Private Chef, Writer & Podcaster
A quick trip to the store turned into an unexpected memory about life with chronic illness, oxygen tanks, and the hilariously awkward way two grown men with invisible diseases failed to communicate. If you’ve ever lived with sarcoidosis, heart failure, or just the chaos of being human, this tiny moment might hit home.
Living with chronic illness means juggling more than fatigue and pain—it’s the nonstop cost of staying alive. From $280,000 heart surgeries to sky-high insurance premiums, surviving in America’s healthcare system feels like a full-time job. Here’s what it’s really like to navigate life, love, and medical debt when your body—and the system—won’t cut you a break.
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.
Even before summer hits, my body—and soul—longs for sunlight and salt air. For those living with chronic illness, like sarcoidosis, the dream of a beach getaway isn’t just about fun—it’s about healing, freedom, and survival.
What’s the true cost of staying alive with chronic illness? In Lightning Flowers, Katherine E. Standefer explores the emotional, financial, and global toll of her implanted defibrillator with raw honesty and heart. This book review dives into the memoir’s bold take on medical trauma, ethical questions, and what it means to live with an invisible illness.
Tate Basildon 