Why are people with narcolepsy constantly subjected to the ridiculous statement, "I wish I could sleep that much?"
Not like that, you don't. Narcolepsy is by no means fun or funny. Here are five things you should know about this sleep disorder.
1. Narcolepsy is a serious disease.
Narcolepsy is a neurological autoimmune sleep disorder. People with narcolepsy suffer from a variety of symptoms: extreme exhaustion, unregulated sleep-wake cycles, hallucinations, sleep paralysis, and others.
When someone with narcolepsy abruptly falls asleep in public, it's known as a "sleep attack." Before you laugh at the idea of someone being attacked by sleep, the closest feeling that people without narcolepsy have to a "sleep attack" is the uncontrollable sensation of drowsiness that hits after being awake for 48 to 72 hours straight.
2. There is no known cure, and the few treatment options are not ideal.
Out of the many medicines and drugs I tried, the only one that actually addressed my symptoms effectively had a marked downside...it put me in the hospital.
I was extremely sick, constantly nauseated, and struggled to eat for ten months - dropping below 100 pounds - before my doctors finally figured out what was going on and took me off the drug. My advice to those who can't sleep well? Keep trying things until you find what works for you - we're all different. A good night's sleep is worth the effort!
3. While people with narcolepsy do need others to be flexible and understanding, we aren't made of glass.
Narcolepsy sufferers do need a certain amount of accommodations to be able to function in today's society. However, it's also crucial that you don't treat us as if we can't do anything for ourselves - people with narcolepsy are really tough! We have to be. If we need something, you can count on us to let you know.
4. The media has no idea how to portray narcolepsy.
A typical depiction of narcolepsy appears in the 2001 comedy hit film Rat Race. Many people find the movie to be very funny. Unfortunately, Rowan Atkinson's depiction of narcolepsy completely misses the mark. If someone is making jokes about narcolepsy or portraying it as something funny, the "information" they are providing is incorrect. They are just perpetuating false stereotypes. If you're looking for accurate information, there are a few places listed at the end of this post that I'd recommend you check out.
5. If you have narcolepsy, you aren't alone - there's hope!
Since my diagnosis three years ago, I've been working hard to adjust to my new normal, and my family and friends are amazed at how far I've come. There may not be a cure yet, but there are plenty of strategies and resources out there that can help you thrive.
In my opinion, the best place to start is the Narcolepsy Network, an organization that exists for the express purpose of providing information and support to people with narcolepsy and their families and friends.
You might also like to take a look at Narcolepsy: Not Alone, a campaign started by the non-profit organization Project Sleep to raise awareness about the disease.
Finally, you can reach out to me! I want to help other people with narcolepsy. I'm living the life I want to live, and I want everyone else to have that chance too!