rare disease stories – Tate Basildon

What You Don’t See: A Chef’s Reflection on Living With Sarcoidosis

Living with sarcoidosis is like starring in a medical drama no one else can see—one where you look perfectly fine on the outside while your organs do the cha-cha backstage. Back in 2011, when all of this felt new and terrifying, I kept most of it to myself. Now, looking back from 2025, I can’t help but revisit how invisible everything looked… especially to everyone who insisted I “didn’t look sick.” There’s a lot more to the story, but you’ll have to come inside for the rest.

☀️☀️

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.