How Having Narcolepsy Messes with My Love Life

How Having Narcolepsy Messes with My Love Life

On June 7, news broke that one of TV’s most iconic unions is on the rocks. Thanks to Homer’s narcolepsy, he and Marge are reportedly going their separate ways at the start of the 27th season of The Simpsons, which premieres September 27 on FOX. “It’s an incredible strain on the marriage,” producer Al Jean told Variety. “Homer and Marge legally separate, and Homer falls in love with his pharmacist, who’s voiced by Lena Dunham.”

Narcolepsy drove the fictional wedge between those two beloved bright-yellow TV characters, but what effect does it have on real-life relationships? Julie Flygare, J.D., a 31-year-old woman with narcolepsy, talks about how her disorder has influenced her love life.

I have a severe case of narcolepsy with cataplexy, which means I experience sleepiness combined with muscle weakness when I feel certain emotions. When I was in college, I was tired a lot, but didn’t recognize it as a sleep disorder. I was trying to keep up with classes at Brown University and played varsity squash, so I thought it was just my busy schedule. I started going to the bathroom during every single class to wake myself up. I would slap myself in the face as hard as I could and pinch myself, run cold water on the back of my neck and forehead, do jumping jacks, anything to mentally move me out of the fogginess.

When I was 21, I experienced another cardinal symptom of narcolepsy: I was laughing at a joke with my roommate in the living room, and my knees buckled slightly, as if someone had poked me behind them. It started happening more frequently with laughing, like when I laughed at something funny at a party, I almost fumbled a glass of wine. Then I started noticing it happening with annoyance. Once when I had the walk signal at a crosswalk, a car almost started to turn. I shot the driver a glance like “don’t you dare,” and my knees buckled pretty badly. It would even happen during sexual excitement: With orgasms, my head would start falling back like I had whiplash. It was really uncomfortable. It turned out to be cataplexy, which is muscle weakness when you experience emotions like humor, annoyance, anger, and surprise. The muscle weakness can be anything like slight buckling of the knees, eye fluttering, jaw slackening, or completely flopping over for 30 seconds to two minutes. In that time, I’m paralyzed and unable to move anything or speak. It feels like being in a corpse.

After I graduated from college and moved to Boston, other symptoms started. One night, I woke up in my apartment and heard a burglar breaking into the living room. I could hear him fiddling with the window, then saw my bedroom door open and a man running at me with his arms stretched out toward my neck. I wanted to push him or run away, but I couldn’t move, so I ended up fighting with my own body. The next thing I know, I look up and he’s not there. At that point I could move, so I went out into the living room. There was no sign of a break-in at the window, which was crazy to me. It was so vivid, but my roommate was still asleep. I realized she couldn’t have slept through all that noise, so I decided it hadn’t happened. That was my first episode of hypnagogic hallucinations and sleep paralysis. The hallucinations happen when you’re falling asleep or waking up and can see, touch, and hear things as though they’re real; sleep paralysis means you can’t move. The two are usually combined for me.

I would try to explain how tired I was, but it was hard to get him to understand. He was more understanding about the orgasms and cataplexy; for the most part we just thought it was this weird thing. The diagnosis was life-changing for me. I had to start taking medication once before bed and once in the middle of the night, and I couldn’t drink alcohol, which was a big part of our social scene.

I felt really isolated, and I realized I was having a hard time getting my boyfriend to empathize. It was hard for me not to be able to drink alcohol, but I’d go out and try to put on a good face to make everyone else feel comfortable. My then-boyfriend just didn’t say the most sensitive things, like once he told me he felt awkward drinking in front of me. We didn’t have issues before that, but within a few months of my diagnosis, he broke up with me. ‘We aren’t having fun anymore’ was pretty much the best answer I got about why. I don’t think it was entirely because of my narcolepsy, but I suspect it was a big part.

At first, I started telling people about my diagnosis and got such bad responses. They seemed to think it was a joke, like, “Are you going to fall asleep now? How about now?” So I stopped saying anything unless someone needed to know. When I was 24, I waited until the fourth or fifth date before I finally told someone I was seeing. It was my inclination to keep it so secret, but I kind of burst out like, “I have narcolepsy!” I cried and was being super dramatic. He was confused about why I was so upset about telling him this news and why I had hid it from him. I was just so scared of his reaction. It probably wasn’t the best approach. It wasn’t a deal-breaker for him, so we kept dating after that…but it didn’t turn into anything super serious.

I actually dated a guy with narcolepsy when I was 27. It was kind of fun because we could nap together. In previous relationships, having to take nap breaks out of your social life was stressful. It was nice because we both had that need to nap, but ultimately you need yin and yang. We were both caring for each other and both didn’t have a ton of energy to do so.

There was one guy I went on a first date with when I was 28. At that point, I was writing a book, I was blogging, and I felt like I’d turned narcolepsy into a really positive thing in my life, so I presented it that way. He was just like, “Is there anything else wrong with you I should know about now?” That was really startling. I didn’t feel it was something “wrong” with me anymore. I was very empowered. I think my narcolepsy has helped weed out people who aren’t able to understand that something so challenging for me has also been a source of passion and turned my life into something I never imagined.

My last boyfriend and I broke up four months ago after dating for two and a half years. He was a magazine editor and featured me on the cover of the magazine before we started dating, so he was very much aware of it. I don’t think my narcolepsy was the reason we broke up at all. He helped me come up with coping mechanisms, like we realized that sometimes when I wake up from naps, I have a lot of adrenaline and anger that truly doesn’t feel like me at all. I would find a “reason” to be upset with him that was not deserved. So we made a rule of doing our own thing for a good 20 minutes after I woke up from a nap.

He was also very aware and in-tune with my cataplexy and could hear it in my voice before I would even realize I was having an attack. Because my jaw slackening would be one of the first ways the muscle paralysis would come through, I would slightly slur my words. He would say, “Okay, sit down, give yourself a second, Julie,” to make sure I wouldn’t fall and hurt myself if the cataplexy attack got worse. He was very supportive of my narcolepsy; it was just other aspects of our relationship that weren’t working.

When I date, my narcolepsy is an important thing for someone to know about me. I’m extremely proud of what I’ve accomplished, like having written an award-winning memoir on the subject and having run two marathons. Running one with narcolepsy with cataplexy is a special badge of honor! I think of it as a point of pride for me and try to instill that in other people. But even if a guy is initially understanding, it’ll still be a process for him to understand the subtleties, like when my cataplexy is coming on.

Narcolepsy can definitely be very serious and affect people’s marriages and relationships, but this happens a lot—that it gets used as a plot line for a quick laugh. I haven’t seen an accurate Hollywood portrayal of narcolepsy. I’m not expecting to see Homer have cataplexy and hypnagogic hallucinations. If he did and he and Marge broke up, that would make sense to me, but just knowing the nature of Hollywood’s version of narcolepsy, I don’t think that will be the case.

It can happen that some people with narcolepsy fall asleep standing or in the middle of conversation, but it’s certainly not typical narcolepsy. It’s not what a doctor would look for to diagnose you. I think part of it is based on a misperception of cataplexy because I could be in the middle of a conversation and collapse. It might look like I’m asleep, but I’m conscious and totally terrified. You would never look at cataplexy and think it’s hilarious. That’s not to say I don’t have a sense of humor about it, but it’s important for people to know it’s a serious condition.

I was going to say maybe Homer and I could date, but I don’t actually think so—we’d both be too exhausted to care for each other! I do want to invite him to my support group, though. We have a great one in L.A.

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