Finding What Works For You: My Journey with EDS

I have a disease, or a syndrome, or…I don’t really know what to call it. “I’ve got this thing called Ehlers Danlos Syndrome,” is what I usually mumble to people when they ask what’s wrong with me. Otherwise it tends to go unmentioned. Partly because I don’t want to be seen to be whining, and partly because when I do mention it people dismiss it as something that isn’t that serious because, I suppose, they don’t understand it. I barely understand it myself after years of living it, so how am I meant to explain it to anyone else?

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