non24 culture is half the people in your life not understanding or caring to understand your disorder at all (big rant/vent)
the amount of people who say "have you tried sleeping earlier?" "you should try to go to sleep earlier its not healthy" "well if you didn't stay up so late..." etc. is my biggest pet peeve, yes actually, i've been trying to sleep earlier for over a decade but as it turns out it just doesnt work like that! shocker! who knew a sleep disorder would make your sleep disordered?
people who try to say their struggles with sleep are just as bad just because they stay up on their phone all night, "yeah haha i went to sleep at 2am too" did you spend the 3 hours beforehand staring into the darkness with the lights off, tossing and turning, trying anything to get your brain to shut off? i don't mind other disordered people relating to me, im not some oppression olympics athlete, but i hate when people who's entire problem is poor sleep hygiene try to act as is my life ruining disorder is the exact same
people who think you're asocial/avoiding hangouts on purpose when you just can't be awake for them right now, you have no idea how much i'd love to go to that picnic but unless you want to babysit a sleep deprived zombie the entire time i will not be going
adding onto that, people who think just because you can break out of the cycle for one obligation, you should do it every single time they want you to - i had to be awake at 8am for my disability appointment because if i wasn't i'd be homeless, i'm not getting less than half an hour of sleep, taking unregulated stimulants, and ruining the rest of my week with fatigue just because you want to go for a fancy meal tomorrow
people who demonize the medication/methods you use to self-regulate; i take narcolepsy medication for important appointments as mentioned above - it wasnt prescribed to me, i order it from an overseas pharmacy, but it's what works in a pinch to keep me from collapsing (caffeine doesn't do anything to me) - quite a few people have treated me like an addict just for saying i take stimulants occasionally to treat my disorder
and doctors... god the way doctors treat the disorder is asinine, i got scheduled for a polysomnograph on a night where the doctors KNEW that the time they wanted me to sleep would align almost exactly with the time i'd be awake (communicated this multiple times, only reason i didnt object is because i made the mistake of assuming they had a workaround) and got mad at me when they inevitably got poor results out of it
i sincerely wouldnt wish non24 on anyone, i can't work, i can barely have a social life, im doomed to spend half of my life, for the rest of my life, completely isolated from everyone else and because i'm a rare sighted case there's barely any treatment options
Holy shit. Yeah the doctors sound awful. Everything does.
Hopefully one day there will be more research done for treatment.
Be careful taking the medicine, but if it helps you manage, then keep taking it. Wishing you the best.
