My EDS Challenge: Day 1 This is me in Hypermobile Life

Revised: 05/02/2021 3:16 p.m.

  • May 1, 2021, 6 a.m.
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  • Public

I am taking part in #MyEDSChallenge 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 1 of the challenge: This is me

I am a 32 year old girl (feels hella weird calling myself a woman) with Hypermobility spectrum disorder (HSD). I have two homes, one in the Chicago suburbs and one in Austin, TX. For those of you who ALREADY know me, I am obsessed with the color orange, the band Linkin Park and Mike Shinoda. I work part time remotely and I enjoy going on walks daily (when I can). I have been in physical therapy for years and enjoy working on my body and learning ways to work with it everyday to cope with the fact that my connective tissue isnt doing the job its supposed to. I also love books/reading, podcasts, and latchooking. I used to be far craftier than I am now but my chronic fatigue took over so I took up a new hobby of playing Animal Crossing. It’s the first game console I bought for myself but I really don’t consider myself a “gamer”.

I used to love fitness and excersise but I am limited in my capabilities now. I also cant sit for long periods of time and I can’t wear certain clothing or drive because of the pain. My life is about balancing things these days, and finding my new normal with a non disabled mindset was challenging. I am finding a balance between my life in two states, work and personal time, and what I can and cant do on certain days. I try not to let my disability define me but on some days its hard because my life does revolve around it and it has become a large part of who I am. I am very passionate about researching EDS and rare diseases in general need way more funding and attention. The standard for diagnosis of rare diseases needs to be revamped as well and I hope to contribute toward that goal in some way.

Last updated May 02, 2021

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