Read on Twitter
Someone just praised me for not letting my disability “define” me and when I read that it honestly hurt me so much. Because my disability, Ehlers-Danlos Syndrome, defines almost every part of me.
A lot of the times EDS stops me in my tracks, or makes me take really exhausting roundabout detours. If you asked me to write a list of every aspect of my life that is affected by EDS I wouldn’t be able to get it all down on paper. Because it’s everything.
And yeah, that might be really sad and hard to hear, but it’s just the truth. That doesn’t mean my life is total shit or that I’m not happy, but it does mean that my disability definitely defines me. It is there behind every choice I make in life. And it’s okay to admit that.
Obviously I am “more than just my disability” but I don’t think that really needs saying? Of course I am a complex human being made up of lots of thoughts and feelings and quirks and New Girl quotes and ambitions. I wouldn’t know how to just be “EDS girl” and nothing else.
It’s really hard to articulate why this “compliment” isn’t actually a compliment to me. It feels mostly rooted in the idea that disability is a negative thing that we should try to distance ourselves from, and I’m over here working so hard on acceptance and self confidence.
And I think it feels like it invalidates or erases my daily struggle. You might think I’m so “strong” for not letting my disability “define” me but that just means you don’t have a private viewing window into how it comes into play every moment of my life.
It feels like I’m being praised for hiding my struggles and pretending things are okay because that’s just easier on everyone. But obviously this person doesn’t read my twitter account otherwise they never would have given me this “compliment” at all. 
