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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 explain when issues happen, if I collapse? I explain situation - most difficult of all is - I fall asleep - no one understands why. I've lived with this 30+ yrs + issues have got worse - I 'd love to have loving relationship - where do I find that

    1. Hi . It must be very frustrating when no one understands why you fall asleep. Have you considered getting a medical bracelet or carrying cards that give a brief explanation of narcolepsy? Some people find that takes less energy than explaining it verbally.
      You are not alone in finding dating difficult. Here is an article about dating and narcolespy that you might find interesting: https://narcolepsy.sleep-disorders.net/living/dating-difficult. Wishing you the best. - Lori (Team Member)

  2. Right away

    1. Hi . Did they react with support? So many people have a powerful sense of validation when they are diagnosed. Was that the case for you? Warm wishes. - Lori (Team Member)

  3. I relate well with above explanation.
    Imagine being misunderstood at home, office and in class.

    1. I can only imagine how hard it must be to explain your illness and justify your symptoms so often. I hope those closest to you are supportive. Thinking of you. - Lori (Team Member)

  4. It affects my REM stage and I'm not getting in that stage to where a person s mind shuts down/off

    1. That's a good explanation, . Most people seem to be familiar with REM sleep. Thanks for chiming in! - Lori (Team Member)

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