Admitting I’m scared of my future with Ehlers Danlos Syndrome | oneedsvoice

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Admitting I’m scared of my future with Ehlers Danlos Syndrome


In the last couple of years as I’ve learned more about Ehlers-Danlos syndrome, I have considered myself lucky. I’m in my 30s and up until the past year I’d never experienced a dislocation. My chronic pain only became worse in the past few years. Not to say I didn’t have some aches and pains throughout my life, but it wasn’t daily constant pain until the last few years.

I’ve read in posts on The Mighty or in Ehlers-Danlos groups on Facebook where people just roll over in bed and dislocate a rib or a hip; I counted myself lucky that I didn’t have that problem… yet. That “yet” is always there. And that “yet” is getting closer. And if I’m honest, I admit that it scares me.