I drew this piece in 2019 for Ehlers Danlos Syndromes’ Awareness Month. The Ehlers Danlos Syndromes are a group of genetic connective tissue disorders. They essentially mean that all of the connective tissue within the body is faulty. There are thirteen different types, the one I have is Hypermobility EDS. I dislocate and subluxate (partially dislocate) joints all day every day, and the first time I knowingly dislocated a joint was at the age of five. But despite this, and despite the other multitude of symptoms that began presenting when I was around the age of eleven (including kyphoscoliosis, high blood pressure, snapping hip, chronic fatigue etc) I was misdiagnosed and made to believe that my pain wasn’t being caused by a physical problem.
And so, I was put into an intensive hospital programme at the age of thirteen/fourteen, the aim of which was to teach me to ignore and battle through the pain. I’m sure you can imagine how detrimental this was to my mental health, especially as my physical health worsened.
Several years later, I got my official diagnosis of hEDS, which was an incredible day for myself and my family. The consultant and the genetic counsellor explained EVERYTHING that my body goes through, and put me in touch with a wonderful charity (Ehlers-Danlos Support UK.) When we got home that day, I immediately looked on their site, and saw the above quote (“my joints go out more than I do”) on a hoodie, which was the most relatable thing I’d ever seen, haha!
The Ehlers Danlos Syndromes are incredibly complex conditions that affect all of the body’s systems, and so can cause a plethora of related conditions and health problems. It’s a mostly invisible illness, and for me the most difficult part of living with this condition has been not being believed. The only way to prevent this from happening to others is by raising awareness.
Thank you for reading!