When Insurance Says No: A Sarcoidosis Story About Unexpected Help

Chronic illness teaches you that control is often an illusion. Tests, insurance approvals, medications, and diagnoses can feel like they belong to systems far bigger than the person living inside the body.

For someone living with sarcoidosis and heart complications, routine medical tests are never really routine. They can determine whether the disease is quiet… or quietly returning.

But every once in a while something unexpected happens.

A phone call.

A decision made by someone behind the scenes.

A moment where the system that usually feels rigid suddenly bends in a human direction.

And sometimes those small moments remind you that living with chronic illness isn’t only about what the body loses… it’s also about what life quietly gives back.

Transcript

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I've learned that living with chronic illness means hearing the word no a lot. And every once in a while, life surprises you with a yes you never saw coming. Man. Hello, and welcome to Thoughts While Surviving Chronic Illness. I'm Tate. Some of you may be patients, caregivers, or even clinicians trying to understand what chronic illness actually feels like. Wherever you fall in that mix, you're welcome here. And if the voice sounds a little different, that's because chronic illness can wear out my own voice. So this AI voice helps me tell the story while the chef rests his vocal cord. Before we start, a quick note from the kitchen. I'm not a doctor, and nothing in this podcast should be taken as medical advice. This is simply one chef sharing how he lives with a body that doesn't always follow the rules. Alright, let's get into today's rambling. Today's rambling started with a phone call I didn't expect. I know sometimes I probably sound like a broken record. The guy who keeps saying he's lucky, blessed, grateful. I can practically hear people rolling their eyes through the internet. Here he goes again. But when I look back at the strange path my life has taken, it's hard for me to see it any other way. Because somehow, through everything, the good has always shown up eventually. Even when it took a while. And believe me, life has thrown its share of curveballs. Illness. Surgeries, tests, moments where doctors looked at me and said things that make your stomach drop into your shoes. But every time something difficult arrived, something good eventually followed. Not immediately, not always in obvious ways, but it showed up. Looking back, that pattern is impossible for me to ignore. Now I'm not what you'd call a religious person, but I am spiritual. And I've always believed something simple. We're only given as much as we can handle. Now, before anyone writes me angry letters, yes, I know life can throw things at people that feel impossible. I'm not pretending hardship is easy, or that illness is some kind of cosmic gift basket. Chronic illness is hard. Sometimes brutally hard. But when I step back and look at my own story, something interesting appears. The worst moments in my life often place me exactly where I needed to be, even when I didn't realize it at the time. And that brings me to this week. Because once again, life lined up one of those moments. It started with something very ordinary in the world of chronic illness. Tests. More tests. Living with sarcoidosis means doctors like to keep an eye on things. And by keep an eye on things, I mean scan every possible corner of your body occasionally to make sure the disease hasn't decided to throw a surprise party somewhere. Lungs. Heart. Sarkoidosis has a way of wandering around like an uninvited house guest. So my doctor wanted to run a PET scan. A pretty common imaging test when you're tracking inflammation and activity in diseases like this. Nothing unusual about that. Except for one small problem. Actually, two. The test requires two separate scans. Both of them work together. One scan without the other is like trying to cook a dish with half the ingredients. Technically possible, but mostly useless. Now, normally my insurance has been excellent. And when you live with chronic illness, that matters more than people realize. Insurance isn't just paperwork. It's oxygen tanks, heart monitors, specialists, emergency surgeries, life-saving devices. In my case, it's covered just about everything over the years. Every hospital stay. Every procedure. Every diagnostic test. Honestly, they've been pretty remarkable about it. So when my doctor ordered the PET scan, I assumed it would go the same way it always had. The request goes in, the approval comes back, and off we go. Except this time, the approval didn't come. Instead, the insurance company said they would only cover one of the two tests. Just one. And again, one without the other doesn't really help. It's like asking a chef to bake a cake, but refusing to pay for the oven. Sure, technically you have the ingredients. But nothing useful is going to happen. So my doctor tried. The office tried. Back and forth with the insurance company. Appeals. Clarifications. Medical justification. All the bureaucratic dance moves