Remember that scene in the movie “Deuce Bigelo: Male Gigolo” where Rob Schneider’s character goes on a date with a woman who keeps falling asleep at dinner?
It was an amusing scene for most of us watching. The idea that someone could be so sleepy that they could just knock out at dinner sounded so ridiculous that you couldn’t help but laugh. Unless, of course, this on-screen joke was actually a partial reflection of your reality.
This reality is something that many narcoleptics, such as myself, must face on a regular basis.
Narcolepsy is a sleeping/neurological disorder that causes people to suffer from a variety of symptoms including, but not limited to, excessive daytime sleepiness or EDS, cataplexy (a sudden loss of muscle tone), hallucinations, memory loss, sleep paralysis, depression, and insomnia. Each narcoleptic experiences different symptoms and at varying strengths, though most, if not all, experience some form of EDS or overall increased exhaustion. For me personally, I mainly have EDS, with a low level of cataplexy, hallucinations, and insomnia.
I was diagnosed with narcolepsy when I was only in the seventh grade, though I began displaying symptoms as early as sixth grade, when I found myself falling asleep in all of my classes. The worst part was nobody knew what was wrong with me. My teachers thought I was lazy or had untreated diabetes, while my doctor said I was merely experiencing puberty. It wasn’t until my parents stumbled onto a documentary about narcolepsy that I received the proper diagnosis. This is unfortunately a battle that many PWNs (People With Narcolepsy) face prior to diagnosis. With such a small emphasis placed on this disorder in medical school, many doctors have little to no experience recognizing its symptoms. In addition, it is very common for people not to recognize that the exhaustion they are experiencing is in fact a symptom of a much larger disorder.
Being properly diagnosed is certainly only the first battle in the war that PWNs face. Many struggle to balance work, school and personal lives with their narcolepsy. Despite explaining our circumstances to friends, family and employers, many of us still face misunderstandings and scrutiny from those around us. Comments such as, “Yeah, I get sleepy sometimes, too,” or, “I'm sure if you just force yourself to stay awake, you could,” begin to take their toll on most narcoleptics, as they are the equivalent of telling someone with anxiety that “I get nervous, too,” or suggesting that an epileptic “just force himself to stop seizing.” The reality is that the sleepiness and exhaustion that narcoleptics experience is uncontrollable. There is no amount of arm pinching, water throwing or alarm blaring that can change that, and although medication helps, there is still no cure for this disorder. It is my belief that the first step to getting a cure is for people to understand that narcolepsy is real. It is real and it is a serious life-altering sleeping disorder that deserves the same amount of attention as any other disorder or disease.
I hope you share this with your friends and family. If not for the diagnosed PWNs in the world, then for those who remain undiagnosed and unaware that they are not alone and what they are experiencing is not their fault.
