Posted July 24, 2018

by Jordyn S.

I have been rather flexible since I was a child. I was always full of energy and playing sports. I played tackle football when I was 8 and since then played almost any sport you could think of. When I was 12 I started dislocating my knees in the middle of basketball games or just walking down the hallway. Every time I tried to use crutches my shoulders or wrist would dislocate.

I was told for three years that it was all in my head. My joints would slide right back after dislocations making it hard for people to understand. I soon became the girl who cried wolf, nobody would help me, and I was consistently called a liar. After my knees deteriorated, I joined the swim team. My joints would be fine in the water but I started getting more and more exhausted and feeling pain all over my body when I went home. I had to quit sports altogether during my sophomore year of high school.

This was devastating. I went to an orthopedic surgeon who performed his last surgery on my knee before retiring. After going through 6 months of physical therapy I started riding my bike and swimming that summer. Last week of summer the knee I had surgery on dislocated and I was rushed to the hospital. All of my ligaments and tendons broke including cartilage and a piece of bone. I had the surgery re-done. After another 6 months of physical therapy, I was told I would never ride a bike again.

I had a part-time job at a local gas station when I was 18, but it was too hard on my body. I asked for them to help me out by giving me a better floor pad to stand on or a chair to sit down if I couldn’t stand. They refused that request and fired me instead.

When trying to get a job that would help me with my disability, I had to take a physical test where they pushed me to my limit on everything to see what work I could or couldn’t do. The physical therapist who gave me the test sat me down after and told me I showed all the signs of Ehlers Danlos syndrome.

Now at the age of 20, I can’t even carry my backpack to my classes. My fiance’ does that for me. I do my best to overcome obstacles in my life. I’ve been losing weight to try and make things as easy as possible on myself.

I recently hiked 2 miles up a mountain without support. This is just another mountain I have to face.

When everyone calls me a liar I have papers now to tell them I’m not.


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.

Do you have a story to tell? Share it with us!

Categorized in: