LIFESTYLE

What It's Like To Live With Narcolepsy (Spoiler Alert: It Looks Absolutely Terrifying)

21/10/2014 13:49 BST | Updated 21/10/2014 13:59 BST

To say that living with narcolepsy is difficult would be an understatement. But when people don't take your illness seriously, it can be ten times worse.

That's the issue that Sarah Elizabeth faces on a daily basis.

Sarah, who suffers narcolepsy with cataplexy, also knows just how frustrating and difficult it can be to explain what it's like to suffer with the illness - especially to those who have never witnessed a sleep attack in real life.

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Her latest YouTube video, originally filmed to present a choreographed Japanese dance, shows how things can soon turn serious with her condition. Viewers are left in shock as Sarah suffers an attack and falls to the floor.

In her video Sarah says: "Many people have asked me what happens with this condition, or have jokingly said they want to see me fall down or fall asleep because they think it would be funny to watch."

But the reality is that it isn't funny. It's very real.

"I filmed this by accident, and it was really weird to go back and watch later from an outside perspective. I am posting this video as a way to help educate people," she added.

"Just like people with epilepsy, I can't control having a sleep attack or cataplexy any more than they can control having a seizure."

Story continues below...

7 Sleep Conditions

What is narcolepsy?

Narcolepsy is a chronic brain disorder that involves poor control of sleep-wake cycles, according to the National Institute of Neurological Disorders and Stroke.

People with narcolepsy experience periods of extreme daytime sleepiness and sudden, irresistible bouts of sleep that can strike at any time. These “sleep attacks” usually last a few seconds to several minutes.

Meanwhile cataplexy, according to Narcolepsy UK, is an episode of muscular weakness which is triggered by strong emotions such as laughter, anger and surprise.

The loss of muscle tone ranges from a just-perceptible weakening of the facial muscles through weakness at the knees, to total collapse on the floor. Speech is slurred, eyesight impaired (double vision, inability to focus) but hearing and awareness remain undisturbed.

Sarah notes that because there's a general lack of awareness surrounding her condition, many people think it's funny until they actually see what happens. Usually, when an attack does happen, bystanders will get "really scared and panic" because they are so unprepared.

sleep attack narcolepsy

The response

Since posting her video online, the response has been overwhelming and, of course, the video has gone viral - it's now received over 850,000 views (and counting).

Sarah has also started a Reddit thread to answer the incoming stream of questions from the public about her illness.

Below are just some of the questions she's been asked:

Are there any triggers to an episode, or are they totally random?

Sarah: They are usually triggered by strong emotions- anger, fear, shock, laughter, anxiety. It's worse when I'm tired though.

Do you feel an episode about to come on so you can better prepare for it, (like lay down quickly) or is it just random, 110% instant lights out?

Sarah: It depends on how off guard the emotion that triggers it catches me. Most of the time I will feel it coming on. Laughter doesn't trigger me very often, but when it does, I don't usually fall asleep all the way- I just fall down and laugh myself stupid. Shock and fear usually catch me off guard and I'll collapse and pass out too. Things like anger and anxiety usually come on gradually, so an episode will come on gradually as well.

Do you enjoy sleeping at night? Or does your condition cause you to dislike sleeping all together?

Sarah: I really don't like to sleep anymore. I'm plagued by really horrible nightmares, and I feel like all of my time is being robbed from me by sleep. I can't remember the last time I was able to stay awake for 12 hours straight like most people do.

Are you permitted to operate a motor vehicle?

Sarah: I am, but I chose not to for over a year because it scared the fire out of me after I had a brief incident. I didn't get in a wreck. No one was hurt. I was able to pull over safely, but it was still crazy scary.

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What things do you wish you could do that your narcolepsy doesn't allow you to do?

Sarah: I miss performing. I was originally going to school for theatre and music before my diagnosis. Three days before my first opera was to open I cataplexied backstage and no one would help me stand up again. I was removed from the show and told that I was a safety hazard.

What's the most common misconception you encounter regarding narcolepsy?

Sarah: People think it's something funny to just laugh about. They never think about it being something serious that can actually interfere with my life. Or they think that I'm lucky because I "sleep all the time." My quality of sleep is actually really horrible.

Do you suffer with narcolepsy? What is the most frustrating thing about your condition? Tweet us @HuffPostLifestyle.