living with xlp — the daily shitshow nobody talks about

living with x-linked dominant erythropoietic protoporphyria (yeah, try saying that five times fast) is a daily gamble — and spoiler alert: it’s usually a crapshoot. like where crap shoots out of me. some days i wake up, pee, poop, check my emails, eat some cold leftovers like a boss. no pain, no nausea, no drama. i jump straight into writing with my caffeine on standby. those days feel like winning the lottery because, honestly, most days don’t.

other days? it’s like my body gets hijacked by the devil’s own rollercoaster. a random stressor or a dumb medication change triggers an attack that slams me into pain city — nausea, brain fog, all the neurological weirdness included. productivity? forget it. i’m lucky if i can just manage the pain, call my doc, and lean on my people without losing my shit.

the worst part: people think i’m lying or exaggerating because this condition is rare and invisible. screw that noise. i’m not here to explain myself to skeptics. i survive in the tiny victories — a pain-free hour, getting shit done, or even just chilling in silence without wanting to die. that’s the real deal.

living with xlp isn’t about pretending you’re fine. it’s about fighting like hell every day — and refusing to let the bullshit win.