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What Do You Wish People Knew About Narcolepsy?

  1. It is not by itself considered a disability.
    Yet 1 definition stated that narcolepsy is a disabling condition marked by excessive daytime sleepiness and cataplexy.

    If that’s not a disability nothing is

    1. As a nurse-being in a profession that works 24/7- it is really hard to find a job that will allow me to work days- per Dr's orders-as to keep me on a strict sleep schedule-when Narcolepsy is not considered a disability. Nurses are allowed to work day shifts by seniority not by health conditions. So good luck- and if you fall asleep in shift=fired!

      1. I went on disability after my neurologist recommended it. Was approved in 3 weeks time . I was honest with my employer when I worked. Problem was with other employees who didn't understand when I dozed off and would try to wake me or give advice such as "get some fresh air" or "get up and walk around".

      2. That lack of empathy and understanding must have been so disheartening, . I wish you had been able to continue working, but I am glad you were approved so quickly for disability. Wishing you the very best. - Lori (Team Member)

    2. I wish some people knew what it feels like to have it. Just for a day or two 😂.



      1. That would sure improve the empathy factor, wouldn't it?! Wishing you the best. - Lori (Team Member)

    3. I wish people took the time to understand it better instead of making jokes and not taking it seriously.

      1. Thanks for sharing that, yes, we totally get that. There are so many misconceptions due to how narcolepsy has been portrayed by movies and tv shows. Warmly, Kristin (Team Member)

      2. Yes, that's really one of the most frustrating things isn't it! As Kristin said, the movies and TV shows can perpetuate this idea that narcolepsy is a joke. I think that the more we talk about it, the more we have an impact on this kind of thing changing. Luckily these kind of ableist portrayals are becoming less acceptable, although there are still ways to go with the media! Thanks for sharing, Best Wishes, Lauren (Team Member)

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