For as long as I can remember, I’ve been different from everyone around me. My diagnosis, Ehlers-Danlos Syndrome (EDS) is a very rare and often unknown medical condition; it is so rare that it affects around only 1 in 20,000 or so, and it is so unknown that I’ve encountered many doctors who haven’t even heard of it. EDS can be different for everyone who has it, but it is mostly related to joint hypermobility and skin fragility. To put it super plainly, I bruise easier than a peach, my scars rarely heal completely, and I have to be extremely protective of my joints.
Recently, it came out in the news that singer, songwriter SIA has this same diagnosis. My dad and I sat in the living room, our astounded eyes glued to the TV – we hardly ever heard about a celebrity with our condition. Watching this story flood through the media made me feel empowered, knowing that someone so famous and successful goes through the same difficulties as I do. The abrupt spread of her story inspired me. For so long, I tried to hide my pain, but I know now I should be informing others rather than keeping them in the dark, so I thought I’d finally share my experience.
I’ll paint a quick picture of my elementary school days: sitting on the sidelines while other kids ran around beaming with laughter, being asked why I wasn’t playing with everyone else, refusing to wear shorts or any clothing that exposed my bruises, proceeding to be questioned why I wasn’t wearing shorts in the 90 degrees heat, and of course, hanging out with the nurse.
By middle school, I’d gotten (slightly) more comfortable in my skin, coming to terms with what I could and could not participate in. Still, gym class was triggering since 1. I still refused to wear shorts that showed off my battered legs despite the uniform rules, and 2. I couldn’t take part in most sports or exercises. Of course, this raised more interrogations from my peers. I would continually shake the questions off, answering briefly if at all and then changing the subject; I hated acknowledging how different I was from everyone else.
However, middle school was also when I discovered my passions, like reading, writing, painting, and drawing. Because I couldn’t engage in many of the typical activities my friends did (even riding a bike around the neighborhood), I spent much of my time inside, either in front of a canvas or with my nose in a paperback. I fell in love with books because they took me away to another world, and I fell in love with writing because I wanted to do that for someone else, too.
High school was somewhat easier with gym classes no longer a requirement, yet my syndrome still deeply affected my everyday life. I could get bruised or cut simply by bumping my knee on a desk or someone accidentally stepping on the back of my heel in the crowded hallway. Furthermore, since everyone was getting their driver’s licenses and more freedom from their parents, all of my friends were hanging out more and going on adventures. I always passed down invitations to the beach, a hike, even a pool party; I couldn’t risk getting hurt, and I didn’t want to wear a bathing suit that would unveil all of my imperfections.
Then, college came around. In my first two years, I was lucky – I suffered from nothing more than my usual, minor injuries. More recently, though, I experienced something for the first time: dislocating my knee. All I had done was move to sit down on the couch, accidentally twisting my knee just enough to throw it out of place. I was stuck, not being able to move without screaming in pain for what felt like hours, but was more like five or ten minutes before it popped back in place. Dislocations are common complications for many victims of Ehlers-Danlos; different people experience them anywhere from daily to every ten years or so. I was thankful I’d gotten so far in life without it yet and that I was at home with my dad who knew how to take care of me.
This experience wasn’t just something that hurt at the moment, though – it changed my perspective on how I had to live my life from then on. Suddenly, I was scared to work out, I was scared to take the stairs, I was scared to sit improperly, and I was scared to walk a whole five minutes to class. I came to the realization I couldn’t do whatever I liked: I had to modify my workouts, I had to take the elevator for only one floor, I had to sit more carefully in ways that wouldn’t risk another dislocation, and I had to wear supports on my knees to feel confident enough to walk around campus.
There’s a lot that comes with EDS that people may not understand because they don’t have to go through it, and it’s not just physical, but mental, too. Despite the anxiety I have over a future injury, always having to prepare for the worst no matter where I go or what I’m doing, I’ve been trying to look on the positive side. For instance, if this syndrome wasn’t a part of my life, maybe I wouldn’t have developed my true interests in writing and other forms of art so early on. Through these rough times, I’ve also gained so much appreciation for my support system. I’m constantly thankful for the loved ones in my life and all they do for me.
Lastly, I wanted to share a message to be kind to everyone you see. Too often I’ve observed people rolling their eyes at someone or even yelling at them solely because they took the elevator up one floor or they were walking “too slowly.” This infuriates me because you never know what someone is going through. There may be a reason they can’t take the stairs or have to walk at a slower pace – just because you can’t see their struggle doesn’t mean it is nonexistent. Your actions may affect someone more deeply than you think, so try to be understanding of others and spread as much kindness into the world as you can!