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Explaining Narcolepsy to Others

How do you explain narcolepsy to others in your life? Did you share your diagnosis right away or wait?

  1. I told my hubby right when I got home. Wish I hadn't. He did not believe the diagnosis and accused me of faking on the tests., like you can do that. I often feel very unsupported, misunderstood and alone. I have no one to talk to about so I am struggling to understand it myself. I do find this news letter very helpful and I am grateful for it. I have narcolepsy with cataplexis.

    1. I wish you had more support from your husband, . I hope he comes around over time. Do you think he might come with you to a doctor's appointment sometimes? Maybe hearing your diagnosis directly from a medical professional will help. Have you been diagnosed long? Are you on a good treatment plan? Please know we are here for you whenever you need extra support or someplace safe to vent. Best wishes. - Lori (Team Member)

  2. I do typically just say it's EDS and that I struggle to wake up, unless the other person shows more interest in it.
    With "persons of authority" (profs/admins/etc) I find it more difficult.
    I have N2 - since it's cause(s) are not known, I can't really classify it. Like, I can't even say "it's an autoimmune disease", since atm research says it's not.
    Additionally, I need to translate what I read about it, which tends to be difficult once it goes into some detail.

    1. It is such a complicated disease, , and an alien concept to so many people. I can see why it is hard to explain. Keep in mind that it is a legal disability though. Even if your professors or administrators don't understand it, they do have to make reasonable accomodations if you need them. Thinking of you. - Lori (Team Member)

  3. The pie shaped infographic on this website that compares 24 hours of "sleep" in visual format. http://www.falling-asleep.com/advocacy-tools/. It's worked the best with people for me. As well as MarkDFW description above.

    1. Hi , thanks for sharing this! An infographic is a great way to help people understand narcolepsy better by seeing things visually. Thank you, Allison (Team Member)

    2. Wow this is an awesome visual aid to help explain Narcolepsy! I know from experience how difficult it can be to get people to understand what living with Narcolepsy is like. It can be exhausting, emotionally, when people just don't get it. There's only so much we can do to help that, unfortunately. But this infographic is a great tool! Thanks so much for sharing! Warmly, Tatiana (Narcolepsy.sleep-disorders.net Team Member)

  4. A good thing I can state about Narcolepsy is that when I explained to my wife about my situation she understood from day 1 and never judged me and I love and respect her for that

    1. I am so glad to hear that you have a supportive partner that is understanding and accepting of your condition. This is beautiful and can make ALL the difference when it comes to living with Narcolepsy. Just having another person on your team is so important, especially when that person is your partner and is there to support you 24/7. I am curious, had she known what Narcolepsy was before she met you? Or did she have experience with some other chronic illness somehow? Or did you just get really lucky with a really empathetic lady? I'd love to hear more about your story! Unfortunately I haven't had the greatest luck with finding a partner that accepts and understands my Narcolepsy symptoms and is supportive and helpful - but I do have many friends that are! I discuss this in my article here: https://narcolepsy.sleep-disorders.net/living/dating-tips Thanks for sharing! Warmly, Tatiana (narcolepsy.sleep-disorders.net Team Member)

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