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.

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.

Absolutely! And the damage those misdiagnosis can do to the ego are pretty damaging for some of us. The people around us don’t correct those misconceptions. And like you say, even loved ones are under the delusion that we are just a bit tired or lazy.
I don’t expect my family to understand the reality, how can they. But it means I deal with it alone sadly which can weigh a ton some days.

i think a general common misconception about Narcolepsy, from those that actually know it exists, is 'it's' just about people feeling sleepy or feeling tired sometimes. That's the illness summed up; no more, no big thing, its a shame for those few people, it's not killing them etc etc.
Unless you can experience and relate to anything, you will never truly know how it feels. Thus the seriousness, patience or compassion can be missed or toned down. Until more people know all the facts about this disorder and the multiple other affects that Narcoleptics experience, it will never be viewed as much more than 'They can't help falling alseep'.and never taken that seriously.

@A MyNarcolepsyTeam Member, your right, the misconceptions are never correct and do cause irreversible damage to out psyche. For me, I've been trying so hard to get everything right at work. Yet, anytime something is wrong or missed, even though it may be easily fixed, I get pulled into a meeting to discuss why something was entered incorrectly or why ut was missed. The only answer I have is "I honestly can't recall what happened to cause the error. I have a sleepy brain, so when things interrupt me, I never regain my focus for the day. It leaves me feeling like a child being scolded for doing wrong all the time. I feel incapable of getting the job done, the way they need it dto be done. And this leaves me feeling ashamed!

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