I Lived What 95% Don’t—And I’m Telling the Story
- maryrburrell
- Jun 17
- 3 min read
How surviving fibrosing mediastinitis, a rare disease no one believed, changed everything. My first dance with death started in 1987. I was young too young to be in hospital rooms where doctors whispered in corners and avoided eye contact. Too young to be told something was growing in my chest, squeezing the life out of me.
They called it fibrosing mediastinitis. I didn’t know what that meant. All I knew was I could barely breathe and no one could tell me why.
They said it was rare.They said it was serious.They said, “Mrs. Burrell, you are dying—and we don’t know why.”
🫁 I Was Suffocating, Slowly
This disease was like a silent intruder, turning the space behind my breastbone into a war zone. Scar tissue started wrapping itself around my pulmonary artery like a snake. With each passing month, breathing got harder and harder.
Breathing should be easy but for me, every breath felt like a fight.
You know how when you get a cut, your body makes a scab and then scar tissue to heal it? With fibrosing mediastinitis, that process went haywire. My body made too much scar tissue in the wrong place. It started growing in and around a major blood vessel that sends blood from the heart to the lungs. That squeeze made it harder for oxygen to reach my lungs and that’s why every inhale felt like a struggle.
The scary part is doctors still don’t really know why it happens. Some think it’s linked to a tiny fungus that I might’ve inhaled a years before. But most of the time, it’s just a mystery. It’s not contagious. I didn’t do anything wrong. It just… happened.
💔 That Year Changed Me
The doctors were confused and many didn’t believe me. They blamed anxiety. They told me it was “in my head.”
But I knew something was wrong.I didn’t need a medical degree to know I was in real danger.
There were moments I wasn’t sure I’d make it. Times I just wanted the pain to stop. But somehow, I kept going.
🧍🏽♀️ I Walked Out of That Chapter Different
I don’t talk about 1987 often. But it was the year I learned what it really means to be a patient, especially when no one believes you. I wasn’t just fighting a rare disease. I was fighting to be taken seriously. To be seen as more than a chart. More than a “maybe it’s anxiety” diagnosis. I was a person in pain, and the system kept telling me it was all in my head. That year taught me how dangerous it is when doctors doubt instead of listen. And how much strength it takes to speak up even when your voice is the only one saying, “Something’s not right.”
I spent a lot of time in the hospital that year. And I realized something: Life is fragile. But choosing to keep going? That’s powerful.
🔥 The Truth?
Most people have never heard of fibrosing mediastinitis. It’s still considered rare and in 1987, it was even more of a mystery.
They told me 95% of people die within a year.Yep, that’s what I was told. Let that sink in.
There was no Google. No Facebook groups. Just fear, prayer, and a whole lot of waiting around for answers that never came.
Even now, there’s no cure. Just ways to manage it. It’s like trying to patch up a wound that keeps tearing open.
But here’s the thing that diagnosis didn’t break me.It helped to build the advocate I was always meant to be.
💬 Still with me?
Maybe you’re dealing with something rare. Maybe your story’s just getting started, or maybe you’re smack in the middle of a chapter you never saw coming.
Wherever you’re at… please hear this:You’re not alone. You never were.
✍️ Want more of the real, unfiltered stories folks don’t talk about in healthcare?
👇 Drop a comment. Share your story. Or visit maryburrell.com to connect.
Where we speak from the heart, for the heart. 💗
Comments