I am an Ehlers Danlos Warrior

Posted January 8, 2019

by Stephanie O.

My name is Stephanie, and I am an Ehlers Danlos Warrior.

When I was 7, I had my first fracture. From then on, my life has changed forever. I didn’t get diagnosed that year, but that marks where Ehlers Danlos made its first appearance. At 13 is when I finally got answers. How did my first break happen? As any 7-year-old thinks they can fly, so did I. I jumped down an entire flight of stairs thinking I would stick the landing! Nope, didn’t happen.

From a young age I was always very active and very athletic. Any type of ball game or test of strength, I was there. I played soccer from the age of 5-17 and then stopped because of my Ehlers Danlos. Through my entire childhood, it was non stop breaks, subluxations, dislocations, and sprains. Everyone and anyone who could bring me down about what was “stopping me” only made me stronger. It only forced me to want to tell my story louder!

I have had to give up so many things a “normal” person does. But, what is a normal person? I suppose that’s someone who can wake up and start their day as soon as their eyes open. But, let’s be real, is anyone normal?

I’ve struggled with pain, scrutinization, and missing out on so many important events. But that does not stop me. My purpose is to spread the word about my journey, my hospital visits, and what Ehlers Danlos is. I have educated so many people along the way so far! There is nothing more I love to do than spread the word about us zebras out there. I want to encourage people to not be scared, but to learn about what is scary.

On a day to day basis I think of how my life would be different if I was never sick, never knew what the inside of a lonely hospital room looks like, or to be someone that’s able to say they’ve never broken a bone. But as a zebra, as an Ehlers Danlos Warrior: I am only stronger and richer in so many other ways than others. The knowledge I’ve gained from being submerged into a world of doctors and pain. The journeys I’ve been on with surgeries, procedures, and losing people in my life.

I’ve lost so many friends along the way, but it’s mostly people who weren’t able to understand that my body can’t do what their body can do. The people who say, “just drink milk and make your bones stronger”, the people who don’t have any knowledge that something like Ehlers Danlos exists. The people who can’t handle me at my worst do not deserve me at my best. All I can do is educate people around and make them more aware!

Each day I become stronger and filled with more knowledge about myself, Ehlers Danlos, and the will power to fight through anything that comes my way. “How can you remain so positive?” many people ask. My answer is simply, “if I give up….that’s not even a possible thing that’s going to happen”.

I stay strong for me and others just like me. I understand what it’s like to be at a 7/10 on the pain scale on a daily basis. I know what it’s like to not be able to get out of bed in the morning because you’re just stuck. I know what it’s like to have doctors say, “there’s nothing more we can do for you.” But none of that stops me and none of it should stop you.

I’m here to fight and spread awareness about EDS and how it impacts our lives, family, and any bit of hope there is. I leave my hoofprint somewhere every day so people know I exist! I will not hide!

I am Stephanie, and I am an Ehlers Danlos 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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