. I think about that moment a lot.  I feel like that when I talk to doctors sometimes. To my parents. Crying for help, but no one does anything. What can they do?

I’m not going to sit here lying about how my disability made me a stronger person to make everyone more comfortable because it didn’t. I am not stronger. I am mad at the world. And I know that it is just going to get worse. And I am still coming to terms with that. And that is okay.

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