Explaining Narcolepsy to Others
How do you explain narcolepsy to others in your life? Did you share your diagnosis right away or wait?
I don't. I just say 'health reasons' and insist that we not talk about it because it's none of their business. Then the experts in the crowd say "why don't you see a doctor?", and I reply "I have multiple doctors and highly involved tests over many years on this, but I'll tell them you know how to fix it." That usually reminds them they have no clue.
It depends on the relationship
I didn't tell people for years and hated when my friends and/or family volunteered to tell people.
I can see why you found that upseting,
. It should be your decision whether to share your diagnosis and who you share that with. - Lori (Team Member)
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
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)
