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Real members of MyNarcolepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

What's A Common Misconception About Narcolepsy?

A MyNarcolepsyTeam Member asked a question 💭
posted May 20
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A MyNarcolepsyTeam Member

What I find even more frustrating is when all your health care providers, including your sleep specialist only have "book knowledge," and no idea what it's really like to live with it.

posted May 20
A MyNarcolepsyTeam Member

People say,
" just sleep enough at night. You'll be fine"

"You must be on drugs, nodding off like that"

"You're just making excuses, so you don't have to work as much."

"Narcolepsy is a made up thing. Get over it."

"You seem ok. It's not a real disability"

😪

My teen years were horrible. Now people understand a bit more...but there's a long way to go.

posted May 20
A MyNarcolepsyTeam Member

That narcolepsy is rare. I absolutely do not believe it is rare. I believe it is RARELY diagnosed.

posted May 21
A MyNarcolepsyTeam Member

Narcolepsy will require much more research for the public to understand this as a very serious problem. It is many times dismissed because a significant amount of the public has not heard of narcolepsy along with cataplexy. George W.

posted May 20
A MyNarcolepsyTeam Member

I said if narcolepsy came with a scarlet letter, people would be empathetic towards those that suffer. Each of you have pointed out very real misconceptions! I believe they are all very valid. It's less rare than they say it is because it is always misdiagnosed at first and it's a long hard fight for any one to receive a proper diagnosis in order to receive treatment! I'm not lazy, I'm exhausted from fragmented sleep, plagued with vivid dreams and bouts of insomnia. I encourage folk to stay awake for 3 straight days and when their brain gets foggy from sleep deprivation... think of me because that is the zone I live in.

posted June 13 (edited)

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