My EDS Challenge Day 9- Inclusion in Hypermobile Life

Revised: 05/12/2021 1:58 a.m.

  • May 9, 2021, 5 p.m.
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  • Public

I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.

Day 9 of the challenge: Inclusion

I was trying to think of what to write here but what keeps coming to mind are my negative thoughts from going from living a normal life to becoming disabled. I suppose you want to call it “internalized abelism”… or a host of other things. “im not good enough because im not normal” or “no one would even wanna bother or deal with me because im not normal” etc.

When lockdowns started, and folks started complaining about being stuck inside and everything going digital… I think it was the first time in my life i actually felt included. I didnt have to repeat the same things over and over about why I couldnt or didnt want to show up to this or that gathering because i wasnt expected to go. I didnt have to feel like not being able to drive somewhere was a loss. And now when the world goes “back to normal” people like us will (hopefully) feel more included and less isolated, because the option to be remote will still be there. There are more drs and PT’s and even therapists who dont look at you like you have a second head when you say you have EDS. Saying “we have a long way to go” seems cliche, but I am feeling like I am in more of an inclusive space now than lets say 20 years ago. My mom suffered in silence with her EDS because no doctors back then ever would know to use that kind of vocabulary. Now we can better describe this genetic condition which still needs so much research done at the molecular level.

Last updated May 12, 2021

music & dogs & wine May 12, 2021

I was just telling my in laws that I loved pandemic cause I hate going places and I hate crowds, and now it's not crowded at all and it's ok not to go to things. They looked at me like I was insane, lol.

AnOrangeZebra music & dogs & wine ⋅ May 13, 2021

ugh lol

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