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I have lived my whole life with Ehlers-Danlos syndrome (EDS), I don’t know what “normality” is. My whole life has revolved around my disability, my friendships, my relationship, and everyday life.
Growing up, I was always that odd one out because of my disability; I had to wear special shoes at school that mostly got me into trouble. I had to sit and watch everyone else do Physical Education: I never felt like I belonged.
Because I didn’t get my official diagnosis until I was 15, a lot of the time I was accused of lying about my condition because it wasn’t visible. Telling a 13-year old that they’re lying about something so big really did hurt me. Because of my disability, I developed depression not being able to go out with my friends and partners made this worse, which then lead to other things. During this time period, I was extremely quiet about my disability, nobody knew about it other than family and adults at school. I was very ashamed to admit I was disabled, why? I honestly don’t know. Having a disability is nothing to be ashamed of and that’s something I wish I was told as a child.
When I finally got my diagnosis at 15, I felt like a whole new world was opened for me. I finally found a community for myself, I finally found somewhere I belonged. Even with my official diagnosis, I was still accused of lying because, again, it wasn’t a visible disability.
As I progressed into my final year of secondary school, I became dependant on crutches. I hated it. No 16 year old wants to live their life on crutches, but I realized as I kept using them, it doesn’t matter what others or even what I thought of my crutches, they really helped me and they were something I needed in life. Plus they were bright purple, so that’s a win.
Moving onto now, I am 18 years old, I have Ehlers-Danlos syndrome and I am not ashamed to admit it. I still struggle very much to this day, with eating, walking, breathing, and all-around living, but every day I am a fighter.
I am an Ehlers-Danlos syndrome warrior.Tags: Coping, Diagnosis Journey, hEDS, hypermobile EDS, Self-Advocacy
Categorized in: Stories