My EDS challenge Day 23- My biggest accomplishment in Life with Ehlers Danlos

  • May 23, 2022, 11:38 a.m.
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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 23- My biggest accomplishment

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This one was a difficult one to write about. Some might call me humble, or that I am not good at taking compliments, or that I can’t or don’t really speak very highly of myself. If you asked my parents or family members what my biggest accomplishment was, they might say my college degree. If you asked my friends, they might say that I survived really hard times. But I don’t use my degree. And I don’t have a career. I had to think outside of the box to leave a “legacy”. I suppose I will be known as having fought and tried my hardest to figure out what was wrong with me.

So for my biggest accomplishment, it will be these fuckers. The medical files. The tears, the struggles, the never giving up. The fighting with doctors even when I was exhausted. The speaking out about the horrendous bullshit I went through to get where I am today in hopes that one less person has to go through what I went through. Not only could I not stop at just accepting any doctor who would help me, I had to travel to several states to see the top doctors in the country for certain things. Go big or go home they say.

So here’s to solving the family secret. To vindicating my maternal grandmother from beyond the grave. She spent her teen years in and out of the hospital never knowing what was wrong with her and eventually having part of her intestines removed. My mother suffered in silence. May all mothers be aware of this condition in the future so they can educate the young zebras. So none of them have to suffer in silence, thinking they are crazy for experiencing the world so much differently than most. Both physically and emotionally.


hawkmoon269 May 23, 2022

Your powering thru and advocating is so admirable. You even saved a life (potentially) with your awareness and education. You're a rockstar darlin

AnOrangeZebra hawkmoon269 ⋅ May 23, 2022

Aw shucks <3

Mamie May 23, 2022

<3

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