What Do You Wish People Knew About Narcolepsy?
I wish people understood that we are not experiencing restorative sleep. I get the "must be nice" comment a lot around my narcolepsy and napping. The assumption that we just peacefully fall in and out of deep, restful, sleep has been a tricky one to navigate. When I would try to explain my reality (and the actual fear I have now around sleep) I would get a lot of disinterested looks. haha. So now I just smile and move on.
Having N1 has definitely made me more aware and empathetic of other invisible disabilities I may have misjudged or downplayed in the past.I'm glad your awareness is greater, but I wish you didn't have to suffer from that kind of ignorance yourself,
. I think people find it hard to empathize with the symptoms and impact of narcolepsy because they simply can't fathom it. To them, sleep is sleep. We have good nights and bad nights, but bad nights can be overcome. Do the people closest to you seem to understand? Best wishes. - Lori (Team Member) I'm glad your awareness is greater, but I wish you didn't have to suffer from that kind of ignorance yourself,
. I think people find it hard to empathize with the symptoms and impact of narcolepsy because they simply can't fathom it. To them, sleep is sleep. We have good nights and bad nights, but bad nights can be overcome. Do the people closest to you seem to understand? Best wishes. - Lori (Team Member)
That it is a real condition and I'm not just tired. It's a Neurological condition as well and it does exist many people suffer from it. There are more things evolved with it besides just sleep as well.
We hear you. More awareness would be so impactful. Feel free to share any of our articles if ever you feel in might help. Warm wishes. - Lori (Team Member)
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 isAs 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!
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)
I am an LPN and I cant count the amount of times that I have fallen asleep while standing at my med cart. I will be writing and before I know it, it feels like im still writing but the ending of what im writing trails off into gibberish. Typically I have to go outside to wake myself up which the bosses dont understand and get mad at me taking an extra break or ill have to run out to my car and grab my modafinil and again, they consider that an extra break and give me a tough time.
