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To Those Who Will Never See My Worst Days With Ehlers-Danlos Syndrome

key information

source: The Mighty

year: 2016

authors: April Bauguess


Almost none of you will ever see me on my worst days. My most vulnerable hours are saved only for my hero husband, and even he will never really understand. When I’m in a flare, I wouldn’t think about leaving my house… or my bed or couch. I can’t handle any movement: no walking, let alone standing, on those incredibly painful days. Fortunately, I own a wheelchair now, so my husband doesn’t need to carry me anymore. During these times, there is no relief, not even through resting and being completely still. I wait impatiently through the misery using every technique I’ve been taught in pain management. However, when the pain reaches a certain point, nothing helps anymore.

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