I’m the girl who’s always broken

Posted June 5, 2019

By Zoey B.

I’m the girl who’s always broken.

For real.

Some kids actually don’t know my name. I’m just referred to as the girl who’s always broken. I mean, for them it probably seems like it.

My whole life I was always very flexible, doing weird things with my body other kids couldn’t do. Although this came in very handy as a baton twirler, it wasn’t thought to be abnormal or in any way harmful to me—until I entered the eighth grade. On my first day of band camp, as I was finally old enough to be a majorette for our high school marching band, I was rehearsing and felt a large movement in my knee, I fell to the ground, unable to get up. After seeing the orthopedist we discovered my knee had dislocated.

Months of physical therapy and I was finally back on my feet, returning to sports. My first baton practice back without my brace I did I high kick, resulting in a knee cap dislocation so loud everyone heard it. From there my doctor said I needed surgery, I couldn’t walk without dislocating it. After that surgery I had three more, having my leg broken twice to try and fix the tracking. Four surgeries and nothing could fix me.

My sophomore year of high school I was bedridden for two weeks, unable to do anything without pain in my shoulders and neck. I couldn’t take it anymore. On top of that I was diagnosed with dysautonomia, I was falling apart at the seems. None of the treatments seemed to work, I just couldn’t get better.

One day I was looking online and saw something about EDS. As I never heard about it before, I started looking to see what it was. I remember after reading, thinking, here is my answer, this is what I’ve been looking for! After talking to my orthopedist I was quickly sent to genetics where I was confirmed with hypermobile EDS. Finally my answer has been found. My weirdness finally has a name.

I’m not just the girl who’s always broken. My name is Zoey, and I am an EDS warrior.


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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