A reader from Europe recently scolded me about the “slice-and-dice” American medical system—but as someone living with sarcoidosis, heart failure, and a knack for collecting diagnoses like airline miles, aggressive treatment is the reason I’m still breathing. Here’s what really happened, why “wait and see” nearly destroyed someone else’s life, and why I’ll take over-tested over overlooked any day.
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.
