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My Search for Acceptance as a College Student With Ehlers-Danlos Syndrome

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I have Ehlers-Danlos syndrome. My parents thought it would be good for me to live on campus my freshman year, to gain that college experience. And for the most part, I agreed with them. My biggest concern was either finding a roommate who would understand my situation, or not having a roommate at all. My problem was that my university was very persistent about me needing to have a roommate. I wasn’t in a wheelchair, so they thought I must be able to live with someone just fine. They were wrong.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I don’t blame my roommate for the problems that arose. I wouldn’t necessarily wish living with someone with my condition on those who aren’t loved ones and voluntarily choose to do so. But there are days when I need 12 hours of sleep. I was never given that. There were days when I couldn’t stand loud noises, but she had to dry her hair. And there were days when all lights bothered me, but she needed lights on to see and do homework. You can’t always get needs met when you live in a 15 by 20 foot room with another person. We lasted one semester until it was proven that having my own room was best for my health.

Even putting the roommate situation aside, campus living was hard. There were days I could barely walk 10 feet, but needed to walk half a mile to get to class or to even get food. So many “friends” would call me lazy for driving from my dorm to the academic buildings. They just didn’t understand why. The few friends I made at freshman orientation started to dwindle because I never wanted to go out.

“Going out” consisted of going to the apartments to drink and party until 4 o’clock in the morning. Even if I wanted to go and not drink, I couldn’t; the smell of alcohol makes me nauseous. And the more opportunities I missed out on, the less people continued to try to include me. I was at a point where if I wanted to get lunch with my group of friends, I had to invite myself along.

There are some upsides, though. I found one friend who completely understood. She was happily content to just sit and watch TV with me on a Friday night. She loved that I went to bed at 8 p.m. because it gave her an excuse to also. It took me a long time to find her. She was the first person who entered my life post-diagnosis I finally felt accepted by. She gave me hope that people will understand and still love you for who you are, even if they have only known you a short time.


Originally published: February 13, 2017
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