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The Reality of Dating With Ehlers-Danlos Syndrome

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I was diagnosed with hEDS at the age of 17. It was a very long and heartbreaking process, finally getting a diagnosis and learning what it meant for my life. At the time, I was in a semi-serious relationship with someone I had been with for almost a year, and he stood by my side through all the doctor appointments and surgeries. We eventually broke up, both becoming different people when we went to college. And I was back in the dating scene. After dating someone for three and a half years, returning to the dating scene was a bit of a challenge. And then you add all the health issues…


It is extremely hard planning a date when you don’t know if you will be able to get up that morning, or be confined to bed because five different joints have decided to dislocate at once. I went on a first date with a guy and my hands turned blue for a good 40 minutes because that is when my Raynaud’s decided to start acting up. I was never asked for a second date…

There are just times when I want to scream at people about how ignorant they are. Multiple people have used my health problems as an excuse to not date me. I can’t even tell you how many times I’ve heard, “Yeah I like you, but I just don’t think I can handle all the health issues.” And yes, that is their decision and I would not want to be with someone who isn’t able to handle it. I don’t get to wake up and say, “I don’t think I can handle these health issues” and then bury them. My health issues are always with me. And it saddens me that people can’t look past the health issues and see the person. I’m trying very hard to not let my health problems define me as a person, but when others define you by those conditions, you feel like you’ve lost.

Thinkstock photo via anyaberkut.

Originally published: July 11, 2017
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