Do you like a challenge? How about a pop quiz?
Then tell me this… do you know what narcolepsy is?
If you think you know, then please answer the next question.
Which of the following statements are true?
A. People with narcolepsy experience daytime sleepiness that feels comparable to going without sleep for two or three days.
B. People with narcolepsy struggle to stay asleep at night.
C. People with narcolepsy experience hallucinations upon falling asleep and waking up.
D. A common symptom of narcolepsy is cataplexy, in which strong emotions like anger or laughter cause sudden loss of muscle control.
E. There is no cure for narcolepsy.
F. All of the above
I bet you want to know if you guessed right.
Well I’m not going to tell you… ha ha. I’m going to make you look it up…
Just kidding! The answer is all of the above. But I strongly encourage you to dig deeper – as the question suggests, there is a lot more to narcolepsy than you might have previously thought.
Why am I telling you this?
This past weekend I attended the Central Texas Narcolepsy Forum at Austin Community College. About 150 people showed up; many were diagnosed and living with narcolepsy. Of all the material covered, my biggest take-away was how little people know about narcolepsy and how much stigma still surrounds it. I heard personal stories of how people are frequently misperceived as lazy or overdramatic or completely denied their diagnosis.
One frustrating example came from a young woman at my table who had been diagnosed just three months earlier. She told me that recently while experiencing a lot of symptoms at work one day, her boss, a medical doctor, asked her, “What’s wrong?” So she told him: “I have narcolepsy.”
And incredibly his answer was, “No, you don’t have that” to which she repeated: “Yes, I do. I was diagnosed.”
Sadly, this lack of understanding is not rare. In fact, one of the speakers at the forum explained that doctors on average receive only about two hours of sleep education. So, it’s possible that after reading this blog, you may now know more about narcolepsy than your doctor.
While this may be good news for your future career in sleep science, it certainly isn’t for the 1 in 2,000 people with narcolepsy who on average wait seven years after the onset of symptoms to receive an accurate diagnosis. Which is to say nothing of the time spent educating themselves about their condition, trying medications that may or may not work, adapting to a sleep schedule which doesn’t translate well to a 40-hour, 9-5 workweek, and having to explain their condition to others who would rather make light of something they saw in “Deuce Bigalow” than honestly listen to someone.
So the next time you hear someone say something about narcolepsy or make a joke about it, ask them, “Hey, what is narcolepsy?” See what they say.
Maybe they’ll have the right answer.
Maybe you’ll have an interesting conversation.
And maybe, just maybe, you’ll help someone get diagnosed or take part in ending the stigma and misinformation out there.
There is a ton more to learn about narcolepsy! Check out these links for more information:
Narcolepsy Fast Facts – Narcolepsy Network
Find Sleep Help & Resources for your Sleep Problems | Project Sleep
Nicole Lurea