MY EDS Challenge Day 6- What you see & What you don't see in Life with Ehlers Danlos

  • May 6, 2022, 12:37 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.

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Day 6- What you see & What you don’t see

You see a young woman who looks thin and healthy. You might think she’s attractive. She has goals, plans, and ambitions and she’s probably in the prime of her life. She probably has a lot of friends, and she’s super lucky to have her health. You hear her talking about her hobbies so you assume she’s “feeling better” after her surgery and on the road to being back to normal, whatever that means. You compliment her on how good she’s looking. She looks better. You sometimes see accommodations she makes for herself, and you think ” good for her she’s not letting her disability hold her back”. Its inspirational but its not reality. The reality is that she has real restrictions. Hopefully you see her trying to advocate for people who have been exposed to years of stereotypes and who are looking for answers. You see the positive side of her EDS journey, and you might be proud of her.

You don’t see the compression garments, the cushions, the rollers, the medications and supplements she takes every day just to function. You don’t see the exercise tools and pain distraction tools that are very expensive and its taken 3 recommendations just to figure out it doesn’t really help anyway. You don’t see her jumping through so many little hoops just to get basic things done, or the years and years it took for her to finally solve a family mystery. You don’t see the anxiety for hours before she has to go out in public, wondering which symptoms will rear their ugly head or make her too tired to be around humans anymore so she has to leave. You don’t see how difficult it is for her to sit in a car on some days. You don’t see the thousands upon thousands of dollars she’s had to pay out of pocket even WITH insurance for meds, physical therapy, doctors and testing. You don’t see the hours upon hours of researching she had to do on her own just to figure out what was wrong. You can’t see the pain, the sleepless nights, but sometimes you see the tears. You can’t see the grieving of the loss of the life she thought she would once have to find her new normal. The loss of old hopes and dreams, to have to make new ones. You don’t see the anger, heartbreak and disgust she has towards the medical establishment for making her feel crazy for years. The medical trauma of the numerous procedures and testing that needed to be undergone. She privately cries and tries to deal with medical flashbacks, the loss of numerous friendships and relationships due to her mental state. You don’t see the imposter syndrome she has, because on many days she even questions if this all is really happening. She was inconsolable for so many years. You can’t see everything she has had to surrender for this new life.

Last updated May 06, 2022

hawkmoon269 May 06, 2022

Aww sweet girl. +hugs+

AnOrangeZebra hawkmoon269 ⋅ May 06, 2022

<3 <3

Mamie May 06, 2022


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