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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. 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 describe it as this: Imagine not sleeping at all for 48 hours or so, and when you finally get to sleep, you only get to sleep 3 hours a night from then on. You will now be in a very sleepy state, but as time goes on a few more days, THEN you are in MY world, because the accumulation has also put you in a state of incredible fatigue. Because you feel this way, you HAVE to cut some corners. You start avoiding some things. The difficult things you can't avoid, are often repeatedly interrupted by a voice screaming in your head that you can't do this. You can't process this GO AWAY, GO AWAY. I just want to sleep. LEAVE ME ALONE.

      It sounds strange, but because I have been so sleep deprived for so long, I can probably stay awake longer than anyone you know. It's just more of the same, because I can go without sleep and feel like crap for a good while, because I have been doing if for so many years.

      When I wake up, I feel like I have just been exhumed. When I am around somebody who is bright and cheery after I wake up, I feel like for just an instant, that it would be ok with me if they would get hit by lightning.

      You get through another day. Tomorrow is bound to be better, right ? It won't be. You know it will be a lot like today.

      1. – thank you for sharing. I think that's a really good description and would make sense to a lot of people who might not be able to understand since they don't personally experience narcolepsy. Thank you again for sharing! Best, Minel (Team Member)

    2. 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.

        1. I agree 100%. We will get thru this. Just stay positive.

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