Living With Someone Who Has Narcolepsy

photo of michelle and mike

Living With Someone Who Has Narcolepsy

By Michelle Heil, as told to Keri Wiginton

When you think of narcolepsy, you might picture your uncle falling face-first into dinner. But that’s not really what it’s like, at least not for my husband. He doesn’t have cataplexy, so he doesn’t lose control of his muscles and drop.

Mike does get excessive daytime sleepiness, but sometimes his symptoms are subtle. We can have conversations where it seems like he’s paying attention, but he’s completely asleep. That doesn’t happen as much anymore because his condition is under pretty good control. He sees a sleep specialist and has a really good support system. And he’s on a new medication that works really well for him.

Right now, Mike’s narcolepsy doesn’t have much of an impact on me. But that hasn’t always been the case.

Something Wasn't Right

Mike and I started dating in 2009, but he didn’t know he had narcolepsy then. He got his diagnosis about a year later. Mike used to work an overnight job, so for a long time we thought that might be why he was so tired during the day. Even so, his sleep problems didn’t make sense.

Eventually, it became obvious Mike needed a sleep study. He lost consciousness while driving home one night and drove into someone else’s yard. No one got hurt, and the owners weren’t that upset. But that was a wake-up call. Something was wrong, and Mike really needed to go see someone.

The diagnosis process was frustrating at first. He doesn’t really like to ask for help, and it was hard to see him struggle through all of those tests without knowing what was going on. But once I found out Mike had narcolepsy, it made me feel better. I learned the reason for his sleepiness. He wasn’t just tired because he hung out with his friends too long or stayed up late.

That isn’t to say I never get frustrated. I’ll admit that it’s very easy to feel like your partner is using their narcolepsy to avoid certain things. For example, if I want Mike to help around the house -- like do the dishes -- then all of a sudden, he’s so tired he can’t get out of the chair. But he’ll have a burst of energy if his friends want him to go out. It’s not necessarily true -- that Mike's using narcolepsy as an excuse -- but it can feel that way sometimes.

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Tough Adjustments

It took a while for Mike to find a medication that helped. During that search, it wasn’t safe for him to drive by himself. Since we work for the same company, I could drive us both to work. But it meant I had to change a schedule I really liked. That wasn’t easy for me, partly because I lost some of my private time. I love my husband, but when you’re around your partner 24/7, it can get a little aggravating. 

For the first couple of years after his diagnosis, it seemed like our lives revolved around his sleep -- making sure he could fall asleep and stay asleep. One good thing is I’m a bit of an insomniac, but I would tiptoe around the house so nothing would disturb him.

I also used to have to wake him for his meds. With his first narcolepsy drug, you take one dose before you go to bed and another a little later. He didn’t always hear his alarm, so I’d have to set mine. He’d go to sleep and I’d go watch TV. Then I’d come back and wake him up for his second dose, which could be jarring.

Most of the time, when you wake up someone with narcolepsy, you’re pulling them out of a very vivid dream. For Mike, those are usually nightmares. He gets incredibly startled and seems ready to fight, regardless of how long he’s been asleep.

Mike also moves a lot while he dreams. He’s accidentally hit me in the face before. Obviously, he doesn’t know he’s doing this, and he feels bad about it. He tells me that he’s actually trying to protect me in most of his dreams.

We’ve lived together for 10 years, but we started sleeping in different rooms about 5 or 6 years ago. At first, I did it to take care of our sick dog. But I found that it works out for both of our sleep schedules. Plus, it means I can cuddle on the couch with our five cats and our new puppy. They wake Mike up when they sleep in the bed.

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Navigating Our Social Life

I always drive us home when we go out together, but I like to stay home a lot more than Mike does. So we have a rule -- one that all of his friends know about -- that he can’t drive home if he plans to have more than one drink. That’s because alcohol makes his narcolepsy worse. He also texts me when he leaves someplace or when he’s on his way home. That way, I know how long it should take him to get back.

I try to give him as much freedom and autonomy as possible. But we set these boundaries because I worry about him when we’re not together, even if his medicine works really well. That’s because one time, he forgot to tell me he was taking a nap before driving home. I panicked when I couldn’t get in touch with him.

Luckily, he completely understands that I’m terrified when I don’t know where he is. That helps us strike the right balance.

A New Understanding

I recently found out that I have multiple sclerosis. I think Mike’s narcolepsy helps him understand what I’m going through, and vice versa. And we have a tendency to get overwhelmed at opposite times. So when I’m at my breaking point, he can help keep me sane. I do the same for him.

Plus, after my diagnosis, I get why he was upset that people always thought he was lazy. I’m tired all the time, and now it makes perfect sense.

He also urges me to reach out to others who have MS. When he found out he had narcolepsy, it was like he was on an island by himself. Once he got more involved in his support network, it completely changed his outlook and how he handled things. It’s impressive how he doesn’t let his disease own him. He just happens to be a person with narcolepsy -- he’s not a narcoleptic.

But it’s taken a while to get to that place.

Michelle Heil, 38, and Mike Heil, 34, live near Mesa, AZ, with their dog and five cats. They work in finance and are rare disease advocates. Mike hosts a virtual support group for people with narcolepsy. You’ll find it on Twitter the first Saturday of the month under the hashtag #nchat. 

WebMD Feature Reviewed by Brunilda Nazario, MD on August 05, 2020
© 2020 WebMD, LLC. All rights reserved.

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