Posted July 16, 2018

by Sarah M.

I was diagnosed with vascular EDS when I was in my 30’s by the Mayo Clinic. My whole life (up to the point of being diagnosed ) was beyond challenging. My life consisted of braces, casts, surgeries, and extreme pain with no one being able to explain to me as to why. Doctors and family members started treating me as if I was “mentally unstable”. It took me being flown to the Mayo Clinic (via a medical flight) to get the answers that had eluded me for so long and validation that I wasn’t “mentally unstable”. I was relieved to finally have answers but I still face challenges.

I live in the rural Midwest. When I have to utilize a hospital or see a medical specialist I have to constantly explain what EDS is and educate the medical staff on how to treat me. I still get treated as if nothing is really wrong with me or pushed to the side because medical personnel doesn’t understand or know how to treat me and my disorder. Family members still refuse to acknowledge my disabilities due to lack of education on what it is that I suffer from. It’s really hard to try and live with this disease and try to educate and “stand my ground” with the general public. I constantly hear “you don’t look sick”, “you just need to exercise”, “it’s all in your head”, etc. I try not to let these comments affect me and my outlook on life.

I know with having vascular, my lifespan is definitely going to be shortened. So I refuse to live what time I have on this earth depressed and bothered by others lack of education concerning my disease. I know God is with me even when no one is. I also know I have the inner strength to stand my ground even if that means I might be the only one standing. My braces and different ways of doing normal daily tasks are my “normal”. So, it’s ok to be different and awkward!

So I fight on like the EDS Warrior that I am. And I will continue to fight and push on until I’m called home! So my advice to others out there fighting: Fight like you’re the third monkey trying to get onto Noah’s Ark!


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