The High Price of Staying Alive: Chronic Illness, Insurance, and America’s Health Care Circus

Living with chronic illness is… a lot. Some days, it’s like juggling chainsaws—blindfolded—while someone keeps adding new chainsaws labeled “specialist,” “lab work,” and “co-pay.” Between the appointments, tests, and the constant “How are you feeling today?” chorus, life becomes this weird blur of pain management and paperwork. You don’t so much live with illness as negotiate with it daily.

And while I’ve gotten used to the physical part—the fatigue, the breathlessness, the occasional near-death hospital adventure—the financial side is a beast all its own. Because in America, getting sick isn’t just scary. It’s expensive.

Now, I’m one of the lucky ones. I have what most people would call “good” insurance—an employer plan that makes my co-pays feel almost reasonable: $15 for my GP, $35 for a specialist, $100 if I end up in the ER (which, let’s be real, happens more than I’d like). My prescriptions? Ten bucks each. Not bad, right?

Except… those numbers hide the real story.

My most recent AICD replacement (that’s a heart device, for those playing along) ran a cool $280,000. My lung collapses in 2020 and 2021? Those were $11,000 per day before they wheeled me into surgery. It’s mind-boggling—and a little nauseating—how much it costs just to keep breathing in this country.

Yes, insurance covered almost everything. But that coverage isn’t free. My monthly premiums could make a mortgage payment blush, and every year they climb higher. As I inch closer to retirement age, I’ve realized something terrifying: I may never be able to stop working. Not because I want to keep chasing dreams, but because if I don’t, I can’t afford to stay alive.

We don’t have a National Health Service here. The closest we ever got was the Affordable Care Act, and even that’s been turned into a political punching bag. If the current powers-that-be succeed in gutting it, my premiums could double—and my employer might decide they’ve had enough of footing the bill. Then what? Do I pay for my meds, or do I eat?

It’s easy to rage about it, to play the blame game, to point fingers at the suits in charge. But honestly? I don’t have the energy for that anymore. Chronic illness already demands everything I’ve got. I can’t afford to give it my peace of mind, too.

So, I focus on what I can control: gratitude, humor, and the small blessings that make the hard days survivable. I’m lucky—blessed, really—to have decent coverage and a partner who’s been through every scary night and insurance phone call with me. But my heart aches (literally and figuratively) for the millions of Americans who aren’t so lucky. The people choosing between groceries and glucose monitors. The ones praying their next hospital bill doesn’t cost them their home.

Because health care shouldn’t be a privilege. It should be a human right.

Until that day comes, I’ll keep writing, cooking, healing, and surviving—one absurdly overpriced medical invoice at a time.

Have you struggled with the financial side of chronic illness or health insurance? Share your story in the comments—or subscribe below to join this community of survivors, storytellers, and spoonies trying to make sense of it all.