None of my friends understand the toll that my EDS takes on me

Posted April 30, 2020

headshot chloe story

According to my doctors, I have had hypermobile Ehlers-Danlos syndrome (hEDS) since I was a baby, but I was not diagnosed with it until I was 13.  Before this I pretty much lived a normal childhood, hanging out with friends both in and out of school, shopping, cinema, and much more. I was, however, very clumsy and I found that I was falling over a lot, and frequently dislocating and fracturing different parts of my body. Now I am 20 and I have already had four knee surgeries (two on each knee).

My life spiraled from being this normal energetic child to a child that was back and forth to the hospital for appointments and then having a number of surgeries. I lost a lot of my closest friends because of my condition as they always thought I was making things up, like how many operations I’ve had, the pain I’m in, and the lack of energy I have. More importantly, I lost friends due to the fact they never understood what it was like to have this condition and the impact it had on me and my everyday life.

This then led me to become isolated during the rest of my school years, and also led to a lot of bullying and name-calling. I think it is safe to say that I started to hate my life and I wished that I could have some kind of normality back and my friends back, but at the same time I knew that would never happen, I had no choice but to figure out a way to learn how to deal with that.

 That proved easier said than done as I still have not regained any of my confidence back and as I have got older I have now realized how much of an effect it has had on my mental health. I have got to a stage in my life where I am sleeping the days away, I never go out to socialize, I hardly communicate with my family. I feel like I have let them down so I don’t want to give them any reason to feel disappointed in me. 

I guess the moral of my story is that it’s not okay to feel like you don’t belong in this world just because you are different from the others out there. Being different is what makes you unique. You just have to find it in your heart to believe that there’s light at the end of the tunnel and things will get easier, take each day as it comes and remember that every cloud has a silver lining. That silver lining is YOU so just be the best you that you can be!

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