that come with modern medicine. And the answer stayed the same. No, they would pay for one test. Not both. Which meant effectively no tests at all. Now, if you live with chronic illness, this kind of thing becomes weirdly normal. You learn that medicine and insurance are two completely different universes. Doctors think in terms of health. Insurance companies think in terms of spreadsheets. And sometimes those two worlds collide. Hard. So eventually I shrugged and thought, well, that's that. No PET scan. Not ideal. But life moves on. You adjust. You keep cooking the meal with whatever ingredients are still in the pantry. That's one of the quiet lessons chronic illness teaches you. Adaptation. You learn to pivot. You learn to accept uncertainty. You learn to move forward even when the system stalls. Then the phone rang. It was the hospital. Specifically the nuclear medicine department, where the scan would have been done. And I assumed the call would just confirm what I already knew. No approval, sorry. Instead, the person on the phone said something that made me stop walking midstep. They told me the hospital had reviewed the situation. And they had decided to absorb the cost of the second test. They were just going to cover it. No charge. Just take care of it. I actually didn't know what to say. Which is rare for me. But in that moment, I was stunned. Because medical imaging like that isn't cheap. These tests can cost thousands of dollars. And yet, here was a department saying, we'll handle it. No argument. No paperwork battle. No complicated process. Just kindness. And that moment stuck with me. Because we hear a lot about the coldness of the healthcare system. The bureaucracy. The delays. The denials. The frustration. And those things are real. Anyone living with chronic illness knows that. But moments like this remind me of something important. Behind the system, there are still people, human beings making decisions. Doctors. Technicians. Administrators. Nurses. People who sometimes step outside the rules just long enough to help someone. Looking back, that phone call meant more than I realized at first. It wasn't just about a test. It was a reminder that even inside complicated systems, compassion still exists. And when you're living inside a body that constantly feels uncertain, those moments matter. A lot. Sometimes chronic illness feels like life is closing doors. Diagnosis. Medications. Side effects. It can start to feel like every path forward involves another obstacle. Another conversation. Another form. Another we'll see. But every now and then, a door opens. Quietly. Unexpectedly. Without a fight. And those are the moments that stay with you. Not because they solve everything, but because they remind you that the world hasn't completely forgotten how to be kind. As a chef, I've spent most of my life thinking about timing. Cooking is all about it. Too early, and a dish isn't ready. Too late and it's ruined. Perfect timing sits somewhere in the middle. And life sometimes feels the same way. Moments arrive exactly when they're needed. Not when we plan them, but when we need them. And that phone call felt like one of those moments. Because just when the system seemed to say no, someone quietly said yes. Here's the strange thing about living with a long-term illness. You become hyper-aware of the difficult parts, the symptoms, the appointments, the medical language that slowly becomes part of your everyday vocabulary. But if you're not careful, you can miss the other side of the story. The unexpected kindness. The nurses who remember your name. Those moments don't erase the hard parts, but they balance them. Just enough to keep you going. And that's the shareable truth that stayed with me this week. Chronic illness may take control of your body, but it also reveals the quiet kindness of people you might never have noticed otherwise. So, yes, I know I probably sound like a stuck record sometimes. Talking about gratitude, talking about blessings, talking about how things somehow work out. But when I look at my life honestly, it keeps happening. The hard moments arrive. And eventually, something good appears beside them. Not instead of them, but beside them. And sometimes that something good shows up as a phone call from a hospital department saying, We've got you. Living with chronic illness means navigating systems you never expected to learn so much about. Insurance, hospitals, tests, approvals, denials. But every once in a while, the system pauses long enough for a human moment to slip through. And that's one of the strange things about living with a chronic illness. On paper, it may be labeled rare, but when it shows up in your body, your lungs, or your heart, it stops feeling rare pretty quickly. Sarcoidosis is only rare until you're the one living with it. If this episode resonated with you, follow the podcast so you don't miss the next rambling. New episodes come out Tuesday morning and Friday evening. And if you think someone else might need to hear this, share the episode with them. Leaving a rating or review also helps other people living with chronic illness discover the show.