The Mighty Logo

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

The most helpful emails in health
Browse our free newsletters

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.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

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.

Thinkstock Image By: ARTQU

Originally published: August 16, 2017
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home