What you should know about Narcolepsy

This is the first in a series about mental illnesses. Read the intro to the series here.

In A.P. Psychology we all watched in delight as Rusty, the narcoleptic dog, collapsed midstride into a deep slumber. One second he was bouncing through a meadow, and the next he was flat on the ground dreaming of steaks. And we laughed and laughed and laughed. And just like two year olds we said, “AGAIN!” each time the video clip was over.
Someone close to me has narcolepsy. People love to tell me stories about him falling asleep at inopportune times. They think it is hilarious that someone would fall asleep at a baseball game, during calculus test, at the state fair, or at the dinner table. They promise me that they are not making it up, as if I would never believe it. They wonder at why he is so tired and hypothesize about the reason.

What they don’t realize is that he hates these stories. He hates feeling miserably tired every single day and hates having uncontrollable sleep attacks. He hates feeling the onset at a party and realizing that he doesn’t have much longer before it hits him. The image of someone falling asleep in their mac and cheese is maybe a little funny in a slap stick, 10 year old kind of way, but it is less funny to fall asleep during an important conversation or when you paid $40 to hear a band play and you miss the whole set. It’s less funny to fall asleep at a job interview, even less funny if you can’t wake up to the sound of your baby crying, and not funny at all if you fall asleep while you are driving. Right around the time when I was sitting in class laughing about Rusty, my friend (before he was diagnosed) was driving home from high school in rush hour traffic. He veered into the lane of oncoming traffic, and into someone’s yard just missing their front door. Thankfully the damage was confined to the car and a ceramic gnome.

I get irritated with people’s ignorance about narcolepsy, but I really can’t blame them. After all, I was just as amused by Rusty, the narcoleptic dog, as the next person. I learned about the condition, but I didn’t think very deeply about the implications. I understood and memorized all of the clinical facts about it (the brain skipping to REM sleep, the body going limp, the triggers, etc.) but I didn’t really consider what a real person with narcolepsy has to live with.
1 in 3000 Americans has Narcolepsy with Cataplexy so it is very likely that you know or will know someone affected by the condition. Here are 6 things you should know so that you can be understanding, rather than obnoxious.
1. Narcolepsy is a neurological disorder- NOT caused by psychological problems, emotional distress, personality type, bad habits, improper sleep training as a baby, nor anything else that someone did or didn’t do.

2. It is not the same as being tired a lot.

3. Playing tricks (i.e. drawing on their face, taking their picture, putting things in their mouth) on someone who accidently falls asleep is just not that cool.

4. Medicine and caffeine help a great deal in managing symptoms day to day, but there is no cure. It usually begins in adolescents and sticks around for the rest of life.

5. It is classified as a sleep disorder, but it is more of a “wake” disorder. People often confuse it with sleep apnea or insomnia but these are about not being able to sleep or not having high quality sleep, whereas narcolepsy is the opposite.

6. Though it may appear that people with narcolepsy are super laid back, lazy or stoned, this is not necessarily the case.

If you’ve been recently diagnosed with narcolepsy, I want you to know there is a bright side. Here are some benefits to having this disorder that your doctor won’t tell you:

1. Espresso at midnight? No problem. My friend says that at a certain point, using caffeine to stay awake is like using bicycle breaks to stop a train.
2. No tossing and turning, obsessing about the stupid comment you made earlier or counting sheep. Just lie down and start dreaming within seconds!

3. No trouble falling asleep camping, in an airplane or airport, in a bus, or on a cement slab.

4. Time travel through boring lectures or church services.

5. Wake up feeling refreshed no matter how long you slept.

6. The ability to take a 20 second nap right before a life insurance appointment causing your resting heart rate to resemble a world class athlete.

7. And finally, a practice my friend likes to call, “Swinging the Pendulum.” Slam an energy drink or take your prescribed medication followed immediately by a short nap. The caffeine takes affect while you are sleeping and you wake up super charged.

As with any disorder, narcolepsy is something that some people have to live with, but it does not define them. As a therapist, I think of myself as strength-based, meaning that I think what is right with people is much more worth focusing on than what is wrong. However, I think it is good to talk and learn about these things that make us all unique so we can understand each other and be better to each other.

3 thoughts on “What you should know about Narcolepsy

  1. Well done Bec! Other topics — hoarding, Asperger’s, autism, addictions, ADHD, depression with anxiety causing school truancy.

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