Relationships and Narcolepsy: 3 Important Conversations

When it comes to relationships, every couple will have their issues - but when one of you has narcolepsy, this can bring up some unique challenges! As a person with narcolepsy, mental health professional and experienced dater, I’m writing a series on the relationship issues that have come up most frequently; in my own life and in conversations with other people with narcolepsy!

Having narcolepsy usually means coming to terms with the fact that what is best for most people may not be as helpful for us. This is also true within our relationships. Not only do our individual needs call for individual solutions, but they can also change frequently.

Today, I’ll be working through 3 of the most important topics to discuss as a couple, so you can have a set of common goals instead of running into issues with no plan!

How do we manage planning together?

First and most obviously, timing and scheduling can be extremely difficult for a person with narcolepsy. Even those of us who have our symptoms fairly well-managed can never entirely rule out a sudden sleep attack in an inopportune moment, or a bad night’s sleep that renders us useless the next day.

Flexibility

With this in mind, our partners absolutely must be able to be flexible and understanding in these moments. It doesn’t help anyone to put the blame on us personally, as our symptoms are largely out of our control. There may be things that partners can do to help. For example, reminding their loved one with narcolepsy well in advance of needing to leave the house for an engagement. However, it is useful to have a conversation around this type of communication as a couple and come to an agreement, as some people can find this annoying or patronising if unsolicited.

Structure

On the other hand, some people with narcolepsy find structure and planning extremely helpful in managing our sleepiness. If this is the case, people can help by informing their partner of any planned activities well ahead of time, and by helping to make these plans together (so that it doesn’t fall entirely on the person with narcolepsy, as organisation can be a big drain on us!) Ultimately, this should be a conversation about how different planning styles affect the person with narcolepsy, and how their partner can reasonably support that.

How active do we want to be together?

On the subject of planning activities, there is a lot of variation amongst people with narcolepsy in the amount of activity we want to enjoy with our partner. Some people with narcolepsy love to be encouraged and enabled by their partner to get active as often as possible, while others would find this extremely annoying and prefer a partner who had a similarly low-key energy.

Most of us will fit somewhere between these two, but it is worthwhile to discuss exactly what each of your preferences are and how you can best support each other in that. Just keep in mind that it is easy to get depressed if you are both enabling each other to sleep all day every day, so try to help each other to keep a healthy balance! It’s great for your mental health to have a partner to join you on a walk around the neighbourhood for some fresh air and movement, especially on days when you haven’t done much else.

How do we organise our sleeping arrangements?

As a person with narcolepsy, you get used to operating according to certain lifestyle patterns that may appear “weird” to other people with no knowledge of the logic behind them. One example is how some couples sleep at night.

Typically, when a couple is in a long term relationship or even live together, it is assumed that they will sleep in the same bed. Not sleeping together (in the strictly literal sense!) is often seen by society as an indicator that the relationship is on the rocks. Many studies have been conducted around whether sleeping alone or with a partner may be better or worse for our sleep quality, but ultimately no consensus has been agreed upon due to a lack of quality research.

Disruptive symptoms

When it comes to narcolepsy, sleeping at night can be a true ordeal. We have disrupted nighttime sleep, frequently tossing and turning all night and unable to settle or get any rest as our somnotypical partner sleeps soundly beside us. We can have hypnagogic or hypnopompic hallucinations, often leading us to yell, shriek, or grab onto the nearest human for help, which doesn’t lead to a good rest for our partner. I also tend to talk in my sleep when I am stressed, which only adds to the fun!

Sharing a bed

In the past, sleeping in bed with a partner was always a struggle for me. It was pure torture to watch them sleep soundly all night as I couldn’t shut my brain down, and at a certain point I vowed I would never sleep in a bed with another human again! I have since been lucky enough to access Xyrem, which allows me to sleep no matter what happens in my bed. However, for many people with narcolepsy sharing a bed remains a risk to getting the best possible sleep, which should be at the top of our priorities when living with this condition.

Avoiding misunderstandings

Personally, I think it’s very healthy for people with narcolepsy (and even those without!) to weigh up the benefits of sleeping separately from their partner at least some of the time. Of course, there are also plenty of people with narcolepsy who feel calmed and comforted by sharing a bed, which is also completely valid! Just make sure that the partner without narcolepsy knows what kinds of symptoms to be aware of to avoid some potentially frightening misunderstandings.

Keep conversations open

In general, it’s good to remember that many of the expected rules of life simply don’t square up to living with narcolepsy, and that’s going to be something that affects our relationships too. I see this as an opportunity rather than a burden because when we rely on what is expected of us, we often miss the chance to find better alternatives. When we can have clear and direct conversations about our wants and needs, we get to know our partner on a deeper level and can adapt to each other's preferences with intention instead of assumption!

Have you spoken to your partner about these issues? Do you sleep in the same bed as your partner? What other topics are important for people with narcolepsy to discuss in their relationships? We would love to hear your thoughts.