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My Double Life as a Person With Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: Fawn LeMay

summary/abstract:

Many who know me are aware of Ehlers-Danlos syndrome. They know it seems like it causes dislocations and bruises even if I just look at something the wrong way. But often times they don’t realize the face I put on is hiding behind tears and disappointment. I work full time and put on my brave face and act as if nothing is wrong. But when I go home, I deal with the pain from that day at work and also make sure I have everything in order regarding my health.

What many of them don’t realize is I work two full-time jobs. The one where I make a living and the one that keeps my health (the best I can) in check. I spend my two days off a week either at medical appointments or calling doctors to make sure I get referrals, medications and test results.

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