What I've Lost (and Gained) Because of Ehlers-Danlos Syndrome


I can’t do what I could do before and it totally sucks. There are so many things I have lost due to Ehlers-Danlos syndrome and I feel like one of them is my self.

I used to do Sun Salutations with ease. I used to walk every day for exercise and enjoyment. I used to have energy past 7 p.m. I used to wake up early and not feel much older than I am.

There are lots of things, little things and big things. But for some reason the one that bugs me the most is that I used to be a hugger. I loved giving hugs. I loved receiving them! And now when someone hugs me too tightly it hurts. A lot.

I feel like I’m not myself anymore. I was active, outgoing and friendly. But if I really think about it, I’m still myself, just a different version. I turned 33 this year, so let’s say I’m version 3.0. Version 3.0 is much less active and much more reserved. But I am still me in many ways. I’m still friendly and outgoing, just not all the time. I still go out and do fun things – I just have to be mindful of what I choose to do with my spoons.

I have also gained things. I’ve gained empathy and understanding of people with invisible disabilities. I have learned to prioritize and spend time doing things that I really want to do. I have learned a new craft in order to supplement my family’s income. I can now accept help from others when offered without attaching guilt when I can’t reciprocate.

While I lost some of the good things from my self, version 2.0, I made space for new things in my self, version 3.0.

I’m still me. And I still give great, and very gentle, hugs.

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