#talkingback

A kids and teens perspective on chronic life


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Life with chronic pain and illness is certainly full of ups and downs. If you have a story, experience or insight that you want to share, become a TCAPP guest blogger.  By giving voice to the many issues we navigate each day, you can help to raise awareness and promote better understanding. Review the TCAPP Blog and Content Guidelines and submit your guest blog today!


Elevator Girl

By Michaela Sullivan

As a teenager, all I want is to be normal. As a teenager living with Ehlers Danlos Syndrome and Scoliosis, my life is anything but normal. Have you ever heard the saying “Why fit in because you were born to stand out”? Unfortunately, it’s true. While I’d like nothing more than to fit in and feel like a normal kid, I am starting to think that maybe I was just destined to be a little bit different. 

In school, for example, I’m barely even there because I can’t sit too long without falling apart. Literally! That alone sparks questions and more light on me than I’d like. But when I’m finally stable, strong and ready to go back, I have to use special chairs to help give the best support possible and minimize my pain. These special chairs are nothing more than the teacher’s chairs, but to the students who are stuck in the small plastic sad excuses for seats, they become envious. So not only am I the girl who’s only there half the year, but I’m also the girl who sits in the special chair. Great! Lucky me!

Another unusual perk I get at school is using the elevator. Now, because my pride is so big, I’ve tried to use the stairs before. But in a high school with 1500 students and 7 minutes between each class, passing time is hectic to say the least. The hallways are narrow and it is like a stampede cattle call. The only time I tried to use the stairs, I was bumped into a wall and sublexed a rib. End of my stairway career. So I take the elevator. I must say that this is probably the worst part of my day. I shouldn’t feel embarrassed, but for some reason I do. I look completely normal from the outside, so naturally, people think I’m fine. I’ve been approached many times asking why I don’t use the stairs, and it’s made me paranoid. When the cute senior boys watch me step into the elevator, my face goes red. Do they think I’m just lazy? Or too out of shape to climb 3 flights of stairs? Or a bad person faking a disability? Now, in reality, they’re most likely thinking about lunch, girls, or the homework that they didn’t do. But in my mind, it feels like everybody is watching my every move, and it’s daunting. 

Is it really fair to those of us who would much rather go unnoticed to have to be under the spotlight suddenly? Am I just being paranoid? All I really know is that I’m going to try to get through the rest of high school with my head down, and hope everybody else is too worried about themselves to worry about me.