It’s Ehlers Danlos Syndrome (EDS) Awareness Month. I haven’t written about EDS. I haven’t really thought about it that much. I haven’t been as aware as I should have been.
Perhaps it’s because I feel like a bit of a fraud talking about it. I don’t feel like it’s about me. I’m ok. I’m not a “proper” Ehlers Danlos Syndrome person.
I was diagnosed with EDS last year. It was a throw-away diagnosis. I’m hypermobile.
So hypermobile that I ended up in a wheelchair last year. I couldn’t walk. My hips gave up on me. It was a winter of pain and isolation.
So hypermobile that my osteopath who I visit only when the pain is unbearable, said that the only other client she’d ever seen with a back like mine, had been in a severe car accident. She wondered if I could have broken my spine at some point and not noticed, and maybe that would explain its looseness.
My consultant said that he didn’t really believe in Hypermobility as a syndrome. He said that officially I have EDS Hypermobility type, but that that’s not really important.
I liked him, but found it hard to reconcile having it or not having it.
I’d actually only finally pushed for a diagnosis, not because of the wheelchair, not because of the hips, but because I’m a writer and writing with a pen hurt.
I love to write. I love to draw. I love to sit and make origami flowers. And all these things hurt me.
I asked him for advice. He told me to stop writing with a pen.
It may seem callous, but that was the answer. This is who I am. This is where I’m at. The pain is not going to go away or lessen. If something hurts, I can do it, or not do it. Those are my choices.
This is not my expert topic. I know so little. His advice to stretch and build muscle has helped. My walking is better. I’m stronger.
He told me I shouldn’t run, I should swim. There was useful, practical advice. But I know there’s more.
I’ve read the symptom lists of my type of EDS, and I have them. I’m not just the pain in my joints, I’m the other bits too.
At least I get velvety soft skin out of it. It’s a shame it’s always covered in bruises.
I decided to test the bruising thing once. Just to see if I was clumsy or actually bruise easily. I poked myself in the leg with a pencil in a pattern. Not hard enough to hurt. Then got distracted by something shiny, the way I do.
A couple of days later someone asked if I had some kind of exotic disease. There was the pattern of spots in bruise-form.
This post isn’t about making you more aware, it’s about me and my lack of awareness about what I am and what that will mean for the future.
I still remember saying to my first boyfriend, “You know how something always hurts?” And him shaking his head.
I have always been in pain. Pain is normal. Pain is background noise.
I’m still finding out what it means to understand that there is a reason behind the pain.
I’ve put much more effort into understanding who I am, than into dealing with the physicality of me.
So for Ehlers Danlos Syndrome Awareness Month, I am saying that I am here. And I think I am finally ready to listen.