The Power of Advocacy: Why You Must Be Your Own Champion in Your Health Journey

The Frustration of “Not Knowing”

There is nothing quite as defeating as knowing something feels off in your body but being unable to put a name to it.

Over the past few years, I’ve dealt with a wide range of symptoms—some subtle, others more persistent, some waking me up throughout the night in excruciating pain. Often times leaving me struggling to find the energy to function throughout the day, but none ever leading to a clear diagnosis. Despite visiting several specialists, no one ever seemed to look at the full picture. Each appointment was like a piece of a jigsaw puzzle being thrown into the box, but never fully put together. I began to feel discouraged with each new referral, each new “maybe it’s this,” followed by more testing, more waiting, more inconclusive results.

To add insult to injury, the financial burden of all these specialist visits was no small matter. Many of them weren’t fully covered (if covered at all) by insurance, which meant hefty out-of-pocket costs. Add in missed work and sometimes long drives to see the specialists who even had availability.  It became more than just physically and emotionally draining—it was financially draining, too.

Trusting Your Intuition and Health Advocacy

At the start of 2025, I chose “Health” as my word for the year—and I’ve truly committed to it. I’ve been intentional about caring for my physical, mental, and emotional well-being. Part of that journey included healing from past traumas and I even wrote and published a book in April, sharing my story.

But by mid-year, I was still facing the same cyclical symptoms. That’s when it hit me that this isn’t in my head, something is not right and I was determined to find a provider who would be willing to dig a little deeper. I took a leap of faith and self-referred to a new Doctor.

That choice marked a turning point.

From my very first visit, this provider did something that changed everything—he truly listened. He asked thoughtful questions that no previous specialist had explored and ordered lab work—not the usual panels I’d done over and over, but a more thorough and targeted set of tests that finally began to reveal missing pieces of the puzzle.

The First Real Answers

After just two visits, I walked away with something I hadn’t had in years: validation. While the journey wasn’t over, I at least had something tangible to hold onto.

The bloodwork showed that, for reasons still unknown, I have no immunity to Pneumococcal serotype 14, despite having been vaccinated as a child. Without immunity, I found out I’m more susceptible to bronchitis, pneumonia, sinus infections and ear infections. The revelation explained a lot of what I had been experiencing physically.

This past week I was able to get re-immunized and in a few weeks, I’ll find out if I’ve built immunity this time. It was the first small victory—a glimmer of hope that, finally, something made sense, but even that moment of relief came with a heavy caveat.

The Weight of the Unknown

Alongside the helpful findings, my new doctor also noted that some of my lab results were significantly elevated—red flags that pointed toward something deeper going on. The possibilities? An autoimmune disease…or cancer. Hearing those words out loud was jarring. He went onto explain, the Immunophenotyping lab test is useful in differentiating between types of immune cells, detecting immune disorders or abnormal immune responses, as well as diagnosing blood cancers (like leukemia or lymphoma).

Suddenly, I found myself in that in-between space that so many know all too well: the waiting game. You know something is wrong. Your labs say so, but the next steps—the scans, the follow-ups, the diagnoses—will take more time.

When you’re worried about what might be happening inside your body, time can feel like the heaviest burden of all.

Why Advocacy Matters More Than Ever

I wish I could say my journey ends here, neatly tied in a bow, but I’m still in the thick of it, still waiting, still not fully sure of what lies ahead.

What I am sure of, though, is this:

If I hadn’t advocated for myself—if I hadn’t researched and found another specialist, asked more questions, trusted my intuition—I would still be stuck in the same endless loop. I would still be wondering why it’s such a struggle for me to stay healthy. I wouldn’t have that first piece of clarity, nor would I have started steps in the right direction. I wouldn’t be any closer to understanding my body and it’s better to catch things earlier rather than later.

Here’s what I want you to know: you have every right to ask questions, seek second (or third or fourth) opinions, and keep pushing until you feel heard. Go to your appointment with a copy of previous specialist notes, labs, family history, questions you want to ask and a list of all your symptoms. You’d be surprised how things such as occasional night sweats, could be affiliated. If it’s something you feel is cyclical, keep a log in a calendar app on your phone so you can track how frequent you’re experiencing these symptoms or the severity. Is it a pattern? Are there any foods that affect how you feel?

Doctors are incredibly important, but they are also human. They don’t always get it right the first time and with healthcare systems stretched thin, patient volumes high, it can be easy for your unique story to get lost in the shuffle.

That’s why it’s so critical to become your own advocate.

Moving Forward

I don’t know exactly what’s next, but know I’m not a passive participant in my health journey.

If you’ve been feeling like you’re spinning in circles—misunderstood, dismissed, or just plain exhausted—I want to encourage you to stand up and speak up. Your voice matters. Your story and your health matters. You deserve to feel better.

Being your own advocate isn’t always easy, but it may be the most powerful decision you ever make. No one knows how your body feels except you. You just have to listen and trust your instinct.

If you’re on a similar journey and need someone to walk beside you or just listen, my inbox is always open. You’re not alone. 💛

xoxo,