When Your Body’s Screaming and No One’s Listening

How a Rare, Overlooked Disease Nearly Took My Life Before My Heart Journey Even Began. Most people have never heard of fibrosing mediastinitis.I wish I could say the same.

It’s rare. It’s idiopathic—meaning doctors still don’t know what causes it.But I do know this: it nearly stole my life before I ever had the chance to face the rest of my health journey.

This was long before I heard the words heart failure or hospice.Before tricuspid valve disease had a name.Fibrosing mediastinitis was the first storm.

And it hit hard.

The Diagnosis I Didn’t See Coming

It started with symptoms you could easily brush off: constant fatigue, shortness of breath, bloating, and a nagging sense that something was wrong.Doctors suggested allergies, asthma, or stress.But deep down, I knew it was more.

As weeks turned into months, my breathing grew harder. My chest felt heavy, like something was pressing down on me. Dizziness came in waves, swelling spread through my body.

I went back to the doctor again and again—still no answers.

Then came the moment I’ll never forget.A doctor asked me to jog in place. When I caught my reflection in the stainless-steel paper towel dispenser, my lips were blue.Still, they said it was “anxiety” and “all in my head.”No tests. No scans. Just dismissal.

I left feeling broken—wondering if I was losing my mind.

But I wasn’t.

Thirty minutes later, I was in the ER at the same hospital. This time, a flood of tests finally revealed something serious.

That’s when I heard the words no one ever wants to hear:“Mrs. Burrell, you’re dying—and we don’t know why.”

Even then, I knew I had to fight for myself. I asked to be transferred—I didn’t feel safe where I was.

They moved me to Washington Hospital, where I stayed for a week. The diagnosis finally came: fibrosing mediastinitis.It was an answer—but it brought new fears.

Washington Hospital couldn’t treat it. I was sent to Stanford Hospital in Palo Alto, where I later underwent open-heart surgery.

What Is Fibrosing Mediastinitis?

Fibrosing mediastinitis is a rare disorder where thick scar-like tissue builds up in the mediastinum—the space between your heart and lungs.

This space holds major blood vessels, your windpipe, and other organs that keep you alive.When that space fills with hardened tissue, it can crush everything around it—blood flow, airways, even the heart itself.

In my case, it was blocking blood flow in my pulmonary artery.

Living with a Disease No One Understands

This condition doesn’t just attack your body—it plays with your mind.

Because you don’t always look sick, people assume you’re fine.But inside, your body is fighting for every breath.

And because it’s so rare, many doctors don’t know how to treat it. You get misdiagnosed. Overlooked. Told it’s all in your head.

There were days I couldn’t get out of bed.Nights I lay awake, struggling to breathe—trying to stay calm while feeling like I was drowning in my own chest.

What I Want You to Know

💜 You are not your diagnosis.💜 You have the right to ask questions, push for tests, and stand up for yourself.💜 Just because an illness is invisible doesn’t mean it’s imaginary.💜 Living with a rare disease can feel lonely—but you are not alone.

This road has been long. But I’m still here.Still standing. Still speaking from the heart—for the heart.

If this part of my story resonates with you, I invite you to share it.Because raising awareness matters.Because someone out there may be going through the same storm—and your share might be the lifeline they need.

Let’s keep doing the heart work, together.

#FibrosingMediastinitis #RareButReal #HospiceSurvivor #PatientVoice #Heart2HeartTalk #WomenAndHeartDisease #StillStanding #HeartBridgeCollective