To My Teachers, From Your Student With Ehlers-Danlos Syndrome
I have a condition called Ehlers-Danlos syndrome. EDS is a chronic disorder that causes my joints to easily dislocate. Symptoms for me are everything from pain to fatigue, stomach issues, dislocations, and skin problems, anxiety and depression, even dizziness and passing out.
I know you have 200 students you deal with all the time, and I know I’m not the only one with problems. You’ve got students with other conditions or students who come from disadvantaged homes. I’m not saying you should pay more attention to me than to them because you shouldn’t. It’s not a competition to see who’s got the most to deal with. But I’m guessing you don’t know what EDS is. You don’t know what my life is like outside of your classroom.
My teachers are my biggest role models. You are who I strive every day to be. When I’m in your class, I’m there to learn. When I’m in your class, you know more than I do about the subject. I don’t go up to you and say, “Are you sure 5+5 is 10?” or “You know, I think we were playing field hockey wrong today.” So why do you think it’s OK to tell me I’ll be fine tomorrow or should just push through the pain?
I know more about my pain than you do. If you were in as much pain as I am every day, you would not be standing up. It hurts. You know that pain scale they ask you about at the ER? Your 10 is probably my four. There are mornings where it takes me five minutes to put on my jeans, and often those are the easy days. I come to school every day, and I come to your class and do my very best.
Whether you’re teaching my science class or my gym class (two things I don’t like and am not good at), I want to be there. I want to be there and learn and participate just like all of my classmates. I want to get through a whole class period without having to get up and leave because I can’t get my shoulder to stay in its place. Five years ago I would be the first person to admit that I’d do anything to get out of gym class. But now, I would give anything to play volleyball like the other kids and be with my friends.
When I show up in your class and I tell you I can’t do something, I mean it. When I tell you I dislocated my hip last night so I can’t do certain things today, it’s not because I don’t want to try. It’s because I don’t want you to have to deal with a girl writhing around on your classroom floor slamming her foot into a wall trying to get her hip to stay in its socket. When I say, “I dislocated my shoulder, may I please go in the hallway and fix it?” and you don’t see me screaming in pain, it’s because it happens all the time. I’m not faking it.
Name a type of doctor, any type. I have one. Cardiologist? Yeah. Neurologist? Psychologist? An ENT, a metabolic doctor, a gastroenterologist. I could keep going, but my point is that I’m a high schooler. I shouldn’t even have to know what a gastroenterologist does.
I deal with this in my social life, and my disorder changes everything I do, but I absolutely refuse to let EDS inhibit my education. I’ve learned to accept that I’m different and figured out what works for me in classrooms. Being different and needing accommodations doesn’t make me less capable. Although my disorder will always be a part of me, it doesn’t define who I am. You are an educator, and I know I’m not the first you’ve met or the last person you’ll meet who has EDS. So please get informed and know the signs. Invisible illnesses like EDS are just as important as any other disorder.
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Thinkstock photo by demaerre