Relationships and Narcolepsy: Communicating Our Needs

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!

This time I’ll be discussing the importance of clearly communicating the needs that come with our narcolepsy. Even in stable, long term relationships, it can be difficult to feel like we will be heard and understood by a person who has never experienced our life or our symptoms, and no one likes to be labeled as a “complainer” or “drama queen”. However, people with narcolepsy must ensure that we are open about our needs in order to maintain a strong connection and not build resentment over time.

Why our needs matter

Being open about your narcolepsy isn’t just a conversation for the beginning of a relationship when you are first explaining the basics of your symptoms... it lasts a lifetime. Symptoms change, life circumstances evolve, and no two days with narcolepsy are the same! It is essential to continue making sure that your needs are met, and that you aren’t silencing yourself for fear of being “inconvenient.”

While narcolepsy might not make it obvious for people to see that we are struggling, our issues are just as real and significant as any other health condition, and we deserve to have them taken seriously - especially by those we love! Having an invisible illness means having to rely on our communication skills to let our partners know when and how we are struggling because the signs can be incredibly subtle and even the most empathetic partner will never be able to read our minds!

Learning to be open about my needs

On the positive side, being open about your needs over time is a great way to help your partner to get to know the fluctuations of your narcolepsy better. I have a little catchphrase I often use, which I find applicable to many aspects of life: “if I never let someone know when there is a problem, they can’t do anything to help me solve it.”

Admittedly, I used to find this extremely difficult. As a young person, I never learned to advocate for myself in a healthy way - constantly afraid of being viewed as too needy, negative, or overdramatic for simply stating my truth. Luckily, I have learned throughout my adult life that being open about what I need, and explaining exactly why is so helpful in allowing a partner to pick up on things that could potentially cause an issue.

More information allows more understanding

My current partner is now great at remembering the types of situations that can cause my sleepiness or other symptoms, and this means I don’t have to explain myself at points where I’m already exhausted beyond being able to string a sentence together!

Being open has also significantly decreased my anxiety because I now trust that I can go to my partner with any concerns without judgment. Even if we’re both super busy one week and I have to cancel the one single plan we had together because I’m beyond exhausted, he won’t question me because he can understand immediately that it’s for the best. We are both well aware of how grumpy I can get when pushed past my limits, so it’s best to let me get my much-needed rest and wait for another day.

Getting creative with communication

Sometimes when you are sleepy all the time it can be hard to find the words to describe exactly how you feel or why. Personally, I often find writing things down to be easier, as it gives me time to consider what I’m saying and find the words that often fail me in the moment.

While I usually try to address issues as soon as they arise, sometimes it is best for me to wait until I am better able to communicate clearly, either verbally or through text. This also prevents me from getting unnecessarily moody at my partner in moments that I’m overwhelmed by sleepiness.

A numbered sleepiness scale

Over the years, I have heard some interesting ways that couples have tried to overcome their communication issues in the face of narcolepsy. One couple invented a numbered sleepiness scale ranging from 1-5, to help the person without narcolepsy understand exactly where their partner was at. For example, a 1 might represent being as awake as possible, the 3 rating might indicate that the person is feeling their sleepiness and yawns creeping in, while 5 might be a signal to steer clear altogether as the person is extremely exhausted and needs a nap - desperately!

Secret signals

Another couple used secret signals in order for the person with narcolepsy to be able to say, “I’m getting to the end of my battery life and if I don’t recharge soon I’m going to crash,” without even speaking! Using hand signals allowed for this message to be communicated without having to bring up narcolepsy in any environment where the person with narcolepsy didn’t feel safe or comfortable disclosing their condition. Upon noticing the signal, their partner could then help explain the situation or make excuses, seek out a venue for the person to nap safely, or simply take them home depending on the situation.

The basis of a strong, equal relationship

At the end of the day, communication and openness is an essential part of any relationship, and I’m sure this isn’t the first time you’ve read that! However, I hope this article has made you think a little more about how you approach communication in your relationships and the importance of letting your needs be known - especially when many of our needs are invisible. The best couples are able to tackle life from a united perspective, and this can’t happen if you’re too afraid to let your partner know what you need and when!

To finish up, don’t forget that while the person with narcolepsy will have many different needs to consider, the partner without narcolepsy also has needs of their own that need to be communicated and taken seriously. Balance is essential in a good relationship, and no one can be a good support for their partner when they are forgoing their own mental and emotional health! Make sure that assistance and encouragement are plentiful, and flow in both directions.

What about you?

I’d love to hear your thoughts on communicating needs in our relationships. Have you struggled with being open about your needs? Or perhaps you have a unique way of communicating with your partner when you get sleepy? Let me know in the comments!