Diagnosis makes a difference

Posted December 20, 2018

by Claire C.

I’ve been “floppy” from birth. As a toddler, my joints dislocated often, but I reached all my developmental milestones with ease so no one had any concerns. When I got older the pain started and everyone always brushed it off as growing pains. When the pain didn’t go away, did they even try to figure out what was wrong? No.

They called me a hypochondriac and they called me lazy and they sent me on my way. The worst thing is that I believed them.

I thought my pain was a figment of my own imagination and became a miserable person. I buried myself in books and stories about people who I liked more than myself. I became very depressed and developed really bad social anxiety. I was only 12 years old and yet I felt completely and totally alone.

In high school gym class, I was always the weakest person, even though I was a normal weight and looked, if not athletic, at least healthy. We started a new program where we ran increasing lengths of time each day. Soon my right foot hurt worse than anything else I’ve ever experienced, yet they made me keep running. It got so bad I was limping, yet I was still forced to run. I’m sure that’s what caused the six-year-long runner’s knee I’ve been experiencing, something I don’t think will ever go away.

As soon as I could I stopped taking gym class and became a completely sedentary person. I coasted by like this for three years until it was time to go to college. My grandma offered to get me some shoes for my overpronated feet so that I could walk around campus. That pair of shoes opened the floodgate to discovering I had Ehlers-Danlos syndrome, dysautonomia, gluten intolerance, and who knows what else.

It’s hard to describe how I felt when I found out I had EDS. It was a strange mix of satisfaction and apprehension. My pain was real, it had a cause, and it can be explained. I don’t think anyone who hasn’t experienced this can truly ever understand.

My happiness about finding out I had EDS greatly confused my family. They didn’t understand that my pain was there regardless of the name. My normal day involved subluxing most of my joints. Without the diagnosis of EDS, I was considered just a lazy, attention seeking hypochondriac. Now I have a lot more confidence; I know that my EDS symptoms aren’t my fault and that I should listen to my body. I feel like an entirely new person.


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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