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What it’s really like to live with narcolepsy

Narcolepsy is often a misunderstood punchline, but YouTuber Sarah Elizabeth is helping to turn the stereotype around.


Rae Votta


Posted on Oct 20, 2014   Updated on May 30, 2021, 9:17 am CDT

Narcolepsy is often a misunderstood punchline, but one YouTuber is helping combat that stereotype by turning a serendipitous moment into a teaching tool.

Sarah Elizabeth, who has narcolepsy with cataplexy—sudden muscle weakness and collapse—accidentally caught a narcoleptic episode on camera while she was filming an instructional dance video. She decided to upload it to her channel to show what living with a condition where she can fall into sleep at any given moment is really like, complete with helpful subtitles to explain the different stages of her experience.

“It can be very frustrating to try to explain what it’s like to people who have never seen narcolepsy in real life, and how much of a struggle it can be,” she writes in the video description. “Most people think that it’s funny until they see what actually happens, or they are completely unprepared and get really scared and panic. I filmed this by accident, and it was really weird to go back and watch later from an outside perspective.”

Elizabeth is sharing the video not only as an educational tool for curious bystanders who want to better understand what the disease looks like in action, but also to help other potential sufferers to know their own warning signs. The video ends with her urging potential sufferers to call their doctors if they suspect they have the condition. So far it’s crossed the 500,000-view threshold—it’s reaching the world, like Elizabeth intended.

Screengrab via Sarah Elizabeth/YouTube | Remix by Jason Reed

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*First Published: Oct 20, 2014, 9:57 am CDT