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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. Hello Tara, I also told close friends and family members about my Narcolepsy at first. It was kinda hard not to since my cataplexy was so severe and I'm a big laugher. Laughter is my most common cataplexy trigger, unfortunately. It can be scary to lose control of my body when I have cataplexy attacks and unable to move or speak. I usually explain to those around me out of necessity so they don't start calling 911 when I suddenly collapse, unable to move or speak! Thank you for sharing about your condition and how you deal with it. Best regards, Tatiana ( Team Member)

    1. I find it difficult explaining what narcolepsy is to people because so many people that I come to talk about it have a lot of misconceptions about it and are heavily influenced by the comical portrayal of it in the media. I try to explain how it is so much more than ‘just falling asleep’ which I have found is what most people tend to think.
      I waited before telling anyone outside of my close family and friends but now, if the opportunity arises, I tell most people.

    2. For me personally, I told close friends and family members at first. For a while I did not have a lot of knowledge of narcolepsy so I just would tell people that it was easier to look it up online than me to tell them just because I had no easy way to explain it. My first year of being diagnosed, I did some research and found out more about narcolepsy and found some amazing communities. In August or September 2020, I shared a long post on one of my social media pages. I announced I have narcolepsy and that I had it for a long time before I was diagnosed and a little about what narcolepsy is.

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