Posted July 11, 2018

by Skylar H.

Being in high school, I am naturally stereotyped as being overdramatic. No high schooler wants to do their work or show up to school. Teachers have heard all the excuses from students- from having the flu to crazy stories about how a plane crashed into their house. Of course, teachers don’t believe any of these unless they have solid, visible proof. Why would my excuse be any different?

I have Ehlers-Danlos syndrome. It affects my daily life and sometimes I can’t do the things everyone else does, like run the required two miles in gym class. My PE teacher was quick to state that my excuse had little effect on her and I would fail the class if I didn’t run. So, being the good freshman I was, I ran. I ended up with two dislocated hips, unbearable pain, and a whole lot of embarrassment.

Sometimes I wish I had purple and pink stripes all over my skin, or a note taped to my back that says “Hi, I’m chronically ill, please exclude me from (insert list)” signed, with love, by my doctor.

Awareness is so important to me because high school was something I looked forward to. I wanted to have fun. But I was met with harsh criticism and disregard of my condition. I had to fight for accommodations and explain to teachers why I wasn’t just another student who didn’t want to do work. Unfortunately, this is the life of every person with EDS. Our condition is invisible. I work continuously to make sure that no student, or anyone with EDS,ever goes through the embarrassment and pain I went through. This is why awareness is so important to me.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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