How to deal with people who seemingly want narcolepsy?

Advice Request

I was diagnosed at the beginning of the year and have been going through the understanding, grieving, processing, all emotions regarding N since. Not too many people know of my diagnosis and most who do are super respectful, interested in learning more, how they can help, etc. which I love and love that my friends are like this.

However… there are a few acquaintances who know of my diagnosis and convinced they have narcolepsy because they are also tired. I’ve encouraged one to go to a sleep specialist consult, but she just refuses to; anytime it turns into an “I’m so tired, you would never get it, I have to nap constantly” competition conversation, I retreat and shift. Smile & wave, boys. Ya know? I can only recommend seeking a medical consultation so many times before it’s exhausting.

One acquaintance did get a sleep study and had normal results; she is convinced she has narcolepsy regardless despite her doctor confirming she does not have N or IH. I sympathize, it’s difficult to not have answers, but talk with your dr about other issues that could be causing your symptoms… there are so many things that can make you tired! Recently, she asked me if I was familiar with Xywav, which I take. She is trying to have her psychiatrist prescribe it for her because she heard it will help her sleep longer/deeper and that’s what she needs, asking me what I had to say to get it prescribed (nothing!!!!). I tried to explain how Xywav works, and told her to talk to a sleep specialist again if she is concerned and follow their guidance. The pushback and insinuation that I personally was gate keeping Xywav was sort of nuts…!

And let me preface - I GET it. It sucks not knowing what’s going on and wanting to find something to help. I am so happy to answer any and all questions regarding my diagnosis and journey and whatnot, and eagerly share resources/references when I can. But I am not sure how to handle the “I feel that way too, it must be narcolepsy!” responses. They are becoming more frequent.

Posted Oct 1, 2025, 9:04 PM UTC

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