Having Ehlers-Danlos Syndrome With Family in Town for the Holidays


The holidays are something most people look forward to, but as an Ehlers-Danlos syndrome patient I have a love-hate relationship with the holidays. Most years were spent at a relative’s house, with me only having to provide one dish and spending the rest of my day sitting around masking my pain. That was until this year when I had to host Thanksgiving dinner.

Holidays can be difficult with family who doesn’t understand your illness. It can mean having to take the hits when they poke fun at you for “not doing enough” or “sleeping to long” or when they say, “You must not be ambitious enough since you don’t have a job.” The holidays can mean giving up your bed to be a good host, knowing good and well that any other bed will result in your ribs dislocating and your nerves lighting on fire.

Having EDS with family in town can mean showering at 2:53 in the morning, partially because you can’t sleep but also because you don’t want to hear the remarks about how long you take in the shower or “you used all the hot water.”

Ehlers-Danlos is exhausting all on its own but having to explain yourself, host a dinner, and keep your body and mind from falling apart really can take its toll during the stress of the holiday season.

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Lead photo by Thinkstock Images


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