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Telling people you have narcolepsy

I’m not embarrassed about having narcolepsy and have come to terms with it. But I also don’t want it to hold me back in my career and other areas of life. So I try to hide it from everyone apart from close family. This is exhausting on its own :/ but I’m just not ready to release it to the world.

Can anyone tell me their experiences of informing people? Positive or negative.

  1. Whether I tell someone or not they still judge me as being on drugs. They don’t care what it is or does, it’s not a physical disability they can see so they don’t believe or just don’t care! I now try very hard to hide it unless I know someone well. There are also those who think it’s a joke and they make fun of it. It’s seriously hard to hide cataplexy!

    1. Oh, . I wish you didn't have to contend with that kind of ignorance. Narcolepsy is no joke. Please know we are here for you whenever you need us. Gentle hugs. - Lori (Team Member)

    2. I am so sorry this happens to you. I know exactly what you mean, unfortunately. I've had a similar experience, I discuss it in this article: You aren't alone in this! Warmly, Tatiana ( Team member)

  2. I tend to be embarrassed as some others mentioned. I also worry about saying something at work but also not saying something. My last two employers have been understanding. One even researched it more so that they could better know what to offer me for Accomodations.

    1. I am glad to hear that you've had understanding employers when it comes to your narcolepsy! What are some of the workplace accommodations that have been most helpful for you? Warmest regards, Tatiana ( Team Member)

  3. I do not want to say that I was ashamed, but I feared discrimination from employers or that professors would think I was just using it as an excuse. Now I tell anyone who has to be around me for more than a few days. I am very open about it and welcome questions. At work, I wait until I am hired and present my doctor's statement of my diagnosis to my supervisor just so it can be on file if anyone has an issue with me falling asleep at work. My current boss kind of rubbed me the wrong way when I told her, as if it was a huge burden on her somehow and inquired why I didn't mention it during the hiring process? Nice try, wrong guy (gal)! I do not have to, and I am only telling you now to save my behind. Turns out there is another narcoleptic in this agency and that has created some kind of prejudice against Narcoleptics.
    Regardless of people's responses, some are really intrigued, some could care less, I am a lot more upfront with it than I was previously.

    1. How awesome that you are able to be so open and honest about your narcolepsy, . It's a disease like any other and you have rights to all the same workplace protections. You were smart though to hold off until after you were hired, especially since there have been some negative experiences related to narcolepsy within the company. I hope people are learning from you and that the awareness you are spreading paves the way for others. Wishing you the best. - Lori (Team Member)

  4. There's a lot to say on this matter. I remember being really embarrassed for a long time and not knowing how to explain this to people. I was worried my professors and bosses would think I was less capable or lazy because I had this disorder. I was lucky I had good friends in undergrad who would cover for me and help explain myself whenever I was struggling to stay awake in a class. Finally my senior year I just approached a professor after one class and explained my condition. She was so nice and helpful about it! I stopped stressing about what she was thinking whenever I would have sleep attacks and microsleeps and was able to do really well in her class. Since they, I tell all my colleagues and bosses. I'd rather them know about my disability than think I am lazy or insane. *Not that people actually assume those things, but my anxiety will lead me to assuming they assume those things* People with enough sense will accept you at your word, even if they don't understand your condition entirely. We often consider narcolepsy to be an invisible illness, but anyone who spends a considerable amount of time around you or cares enough to ask questions, will see the toll it takes on your daily life. Plus, then there is a freedom to attend to your health as you see fit. No one is concerned when I'm passed out at my desk. My boss even lets me leave early and work from home in the afternoon so I can get a nap in and I'm not driving when I'm tired late in the day. Advocate for yourself! Honestly, most people are super impressed with what I've accomplished in my career, in spite of this disorder. You don't owe anyone an explanation or answers. You're not a sideshow. But create a narrative that helps you in your career and draw boundaries around it that make you feel safe and seen. Hope this helps!!! It's never easy, but it can be better. Good luck, you deserve peace of mind and a normally regulated sleep/wake cycle! But, we can all settle for peace until there is a cure lololol

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