Two people on a date having coffee with a brick wall between them that is being taken down

Dating and Idiopathic Hypersomnia

With another Valentine's Day come and gone, the holiday reminds me about the struggles I’ve had with dating due to my idiopathic hypersomnia (IH).

A former partner didn't believe I had a sleep disorder

Before I was diagnosed, I was with my high school sweetheart from my senior year. We decided to try long-distance while I was away for college in Missouri.

During this relationship is when I went to get diagnosed. I thought that having another support system while getting a diagnosis would have made it easier, but it didn’t. My partner and his family didn’t believe I had narcolepsy at all.

I dismissed them because I knew in my heart that I had a sleep disorder. I ended up being diagnosed with a different sleep disorder: idiopathic hypersomnia.

It sucked being with someone and having them not be supportive in the way I was expecting. It was invalidating to be told by people I loved that I wasn't having problems — even though at school I was struggling to finish homework and to make it on time to class, among other things. Around the summer of 2020, we broke up, although the breakup was due to reasons unrelated to my idiopathic hypersomnia.

Navigating dating with idiopathic hypersomnia

After we broke up, I decided to give dating another try. My friends hyped me up and told me I should get back out there, since I hadn’t dated in 2 or 3 years. By then, I was less than half a year into being diagnosed, so now I had to navigate dating with idiopathic hypersomnia.

I fought with myself on whether to disclose my disability on my dating profiles. Should I make it funny and put that I have "Sleepy B*tch Disease" or be serious about my condition? Should I tell people about how I sleep more than 10 hours a day so I might miss their texts? I had to wrangle multiple thoughts about how I should go about my condition and dating.

I decided to leave information about my condition off of my profile just in case someone tried to take advantage of me. I had been assaulted in the past and didn't want to give any openings to anyone. I ended up setting a personal rule for myself to not say anything about my idiopathic hypersomnia until the 3rd date, or at least a few weeks into messaging.

Getting ableist and misinformed messages

Even with my personal rules, I ended up being snubbed by people I matched with. I got varying messages, from "What are you talking about? You're not disabled!" to "Oh! So you're my sleeping beauty" — which felt condescending to a sister condition of IH, Kleine-Levin syndrome, which is also known as "sleeping beauty syndrome."1

I was getting annoyed by the responses I was getting and having to explain myself over and over. At some point, I stopped saying I had idiopathic hypersomnia and told dates that I had narcolepsy. I thought that saying the more well-known sleep disorder would make dating easier, but it didn’t. I still got ableist messages and dates who didn't know anything about narcolepsy.

It hurt to be told that my condition was 'too much'

I was fed up and was close to taking a break again from dating when I started hitting it off with a new guy. I explained my condition to him, and he said that he understood and didn’t mind. We dated for a few months, with him coming to my birthday and other events. I took naps while he worked from home and waited for him to clock out so we could hang out. I thought we had a good thing going. We had confessed how much we loved each other.

Then, a week later, he broke up with me, one of the reasons being that I "slept too much" and "dealing with [my] narcolepsy" was "too much." It hurt to be told by someone I loved that something I couldn’t control was the reason they couldn’t be with me. He kept telling me that I wasn’t the reason we were breaking up, but it didn’t sound like that to me. Telling me that my condition was "too much" after saying months prior that it was OK felt like a slap in the face. I was depressed about the fact that something I couldn’t control had caused me to be broken up with.

Finding someone who loves me, IH included

Overall, dating over these last 4 years has been a mess. But I'm still hopeful I'll find someone who likes taking naps with me.

Then, even if my idiopathic hypersomnia affects me, I know that for them, it's just one aspect of me they've come to love.

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