Whether you’re facing a major life challenge like cancer or navigating the complex systems that shape your health, career, or relationships, one truth remains: no one will fight for you like you can.
Over the past two years, I’ve been living inside the world of doctors, scans, and constant uncertainty. But what I’ve learned applies far beyond hospitals. In this post, I’ll share hard-earned lessons and real-world strategies to help you take charge, ask better questions, and become your own strongest advocate—wherever you are in life.
Whether or not to go to the emergency room is always a tough decision. Being a hundred miles from home, staying at an RV resort, with a dog and two cats to care for, makes it even tougher. But that’s exactly where I found myself in June 2024.
My wife and I were at the beach celebrating my birthday when the familiar squeezing pain returned on the first night of our trip. It started with a few annoying pinches here and there. It had been a while, but I recognized that uncomfortable feeling right away. Around 4 a.m., the pain woke me up. It felt like someone was reaching through my lower back and clamping down on my kidneys. Something was wrong. By 6 a.m., my wife and I were frantically trying to figure out what to do. We knew I needed a hospital, but which one? And more importantly, if I were admitted, how long would I be stuck there?
Packing up and heading home wasn’t an option. With the pain I was in, the idea of a two-hour drive—unloading the pets, returning the trailer to storage, then getting to the ER—was impossible. So we started looking at nearby hospitals. About thirty minutes away was one with the same name as the system where I’d had my bladder surgery. That gave me some confidence. I figured they might have access to my medical history or be able to contact my urologist if needed. We decided to go there and hope for the best.
When we arrived at the hospital, we found out that even though it was now part of the same system where I’d had bladder surgery, it wasn’t actually integrated. They had no access to my records. So much for that plan. But the pain had gotten worse, and we were already there. It was time to get help.
They did all the standard things I’ve come to expect in emergency rooms. They started an IV, drew blood, took vitals, and ordered a CT scan—the basics. Not surprisingly, there were signs of a urinary tract infection.
Fortunately, I was able to explain everything that had happened over the past year and a half. I told the medical team about the cancer diagnosis, the treatments, previous hospitalizations for infections, the specific bacteria identified, the medications prescribed, past bloodwork numbers, and more.
That made a difference. I was able to paint a clear picture of my medical history, which helped the team make informed decisions. Because of that context, they prescribed the same antibiotic that had worked for me before. And because I was clearly aware of my situation and willing to return if things got worse, they trusted me to manage it. I didn’t have a fever, and I was responding well to the IV fluids and antibiotics. I was allowed to leave.
My in-depth knowledge of my condition and history, combined with the ability to communicate it clearly, kept me from being admitted to the hospital. I followed the treatment plan, and despite the unexpected detour, we were able to enjoy the rest of our beach trip.
That experience reminded me of something powerful: when you’re fighting for your life, you can’t afford to be passive. Being your own advocate isn’t about being difficult—it’s about being informed, prepared, and willing to speak up. Sometimes, your voice is the difference between getting by and getting the care you need.
Why Advocacy Matters
I’m lucky to have some amazing doctors taking care of me. They’re smart, personable, and genuinely make me feel like they’re invested in my health and recovery. That said, there are two important truths to remember: I’m not their only patient, and they’re human.
I once asked our oncologist how many patients she was treating.
She asked, “Do you mean active?”
“Sure,” I said.
“Over three thousand. We see about seventy per week,” she answered.
I knew the numbers were high, but that still surprised me. I guess I was hoping she’d say a hundred. That would make the math simple: one percent of her time for each patient. But in reality, we’re each just a fraction of a fraction of their daily workload. We can’t expect them to remember every detail of our journey. That’s our job. We have to be our own advocates.
A Recent Example
Last year, as my tumor markers started climbing, my oncologist wanted to try an oral medication typically used for lung cancer. She believed it could work for me based on molecular similarity. Because my cancer was labeled bladder/colorectal, getting insurance approval was difficult. Despite several appeals and a peer-to-peer review, the claim was denied.
We pivoted back to previously approved treatments, which helped—for a while. But when the markers began rising again recently, I reminded her we had switched insurance providers at the start of the year. I suggested trying again for the drug. She hadn’t realized we had new insurance and said she’d look into it. Within two weeks, I started the new medication.
Because I remembered and spoke up, we’re now trying a treatment path that might not have been reconsidered otherwise. That’s advocacy in action.
Five Pillars of Being Your Own Advocate
Pillar 1: Know Your Story
I cannot stress this enough: no one knows your story like you do. You’re the one living it—the main character in a first-person narrative. You’ve been at every appointment, surgery, scan, and conversation. No one else can say that.
That’s not to discount your spouse, sibling, parent, or adult child who may be walking this path with you. But even if they’re with you most of the time, there will be moments—especially during hospital stays—when you’re the only one who can speak for yourself.
That’s why it’s critical to keep track of your history or at least know how to access it. These days, most healthcare systems have portals where you can view test results, visit notes, and past scans. If you’re like me, you probably have five or six different ones across different providers. It’s not ideal, but it’s manageable. Just make sure you can access it when it counts.
Pillar 2: Communicate Clearly
Effective communication is a cornerstone of advocacy. It’s up to you to ask questions—and keep asking—until you fully understand the answers. Don’t let medical jargon or rushed explanations slide past you. Your health depends on clarity.
