Explaining Sleep Attacks: It's Nothing Like Being "Tired"

Recently, on a dull weekday afternoon, I found myself needing to (once again!) find a way to explain what a sleep attack is.

I recently received a mysterious letter in the mail. The moment that I opened the pale blue envelope and read the sentence, "jury summons" – I knew that I'd once again need to find a way to explain what a sleep attack is.

"I am unable to serve as a juror due to having sleep attacks from a condition known as severe type 1 narcolepsy. This is a permanent neurological condition that renders me involuntarily into sleep episodes several times per day, unexpectedly. This would prevent me from being an effective juror. Please let me know how to proceed."

That's it, that's the email. Yet I agonized over it. Was I clear enough? Did I give enough details? Did I NOT give enough details?

I grit my teeth, send the email, and try to picture what I would think if I were in their shoes and had never heard of a sleep attack or narcolepsy before.

Explaining a narcolepsy sleep attack, again

Even though I have had narcolepsy for ten years now, I still find it difficult to describe what a sleep attack is and how it affects those of us with the condition. The truth is, suddenly becoming overwhelmingly sleepy affects every part of my life.

When it comes to narcolepsy, being tired all the time is a fact of life.

Why being tired isn't the same as a narcolepsy sleep attack

Most people understand what it feels like to be tired. It's a pretty universal experience, after all. However, one of the symptoms associated with narcolepsy is overwhelming neurological sleepiness, which is sometimes referred to as "sleep attacks."

For people with narcolepsy, "sleep attacks" can be disruptive to daily life, and can even be dangerous in certain environments. This symptom affects our safety, education, quality of life, relationships, and employment.

Because while most people understand the feeling of being tired, they have most likely never felt the overwhelming sleepiness that narcolepsy causes. Colloquially, I label these involuntary episodes of sleep as "sleep attacks."

Sleep attacks are involuntary

If I said the word "sleep attack" to anyone with narcolepsy, they would know exactly what I meant. But with narcolepsy facing low levels of public awareness and high levels of stigma in the media and the job market as a whole, when I say the word "sleep attack," the average person often doesn't even have the barest context by which to understand what that symptom looks like.

When I say "sleep attack," I don't mean that I suddenly decide to take a nap. I mean that my brain can become so overwhelmed by sleepiness that staying awake becomes increasingly difficult, and then impossible.

I'm describing something much more extreme than needing another cup of coffee. I'm describing my brain telling me that it is time to sleep while the rest of my life is telling me that it isn't.

It is not something that I can simply decide not to do. I can't "try harder" to stay awake in order to avoid a sleep attack. That's what makes sleep attacks so difficult to explain – they aren't a choice. The distinction between being sleepy and experiencing unpredictable, involuntary sleep episodes is important.

Why narcolepsy sleep attacks are a liability

For people with narcolepsy, sleep attacks can be disruptive to daily life and can even be dangerous in some environments, such as the workplace or while operating machinery or vehicles.

This is one reason why something as ordinary as receiving a jury summons as a person with narcolepsy can become quite complicated.

So, what do I want people to understand?

What I want people to understand about narcolepsy

I don't expect everyone to understand exactly what a sleep attack feels like.

What I do hope people understand is that when someone with narcolepsy says they are experiencing a sleep attack, we are not simply saying, "I'm a little tired."

We're telling you that our brain's ability to regulate wakefulness is failing us, that we are losing a neurological battle.

So the next time someone with narcolepsy says they need to stop, sit down, take a nap, leave an event, or can't safely participate in something, please believe us! We aren't being lazy or dramatic. We are sharing what we are going through.

And sometimes, the most helpful thing you can give someone with narcolepsy is the space to listen.