Posted July 2, 2018

by Molly M.

I was diagnosed in 8th grade with EDS. My little brother had grabbed my hand and my thumb dislocated. Things like this kept happening and I would get sent to physical therapy and nothing would work. Finally, my occupational therapist told my mom that a new geneticist moved into the hospital who studies EDS and he recommended I see him.

When I got my diagnosis all the pieces started falling into place. I was able to explain why I was so flexible and could easily pop my joints in and out of place. Following my diagnosis, I was diagnosed with POTS. And not long after were my other 3 siblings all diagnosed with EDS and POTS.

I have been casted, immobilized, and splinted time and time again, and doctors don’t always understand what my condition is because they are often afraid of it. I am lucky to have parents who help me advocate for myself and teach me how to voice my needs. It’s never going to be easy to get the treatment that I need, but that’s the price that I will pay for being a zebra.

While I have lost some of the things I loved the most due to EDS including Irish Dance, I have gained so much more. I can express myself through new artistic ways, I have found other passions, I have cool party tricks, I have been able to focus more on my relationships with others, I have met amazing people through this…etc. I am so grateful to be shown undying support from friends and family. It’s never easy to have to sit out of what you love to do, but it makes it easier when your friends give you more than the support that you need.

I am the most stubborn and overly independent person you will ever come across. I hate sticking out and therefore it makes it difficult to get me to listen to my doctors, but I have learned not to be ashamed. I should not be ashamed to ask for help. I have accepted the fact that I don’t always need to apologize or be ashamed of something that I have no control over. My body is just a bunch of rubber bands that keep getting overstretched and sometimes they snap. With the right treatment though, they can get tied back together.

This was the card I was dealt. Sure, it might not be the easiest card, but it’s doable. I can survive this. And I will survive this.

If I focus on overcoming my illness I know that all I will ever do is fixated on all the things that could go wrong. So, I choose to make it a part of me. EDS has taught me that everyone does not need to know that I am sick, for it to be real. How my body works is uncontrollable but it is easiest for me to live my life normally until I need to win the next challenge. And that’s the thing about challenges when having EDS, it’s not like a race where you win immediately. This is a journey where I am constantly being chased by the next runner, and I have to learn to be faster, smarter and stronger. This all comes with knowing my body and my own limitations. Sometimes the next runner beats me, sometimes they run me over completely. I might not always win gold, but I can always find a solution in the course of time. You can’t put a clock on a recovery with EDS, but you can put a clock on how long you will allow yourself to worry. I live by the idea that a life full of worries is a life half lived. I can’t say that I don’t worry- because I do… but I don’t let my worries consume me. Just like I don’t let EDS consume 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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