Four Collapsed Lungs, Years of Misdiagnosis — My Life With Ehlers-Danlos Syndrome

Some illnesses hurt because of what they do to the body. Others hurt because of how long it takes for anyone to understand what is really going on.

For people living with rare medical conditions, the journey is rarely straightforward. It often involves years of confusion, incorrect assumptions, and the exhausting process of trying to explain symptoms that few people recognize.

When Everything Began

My story started when I was still a teenager.

At seventeen, something happened that most people never expect to experience. My lung collapsed.

It was sudden and frightening. One moment everything felt normal, and the next it felt like the air had been pulled straight out of my chest. Breathing became difficult and unpredictable.

At first it seemed like a one-time medical emergency.

But it didn’t stop there.

Over time it happened again, and then again. Eventually both of my lungs had collapsed multiple times — two times on each side.

Each episode came with the same questions and the same uncertainty.

Why was this happening?

The Surgeries

Doctors eventually discovered weak spots in the upper portions of my lungs. These fragile areas could rupture, allowing air to leak into the chest cavity and causing the lung to collapse.

The solution was surgery.

During the second collapse on each side, surgeons removed sections of lung tissue where those weak areas were most visible. The goal was to remove the part of the lung that kept failing.

The procedures left several scars across my chest.

One incision was between my ribs where chest tubes were inserted. Two other larger surgical cuts were made between ribs as well — one toward my back and another toward the front — where damaged lung tissue had to be removed.

Physically, recovery was slow but manageable.

But what came next was something I had never imagined.

A Procedure I Will Never Forget

Even after surgery, my lungs struggled to stay inflated. Doctors eventually recommended another procedure designed to permanently attach the lungs to the chest wall so they wouldn’t collapse again.

To do that, they introduced a chemical solution into the chest cavity. The purpose was to create scar tissue that would cause the lung to adhere to the chest wall.

On paper, it sounds like a routine medical procedure.

Experiencing it was something entirely different.

Because of my unusually low blood pressure and the way my body reacts to medications, doctors couldn’t fully sedate me. The medications normally used for heavy sedation simply weren’t safe in my situation.

So I stayed awake.

For about forty-five minutes the solution remained in contact with the inside of my chest cavity.

Even years later, I still remember that experience vividly. It was the most intense pain I had ever felt in my life.

Living With Ehlers-Danlos Syndrome

Eventually doctors discovered the underlying cause of many of my medical issues: Ehlers-Danlos Syndrome, often called EDS.

EDS is a connective tissue disorder. It affects the structures that hold the body together — ligaments, joints, and sometimes internal tissues.

For some people the condition mainly causes hyper-flexible joints. For others it affects blood vessels or internal organs.

In my case it contributed to both lung problems and rib instability.

Because connective tissue is weaker, joints and bones can shift more easily than they should. Occasionally my ribs partially dislocate.

When that happens the pain is immediate and overwhelming. It can stop me mid-step.

Thankfully most episodes pass quickly, usually within seconds. But during those moments there is nothing to do except stay still and wait for the body to settle again.

The Part No One Talks About

The physical pain was only part of the experience.

The harder part, in many ways, was being taken seriously.

Throughout my childhood and teenage years many doctors assumed my symptoms were exaggerated or psychological. Some believed anxiety might be the real cause. Others suggested there simply wasn’t anything physically wrong.

Those assumptions were written in medical notes and followed me for years.

It wasn’t until I was twenty-six that I finally received the correct diagnosis.

Sadly, stories like this are common among people with rare disorders.

Learning to Stay Quiet

Over time something changes when you repeatedly feel dismissed.

Eventually it becomes easier not to speak up.

I stopped mentioning injuries. I stopped explaining pain. Sometimes I ignored symptoms longer than I should have.

That silence nearly cost me my life more than once.

There were times when infections became severe before anyone realized how serious things had become. On one occasion I collapsed with a dangerously high fever after trying to push through illness on my own.

Other times serious infections eventually led to hospitalization.

Looking back, those situations were frightening reminders of how dangerous silence can be.

The Emotional Weight

Experiences like that leave emotional scars as well.

Hospitals and medical appointments eventually became sources of anxiety. Even routine checkups could bring back memories of earlier experiences where symptoms had been dismissed.

Ironically, the places designed to help people sometimes became the most stressful environments to enter.

Continuing Forward

Despite everything, life continues.

Living with a chronic condition doesn’t mean life stops. It simply means learning to adapt.

Over time I’ve learned that persistence matters. Speaking up matters. And continuing to search for answers matters, even when the process feels exhausting.

For many people living with rare illnesses, resilience becomes part of everyday life.

Final Thoughts

Looking back now, the most difficult part of the journey wasn’t the surgeries or even the pain.

It was the years spent searching for answers.

Being heard — and believed — can make an enormous difference for someone living with a rare condition.

Sometimes that recognition is the first real step toward healing.