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How Can Family & Friends Support You During the Holidays?

How can loved ones make holiday gatherings more comfortable and supportive for someone with narcolepsy? What strategies and tips do you have for communicating your needs with family and friends?

  1. Yes, for the most part, I feel as though my family and friends do try to understand.

    However; because they don't live with narcolepsy, I find I often have to re-explain symptoms and make sure to bring up any accomodations I will need far in advance and may need to gently remind them.

    I'm lucky that those around me are understanding and will try to accommodate both me and my partner, since we are both narcoleptic!

    1. I am glad you appreciate their efforts to understand, . How interesting that you are both narcoleptic. Did you know that when you met? I imagine it must be helpful to have a partner who really gets it. - Lori (Team Member)

  2. 1. Wear a well-fitting N95 everywhere (including public outdoors) for at least two weeks before we gather. Loss of orexin is largely caused by neuroimmune disorder, and SARS-CoV will strongly affect anyone with narcolepsy. Keep us all safe, or we can't see each other!

    2. Make sure anywhere we gather has a separate room (preferably dark & quiet but obviously we will sleep in any conditions) with a comfortable couch or bed we may nap in; even medicated, we are prone to sleep attacks.

    3. Please don't gossip about or poke fun at how tired we are especially if we fall asleep.

    4. Understand that if we experience cataplexy, it's because we're having a great time!! Strong positive emotions are a big trigger for these attacks.

    1. This is such a great list, . Thank you for sharing. Do you feel like family and friends understand or at least try to understand? Best wishes. - Lori (Team Member)

    2. These are great tips for friends and family of people with narcolepsy! Having a safe place for us to nap is especially helpful. I can't say how many times I've had to leave get-togethers because I knew I was going to fall asleep in front of others. They tend to talk about me as if I'm not in the room when this happens and I really dislike that. Poking fun at other peoples' disability is awful and it happens too often, especially with invisible disabilities like narcolepsy. And yes, cataplexy is a sign that we are overwhelmed with emotion, sometimes positive! I tend to have cataplexy around other people, not so much when I am alone, because being around people that make me laugh is a huge cataplexy trigger. I love to laugh, though I try to hold it in sometimes it just doesn't work. Thanks so much for sharing these tips! Happy holidays to you and yours! They better treat you right! Warmly, Tatiana ( Team Member)

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