Changemaker Profile

Lara

My condition is Ehlers-Danlos syndrome. I had over a decade of questions, being told it was all in my head, I was a hypochondriac, and never being like my friends, always feeling different. My early years were much harder than my adult years. My teens were a kind of a miserable memory of just pain. I ended up beating myself up and woke up in an ambulance. I just remember I wanted everyone to see my pain and understand it.

In my role representing The Ehlers-Danlos Society and its community, I am representing all the 14 types of EDS and hypermobility spectrum disorders, and that is what I try to do every day, but I get abused on twitter often, trolled – “you’re not sick enough.” “you don’t represent me.” “you’re an ableist.” It’s horrible. So, you must become very strong and have a thick skin for that to not bother you. But it does. It really bothers me.

Being neglected is a very common thing in EDS, you wait years for a diagnosis. It would be so wonderful if I went up to someone and said I have EDS and they didn’t say “what’s that?” That would be one success, as would people being believed and diagnosed when our symptoms start.