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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)

  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

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