You Are Your Best Advocate

One thing I’ve learned through this journey is that no one is going to advocate for my health more than I will.

Living with chronic illnesses means I don’t just have one doctor. I have a cardiologist, nephrologist, primary care physician, specialists, nurses, technicians, pharmacists, therapists, and the occasional emergency room physician. Every one of them is an important part of my healthcare team.

But they’re exactly that—a team.

Each of them sees only a piece of the puzzle.

They may have access to my medical records, but they don’t live in my body. They don’t know how I felt when I walked across the grocery store yesterday. They don’t know that I woke up at 12:30 this morning and never got back to sleep. They don’t know the subtle changes I’ve noticed over the past week unless I tell them.

That’s why I’ve learned to speak up.

When I was first diagnosed with congestive heart failure (CHF), atrial fibrillation (AFib), chronic kidney disease (CKD), diabetes, and arthritis, the medical terminology felt like learning a foreign language. I assumed the doctors would simply tell me what to do and everything would work out.

It doesn’t work that way.

Healthcare is often a partnership, and partnerships only work when both sides participate.

I’ve spent countless hours learning about my conditions. I read. I ask questions. I research. Before appointments, I often use ChatGPT to help me understand medical terms, learn about upcoming tests, organize my thoughts, and build a list of questions I want to ask. It doesn’t replace my doctors or medical advice, but it helps me have more informed conversations with them.

I’ve found that understanding why something is being recommended is just as important as knowing what is being recommended.

One experience really drove this lesson home.

During a recent trip to the emergency room, the staff was preparing to start intravenous fluids. That’s a routine treatment for many patients, but because I have congestive heart failure and carefully monitor my fluid intake, I stopped them and explained my situation.

They listened.

They reviewed my history.

The plan changed.

No one was upset. In fact, it became a reminder that even excellent healthcare professionals are caring for many patients, each with unique medical histories. They simply can’t know every detail unless we tell them.

That’s why our voice matters.

Advocating for yourself doesn’t mean arguing with your doctor or pretending you know more than they do. It doesn’t mean refusing treatment because you read something on the internet.

It means asking questions.

It means saying, “Can you help me understand why we’re doing this?”

It means telling them when something doesn’t feel right.

It means making sure they know about every condition, every medication, every symptom, and every concern.

I’ve also learned there is a fine line to walk.

Some medical professionals welcome questions. Others may seem rushed or uncomfortable when patients ask too many. I’ve experienced both. My goal has never been to challenge someone’s expertise or prove them wrong. My goal is much simpler than that.

I want to understand the decisions being made about my body.

Because at the end of the day, I live with the consequences—not my doctor.

If you are living with one chronic illness—or several—don’t be afraid to become a student of your own health. Learn the terminology. Keep good records. Ask respectful questions. Speak up when something doesn’t seem right.

One habit that has helped me tremendously is keeping notes on my iPhone. Whenever I think of a question, notice a new symptom, experience a side effect, or want to remember something for my next appointment, I open the Notes app and write it down.

I’ve learned that I never trust my memory anymore. If I don’t write it down, there’s a good chance I’ll forget it when I’m sitting in the exam room. That’s not because I’m getting older—it’s because living with multiple chronic illnesses means there are simply too many things to keep straight in my head.

By the time I see my doctor, I have an organized list instead of trying to remember everything from memory.

The same notes are invaluable when a doctor’s office calls unexpectedly. Instead of scrambling to remember what I wanted to ask, I already have my questions, symptoms, medications, and concerns right in front of me. It helps me stay focused and makes sure I don’t forget something important once the conversation starts.

I’ve found that walking into an appointment prepared not only helps me, but it helps my doctors too. Our conversations become more productive because we’re discussing facts instead of trying to remember details from weeks ago.

Bring someone with you if it helps, especially if you’re facing an important diagnosis or a difficult decision. Another set of ears can catch details you might miss and help you remember what was discussed after the appointment is over.

Being your own advocate isn’t about distrusting doctors or challenging every recommendation. It’s about partnership. The best care happens when knowledgeable medical professionals and informed patients work together toward the same goal.

Your doctors bring years of education and experience.

You bring the one thing no one else can.

You live this life every single day.

That makes your voice one of the most important ones in the room.

If there’s one thing I hope you take away from my story, it’s this:

No one will ever care more about your health than you do.

So ask the question.

Take the note.

Speak up.

Because your voice matters.