I keep a running section in a notes app on my phone labeled “Doctor Questions,” with subheadings for each specialist I see. That way, when I’m face-to-face with them, I’ve got everything I want to ask ready to go. It helps me stay focused and makes the most of the limited time I have with each doctor.
But it’s not just about talking with your doctor. It’s also about communication between doctors—which is often assumed, but not guaranteed. One doctor might note something in your chart and intend to loop in the others, but that doesn’t mean the message got through or that the others read it.
Never assume your doctors are all on the same page. If there’s important news, new test results, a medication change, or an upcoming scan, you should be the one to make sure everyone knows. If you have good doctors, they won’t be annoyed. They’ll be grateful you’re engaged and helping connect the dots.
Pillar 3: Trust Your Gut
When you know yourself better than anyone else, you can tell when something isn’t right. That doesn’t mean you’ll always know exactly what’s wrong—but your body will send signals. The challenge is knowing when to wait and when to act.
On the beach trip, I felt that familiar squeezing pain. It reminded me of past symptoms, and while I waited a little while to see if it would pass, the pain got worse. That’s when we made the call to go to the ER. There’s no perfect formula, but one rule holds up: it’s better to be safe than sorry.
But it’s not just about symptoms. Sometimes your gut kicks in when something just feels off. Early in my journey, circumstances led me to seek a second opinion. On that note, you should always get a second opinion. Our plan came with the option to transfer my care. My gut told me not to. Maybe it was the mention of palliative care in the conversation—which, yeah, wasn’t what we wanted to hear. Regardless, staying with our oncologist turned out to be the right move.
Pillar 4: Ask Questions—Then Ask Again
Some people think you should just sit there, nod your head, and let the doctor do their thing. I don’t buy that. This is your body. Your life. You have every right—and every reason—to ask questions.
And if you don’t understand the answer? Ask again. Phrase it differently. Request them to slow down or say it another way. I do this all the time. I’ll say, “So what you’re telling me is…” and repeat it back. It helps me process the information and makes sure we’re on the same page.
When a new medication or treatment comes up, I ask:
• What are the side effects?
• Are there alternatives?
• What happens if we wait or do nothing?
• How will we know if it’s working?
Sometimes, your questions will bring up things the doctor hadn’t thought to mention. And sometimes—honestly—they’re just moving fast, and your question is what makes them slow down and explain it fully.
You’re not being a pain. You’re being a partner. And if something doesn’t sit right, you’ve got to speak up. Your doctors want to help—but they need your questions to do it right.
Pillar 5: Bring Backup When You Can
When you’re facing a life-threatening illness, you’ll have a lot of appointments. Some will be routine, and some will hit you with gut-wrenching news. In my opinion, it’s always better not to go through any of it alone.
Having a second person with you—whether in person or on speakerphone—can make a huge difference. They can take notes, ask questions, or listen for things you might miss. When you’re in that chair, overwhelmed or emotional, a second set of ears can catch the details that slip past.
My wife has been by my side for every important appointment. She was there when we heard the words, “I can’t promise you’ll still be here in a year.” We exchanged silent “WTF” looks when a second-opinion doctor mentioned hospice. She’s been the one talking to surgeons after procedures, keeping records, asking smart questions, and sitting through long, exhausting hospital days.
I’m lucky—I know that. Not everyone has a partner like that. But that’s why I say: bring someone. A friend, a sibling, a parent. Someone you trust. And if you can’t? Use your phone. Most smartphones have a voice recorder app. Ask your doctor if it’s okay to record the appointment. That way, you can listen later or share it with someone who can help you process what was said.
You don’t have to do this alone. And you shouldn’t.
What Advocacy Is Not
Being your own advocate does not mean being difficult. It’s not about arguing or trying to play doctor. And no, it doesn’t mean you have to know everything.
It means asking questions. And if the answer doesn’t make sense, you ask again.
It means speaking up when something feels off, even if you can’t quite explain why. It means staying involved because no one knows your body or your situation better than you do.
And here’s something I’ve learned along the way: advocacy doesn’t mean being pushy.
You can be assertive while still being kind and showing gratitude. Nurses, techs, and doctors deal with overwhelming workloads and plenty of stressed-out patients. When you make a point to say thank you, learn names, and acknowledge their efforts, it builds trust—and often leads to better communication and care.
You don’t need to walk in with a binder full of research. You don’t need to be loud, aggressive, or polished—just clear and honest. You just have to be present, curious, and willing to speak up when something needs to be said.
You’re not just a patient. You’re the only person who’s there for every scan, every decision, and every side effect. That makes you the most consistent part of your care team.
So no, you’re not being a pain.
You’re being responsible.
And that’s exactly what advocacy looks like.
Your Voice Is a Lifeline
For me, being my own advocate didn’t happen overnight. It was the result of living through the process—step by step—and accepting what was happening.
I’m fortunate to be the kind of person who needs to understand why things work the way they do. That mindset has led me to ask more questions, seek out more information, and stay involved in every step of my care. It’s also meant sharing thoughts and ideas with my doctors and making sure each one knows what the others are doing.
If you’re in a similar situation, I encourage you to do the same: learn as much as you can and ask every question, big or small.
You don’t have to know everything.
But you do have to speak up.
Because no one will fight for your life like you will.
Thank you for taking the time to read this. If you found it useful in any way, let me know by leaving a comment, sending me an email or sharing it on social media. You can read more of my story at my personal website, or check out my coaching business – 130 Coaching.
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