How I Became a Medical Mystery (Or: Why My Doctor Thinks I’m Immortal)

A reader wrote to me with a blunt question: how the hell am I still alive and semi functional with sarcoidosis, heart failure, and a heart that occasionally tries to be creative with rhythm Just between us the answer is far more chaotic and heartfelt than any clinical chart will ever show Sarcoidosis taught me to take every prognosis with salt and faith and maybe a dash of rebellion

Why I Walked Away From Support Groups (And Found My Voice Instead)

Living with sarcoidosis is already its own exhausting full-time job, so the idea of a support group sounded…promising. Or at least not disastrous. But back in the early 2010s, when my lungs and heart were misbehaving like rebellious teenagers, the search for “people like me” turned into something far stranger than comforting. I won’t spoil the whole story here, but let’s just say it involved Christmas ornaments, long train rides, and me realizing the person I actually needed to find was somewhere else entirely. Maybe someone like you.