The Reality of Dating With Ehlers-Danlos Syndrome

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.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via anyaberkut.

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

woman swimming in the ocean

Why I Changed My Attitude About Illness From 'Why Me?' to 'Why Not Me?'

Ever had that kind of week where everything that could go wrong did? Not only did I sprain my ankle for the third time this summer, but things at work got “interesting” and I had some personal drama. Hit after hit just kept coming. I kept wondering, why, on top of dealing with my chronic [...]
Doctor In Consultation With Depressed Female Patient

When Doctors Say My Pain Is Impossible, It Is, in Fact, Possible

I had my first outpatient surgical procedure when I was still in high school and needed a plantar wart removed from the sole of my foot. As the doctor injected the area with a local anesthetic, he explained he did these procedures all the time, and I wouldn’t feel a thing. After a short wait, [...]
A woman's head created artistically with a scribble look.

Why I Write About Ehlers-Danlos Syndrome

I am a writer and a published poet. Writing is very therapeutic. I write poetry based on my experiences with Ehlers-Danlos syndrome. On the days that I don’t write I feel slightly off. It is a fantastic and cheap form of therapy. I write articles about my battle with chronic illness for this exact same [...]
woman pressing buttons in an elevator

To the Nurse Practitioner Who Scoffed at Me for Using the Elevator

To the nurse practitioner who proceeded to belittle me for using the elevator, Ehlers-Danlos syndrome (EDS) is known for notorious pain. It is a connective tissue disorder that is caused by a defect in collagen. Collagen is the “glue” that holds the human body together. Collagen is an important contributor to the physical strength of skin, joints, [...]