How to Navigate Relationships With Narcolepsy

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Narcolepsy is a lifelong sleep condition that makes you very sleepy during the day. You might also have:

  • Unexpected attacks of sleep
  • Sleep paralysis, where you can’t move or speak when you wake up or start falling asleep
  • Hypnagogic hallucinations, where you might see, hear, or feel something that’s not there
  • Cataplexy, where you might start slurring your speech or be unable to move even though you’re awake

As a result, narcolepsy can affect many different parts of your life, including the relationships you build.

How Narcolepsy Can Affect Relationships

Narcolepsy can be misunderstood by people who aren’t familiar with it. For example, people who don’t know about narcolepsy might see you as lazy, even though that’s not what’s happening.

Emmanuel Mignot, MD, PhD, the director of the Stanford Center for Narcolepsy, is recognized as having discovered the cause of narcolepsy. He says one of the biggest misconceptions about narcolepsy is that people think the condition is “dramatic,” like someone falling asleep while riding a bike.

“It’s not,” he says. “Having narcolepsy, you fall asleep when it’s boring. It’s an exacerbation of normal behavior.”

Erin Holtz, who was diagnosed with narcolepsy in 2015, says that media portrayals of narcolepsy are often misleading.

For example, Holtz says lots of people expect her symptoms to be binary, such has being awake or asleep or being able to stand versus collapsing. But in reality, the symptoms can be sneaky and vary wildly, making it even more difficult for friends and family to understand.

“Lots of folks Google cataplexy and they come away with the understanding that if I laugh I will instantly and completely collapse,” she says. “Cataplexy occurs in various states of severity. Sometimes I lose my grip on whatever I’m holding, or I lose the muscle tone in my core and start tipping over from the waist up. It can cause me to slur words or even struggle to form any words at all. And sometimes it knocks me flat.”

Friends and family

The daytime sleepiness that’s common for those living with narcolepsy can make it more difficult to go to social events and activities with friends and family, especially in the evening, says Diego Carvalho, MD, a sleep medicine expert from Mayo Clinic.

“It can also affect their ability to actually socialize,” he says. “There is a significant overlap between narcolepsy, obesity, and depression. These comorbid conditions can contribute to social isolation, if not adequately addressed.”

Because narcolepsy is misunderstood, friends and family might make assumptions about you that aren’t true. For example, some people could think you’re being rude or even think you’re “faking.”

“Patients with narcolepsy not adequately managed will often doze off inadvertently in social gatherings if they are not actively engaged,” Carvalho says. “Unfortunately, this can often be interpreted as the person is not interested in spending time with them.”

Holtz knows this all too well.

“In the early days there were several people that insisted it was all in my head or that I was misdiagnosed,” she says.

On one occasion, Holtz said she offered to visit a family member recovering from surgery. Later that day, she realized that a sleep attack was coming on hard and fast, so she texted the family member afterward to let them know why she didn’t come, expecting them to be a little disappointed. Instead, they were angry.

“They had been counting on me to help them and when I didn’t show up or call, they had to make other arrangements. I felt awful,” she recalls. “Now I simply don’t make promises of my time or assistance, in case I’m not able to follow through. Most of my family are understanding and realize … everything depends on what my symptoms will be like that day.”

For Julie Flygare, a narcolepsy advocate, author, and founder of the nonprofit Project Sleep, the condition was difficult for people to understand and also hard for her to explain.

“I didn’t really have the words,” she says. “So often, I felt like people didn’t get it and that created some distance between us. I did find some new friends who did seem to get it, and that was really special.”

It’s not uncommon for friends and family members might make jokes or see narcolepsy as funny.

“It’s not a joke,” Flygare says. “Some people do approach it with humor, saying, like, ‘Oh, are you going to fall asleep right now?’ and can be a turnoff.”

When Flygare was in law school, there was a “work hard, play hard” culture. After being diagnosed with narcolepsy, there were some lifestyle changes that affected her dynamic with friends and classmates. For example, she no longer drank alcohol because of her medication.

“It was really tough. I felt like I was living with this new thing that was becoming such a big part of my life, even though I didn’t want narcolepsy to be a part of my life. I wanted to be the same Julie and I still was the same Julie, in many ways,” she says.

Co-workers

When you have narcolepsy and it’s not treated properly, you could have trouble at work. For Joe Cole, who was diagnosed with narcolepsy in 2018, it was actually his manager at work who suggested he get tested for narcolepsy after he fell asleep during a meeting one day.

“If he hadn’t said anything, I might’ve just kept plugging along and never thought to get it checked,” he says.

Once you’re diagnosed with narcolepsy, telling your employer or even a trusted co-worker or two can help. There’s a fine line there, Cole says.

“It’s imperfect. How much do you disclose?” he says. “Yeah, the manager should probably know. But what about your teammates? What about people in another department that you work with often?”

Your employer can find ways to adjust and help you adapt. Some examples of accommodations include:

  • Breaking up boring or repetitive tasks
  • Recording meetings
  • Standing up when you’re working at your desk or during meetings
  • Taking naps during the day
  • Taking walks during the day

It’s illegal for someone to discriminate against you because you have narcolepsy. Because of the Americans with Disabilities Act (ADA), your employer is required to give you reasonable accommodations.

Cole says the accommodations he’s asked for in the past have yielded a “mixed bag of results” but completely depend on the situation.

Romantic Relationships and Narcolepsy

Strong feelings like joy or anger can trigger narcolepsy symptoms. This can affect aspects of your romantic relationships, such as dating, sex, and intimacy. Although not everyone with narcolepsy has cataplexy, for those who do, cataplexy can affect your romantic relationships, too.

Dating

Flygare had a boyfriend at the time of her diagnosis. They broke up soon after.

