For as long as I can remember, my stomach was a problem.

Some of my earliest memories of unexplained symptoms go back to around age eight. I was lactose intolerant from childhood, had intermittent stomach pain when I ate, struggled to gain weight, and could lose weight far too easily. I went to the doctor so often that visits became a familiar part of growing up.

But no one ever gave me a clear explanation for why I felt the way I did.

Instead, I heard that I was anxious. I had a "nervous stomach." It was in my head. I was being difficult.

As I moved into my tween years, one pediatrician suggested that I eat a piece of bread or toast before breakfast to settle my stomach. I followed that advice, and eating bread before breakfast became part of my routine for more than a decade.

Looking back now, knowing I would eventually be diagnosed with celiac disease, that advice carries an irony I can't ignore. It was one more sign of how far from the answer I was.

But at the time, I didn't know. Neither did the people caring for me. The symptoms continued, and I kept searching for an explanation, even as the questions followed me into the next stage of my life.

When Being Sick Becomes Part of Your Identity

My stomach problems followed me into adulthood and eventually into nursing school.

Some days I couldn't make it through a shift or had to leave early. The hardest part wasn't just the physical symptoms; it was never knowing when they'd happen.

When you repeatedly miss things because you're sick, even when you desperately want to be there, people begin to see you differently.

I became the "unreliable" person.

That label hurt because I wanted to show up. I wanted to work. I wanted to spend time with friends and family. I wanted to be dependable. I just couldn't always predict what my body would do.

At one point, things became so bad that I went to the emergency department 18 times in a single year. During one of those visits, a social worker was sent to speak with me about why I was "seeking care."

The answer seemed simple: I was sick, and I didn't know why. That question stayed with me as I kept searching for the cause.

Thankfully, my primary care provider believed something was wrong. We pursued testing, gastric emptying studies, and Gastroenterology evaluations, but no one could tell me what was causing my symptoms. All of my testing was ‘normal’.

Eventually, I was diagnosed with IBS, and for the next couple of years, that became the explanation.

Even with that diagnosis, it still didn't explain everything, and the questions remained unanswered. I kept looking because the diagnosis had not brought closure.

By the time I finished nursing school, something had changed—not necessarily in my symptoms, but in me. I had more medical knowledge, a better understanding of the healthcare system, and more confidence that I needed to advocate for myself with the same persistence I used for patients.

I had more medical knowledge. I understood the healthcare system better, and I had learned how to advocate for patients. That made it clearer that I needed to advocate for myself with the same persistence, and I began doing just that.

Most importantly, I became more confident in believing what my body had been telling me all along:

This wasn't simply in my head.

I advocated harder. Eventually, I arranged standing orders for monthly IV fluids, which helped me manage for a while. Even then, the deeper question was still unresolved.

The fundamental question remained unanswered.

Why was I sick?

‍