MY EDS Challenge Day 18- Nomination for people who have supported me in Hypermobile Life

  • May 18, 2022, 12:13 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 18- Nomination for people who have supported me.

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I had a really rough go of it especially in 2020. I had major surgery, I was in a transition period with my personal life/living arrangement. My parents moved with me as swiftly as possible logistically. Dad is always up for traveling to new places when I have to see doctors. My parents have always had my back even when doctors didn’t. They supported me when I wanted to keep trying to get testing done, even when it was uncertain, costly, and stressful. They trusted my research and knowledge and encouraged me to speak publicly to help other people in the same situation. Paying for travel and medical expenses not covered by insurance caused me to not be able to afford my own place so I had to move back home.

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I met my partner right after one of the most difficult things I have ever had to endure, unexpectedly. He had to learn a lot of medical terminology and anatomy really quickly to be able to understand what was going on with me. Someone with complex and sometimes unsolved medical ailments is not easy to deal with. He looked past all that and believes that this stuff was separate from who I was as a person. There were a lot of days and still some days I don’t believe that, that I think my conditions make me less than. But he keeps on telling me this is not the case. He has driven me to many PT appointments and even tried to learn as much as he can to help me. That is dedication. <3

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