What Nobody Talks About: The Severe Social Impact of Narcolepsy

When we speak of narcolepsy, we speak of symptoms. We speak of being unable to engage in passive activities without falling asleep. We speak of falling to the ground like a bag of bones when we experience strong emotions. We speak of being paralyzed in our sleep. We speak of speaking in our sleep.

Beyond biology: The hidden social ramifications of narcolepsy

These are all real biological symptoms. Very hard (if not impossible) to understand without experiencing them. Only an asthmatic knows what it feels like to be severely short of breath and wheezing, trying to inhale like your life depends on it, but unable to breathe.

What we don't speak about are the social ramifications of these symptoms. Not quite as hard to understand for the non-narcoleptics.

What is it like to fall asleep in a social setting, and to wake up and see everyone in the room chuckling at you, knowing that they are all laughing at how you fell asleep mid conversation? While you're busy fighting your own neurobiology, you are looked at as an oddity, or even somewhat of a freak, for something completely out of your control.

Fighting public narcolepsy stigma and the fear of falling asleep

What is it like to wake up and see your friends laughing, having taken pictures of you sitting at a bar counter with your head dangling out in front of you, when you have no memory of having fallen asleep whatsoever? The pictures circulate and spread, and everyone has a laugh at your expense. There's nothing you can do but smile and go along with the punches, acting like it doesn't matter to you.

What is it like when you hit it off with a cute girl in the group, strike up some amazing conversation, feel the sparks, and then you fall asleep later in the same group setting in front of her? Sparks gone, replaced by some noxious combination of laughter, pity, and invisibility.

What is it like to just want to lie down with someone you love, cuddle with them, and enjoy one another's presence, only to start snoring two minutes later? You feel incapable of providing such core and pivotal experiences, and they feel boring, inadequate, or just frustrated.

Nobody talks about these things. Nobody talks about how much calculation and thought has to go into what is a simple activity for others.

The exhausting mental math of living with narcolepsy

Let's say a normal person wants to go out for a lunch with some family friends, then head out for some drinks with friends, and head back home for some relaxing time with your partner. The only questions are: Do I want to do this or not? Do I have the time to do this or not?

Put a narcoleptic in that same situation. Now there are more questions:

• How will I get there? I can't drive without literally endangering the world, so I will need to spend more money than the average person, getting from A to B to C.
• Will I have time to take a nap before the lunch?
• After the lunch, before the drinks? After the drinks, before meeting my partner?

If I go for any one of these activities, slightly unrested, I may find an embarrassing picture of myself doing the rounds, or might be ostracized by yet another person or group of people, branded yet again, not by my character or my personality, but as "that guy who falls asleep all the time."

It doesn't even have to be all the time. If it happens 2 out of 5 times, that's enough for it to be an identifying factor.

Sure, good friends should understand and be understanding of this aspect of your life, but when you're only meeting for two hours, if you're asleep for one, it's almost like there's no point in you being there. And everyone who's there isn't going to be your best friend, understanding your issue with your best interests at heart.

God forbid, the plans suddenly change, and everyone decides to go to a music gig with an artist that you've never heard before. What if you fall asleep on the dance floor? Or you fight that urge and then sit down to have a drink and fall asleep there? If the activity has the potential to be slightly uninteresting, the amount of fear involved in falling asleep is inexplicable.

How daytime sleepiness disrupts careers and relationships

Try making friends at work when they always see you nodding off at your computer, your head bobbing up and down. Try keeping a job when you can't stay awake during meetings. The fear of passive activities seems irrational to others but is the most rational and real thing in my life.

Imagine being unable to read a book in your free time. Unable to successfully watch shows or movies without taking breaks in between, dozing off and then waking up to find that you have no idea what is going on and when you fell asleep.

Sometimes, you have to do something you don't really enjoy too much that your partner enjoys. It's part of a relationship, and it's part of showing your partner that you care for them and you're willing to show up for them. No such hope for narcoleptics though - if the activity is remotely uninteresting or passive, it doesn't matter how much I love you or how much I want to be there for you. Biology overpowers will, and sleep strikes.

The isolation of teen narcolepsy and cataplexy attacks

Kids in high school are terrible. We all know this. But nobody knows this more than a narcoleptic. How do you think teenage boys act towards the one guy in the classroom who constantly falls asleep, in class and out of class?

It's never kind.

You will wake up often with toothpaste in your hair, "artwork" drawn on your face, half your belongings missing, or falling to the ground as someone pulls out the chair you dozed off in.

Don't expect to be called to social activities outside of school, and don't expect women to show you any interest. Unless you're incredibly charismatic, as far as everyone else is concerned, you are the weirdo with issues.

If your cataplexy is triggered by laughter, as is often the case, enjoy the double whammy. As soon as you start to laugh, a warm feeling spreads from your head to your toes. Your arms go limp, your chin hits your chest, your knees buckle, and your jaw loses all shape and form.

It looks like you are falling asleep for just seconds, only to jerk back to life as you try to fight it, and then slump again, until the stimulus is gone. Try getting anyone to view you as anything close to normal after that.

Imagine - you can't engage in activities or environments that are funny or make you laugh! What kind of life is that?

Sports become impossible. If nervousness triggers your cataplexy, every time you are about to try a crossover and get to the basket, the familiar feeling of your legs turning to jelly takes over, and the ball is out of your hands well before you even reach the defender.

The psychological trauma and medication gaps in narcolepsy care

Some people have access to Xyrem or Xywav and can experience a normal life and sleep at night. I have nothing but the utmost envy and jealousy of you people.

I would gladly trade a kidney and whatever money I have for the chance to experience that side of normalcy. Some people are able to find a combination of stimulants and antidepressants that work for them.

The rest of us are stuck, with no access to Xyrem/Xywav, and just a questionably effective combination of antidepressants and stimulants. Let's not even get into the sexual dysfunction side effects of antidepressants.

It's not just about falling asleep or losing muscle control. These are biological symptoms. And they're rough. But the social impact of being a narcoleptic leave lasting psychological wounds and impacts that will never heal.

Every day, you have to keep picking yourself up, and trying to piece together the puzzle that resembles a normal life without all the puzzle pieces.

It's not always easy to find the motivation to keep going. It's hard to keep yourself from stopping and wondering, dreaming about all the things that you could have done and the life you could have led if you were somewhere where you had access to the right kind of medication, or if you were not narcoleptic.

It's hard to continue trudging through the tunnel when you can't see the light at the end.