“He said we weren’t having fun anymore,” she says. “It definitely affected me. Then I worried that … now that I had a diagnosis, would someone want to date me? I had all these questions, like how would this be possible and normal?”

Flygare says she’s had her fair share of dating experiences. Once, after telling someone about her diagnosis, the date asked if there was “anything else wrong” with her that he should know about.

“It’s been interesting,” she says. “The positively spirited way I put it is that you can more quickly weed people out who maybe wouldn’t be good partners.”

On the other hand, Flygare’s story, journey, and advocacy have inspired other potential partners, and she emphasizes that everyone’s case is different.

For example, for some people with narcolepsy, sleep paralysis (where you’re awake but can’t move) can be a factor. It usually happens just as you’re falling asleep or when you’re starting to wake up.

Hypnologic hallucinations — when you might see, hear, or feel things that aren’t there right when you’re starting to wake up — can also be an issue.

Flygare says these hallucinations can make it confusing to decipher what’s happened and what hasn’t happened, which can affect people’s relationships, especially when you live in the same house or you share a bedroom with a partner.

“It can lead to some challenges where a person with narcolepsy thinks that a conversation has happened or a fight or something, and then learning that it hasn’t,” she says. “Waking up feeling very scared from a hypnagogic hallucination and then trying to jump right into your real life is really tough.”

With a former boyfriend, Flygare says they had a rule where neither of them engaged in conversation until about half an hour had passed from when she woke up, either from a nap or in the morning.

“Not in a mean way; we just walked around the apartment did our own thing for a little while, because I often woke up feeling not myself and feeling just agitated,” she says. “So, we just at least found that that can be something helpful to do.”

For Cole, dating hasn’t been much different. Narcolepsy hasn’t affected his romantic relationships.

He sees narcolepsy as both a strength and a weakness. “The way I describe narcolepsy is it’s my superpower, but also my super weakness: I can sleep anywhere, but also I can sleep anywhere.”

Flygare agrees. “The biggest thing is that it really varies a lot person to person, so it’s not like the movies,” she says. “It’s a complex experience. There’s strength as well that comes with living with a chronic condition.”

One thing Flygare recommends for the partners of those living with narcolepsy is flexibility. “Flexibility is helpful and trying to be understanding that narcolepsy is not the same every day,” she says. “So just because someone could do something the day before doesn’t mean that they might be able to do it the next day, so just respecting that.”

Sex and intimacy

Sometimes, when you’re sleepy all the time, that can affect your sex life. You might not feel like having sex as often, and when you do have sex, you might have a hard time climaxing.

Cataplexy could also be a potential factor, but not everyone who has narcolepsy has cataplexy as well. Plus, Mignot says sleepiness is usually more of an issue when it comes to sex and intimacy.

“When you have sex, there is even a chance of cataplexy when you have an orgasm,” Mignot says. “Cataplexy can be difficult, but I think it’s mostly due to sleepiness. It can be hard.”

Since being diagnosed, Holtz and her husband have changed the way they approach things.

“When we were first together and symptoms were still infrequent, we could go out for a nice dinner, then come home and enjoy each other’s company. But over time, that stopped being feasible, so we’ve adjusted how we approach dates,” she says. “We might have an elegant lunch with wine and candles. That way I still have energy afterwards for canoodling.”

Still, things don’t always go to plan, and that’s OK. Holtz says for whatever activity they have in mind, they try to plan it for a time when she has maximum wakefulness.

“Sleep attacks often derail things,” she says. “When that happens, we either take a nap together or my husband gathers up all the pillows and blankets in the house and tucks me in. It’s a different sort of intimacy than sex.”

For those dating a person with narcolepsy, Flygare recommends doing some of your own research as opposed to only relying on your partner to explain everything about narcolepsy, especially since narcolepsy can present differently in different people.

“I think it’s really great to get as much information as you can independently,” Flygare says. “There are a lot of great resources and organizations and other people sharing their stories. You can gather that kind of information and then go back to your partner or your loved one … and bring that information and say, ‘How does this compare to your experience?’ I think that can be a really nice way to start a conversation and to engage.”

Pregnancy and Parenting

With regard to pregnancy, one of the main concerns is medication. Carvalho says many pregnant women with narcolepsy worry about the potential side effects of the medication to their baby.

With all the medicine used to treat narcolepsy symptoms, there’s a small chance the baby could be harmed. If you’re pregnant and living with narcolepsy, you should talk to your doctor about whether or not it’s safe to keep taking the medication.

Carvalho recommends that women with narcolepsy discuss pregnancy plans before pregnancy with an OB/GYN and the doctor that manages the narcolepsy treatment.

“Given the uncertainty about the effect of some medications to the [baby], the care team should discuss about potential benefits and risks depending on each situation and make a shared decision,” he says. “If the patient is inclined to come out or reduce the dose of medications, proper counseling is required regarding the risk of drowsy driving, rebound cataplexy, or worsening depression.”

Getting Support

Getting the right medications and changing up your lifestyle can really help if you’re living with narcolepsy. For example, things like getting exercise, steering clear of triggers like alcohol and nicotine, taking naps, and sticking to a schedule can help.

“Recalling all the emotions I felt when I first got on medication, it was very much like, ‘Is this what normal people are supposed to feel like?’” Cole says. “I was just awake.”

Although creating a personalized plan that includes medication is a step that many people with narcolepsy take, getting support can be unintentionally left on the backburner. Finding the right support is important, Flygare says.
“There are organizations. I feel like a lot of articles online don’t ever take people to next steps, which is helping them find their community,” she says. “There are a few other organizations like Wake Up Narcolepsy and Narcolepsy Network.”

It’s up to you to find what works best for you.

“The main thing is that there’s ‘no one size fits all’ here,” Cole says. “There’s no ‘one size fits all’ treatment.”

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