When Frustration Becomes Data: A Simple Act of Patient Advocacy
- maryrburrell
- Oct 14, 2025
- 3 min read
A reminder that every reaction, emotion, and question tells a story worth hearing.
There's a moment in every care journey when you feel swallowed by the system. When you’re no longer an “order,” a “case,” or a “diagnosis,” but a person who’s tired, in pain, and just wants to be heard.
That’s where true advocacy begins.
The Breaking Point
My IVs kept blowing. One after another, every time they started a new one, it failed.My arms were sore, bruised, and I was exhausted from being poked again and again.
Finally, I asked about getting a PICC line. A longer IV that could stay in place and give my veins a break.
But the specialist said no.
“We only place those for certain situations”
That answer hit hard. I was tired and frustrated.I didn’t hold it in. I was visibly upset and spoke up about how fed up I was.
When Someone Finally Heard Me
Dr. Bell heard the frustration in my voice.He didn’t brush it off or tell me to calm down. Instead, he went to talk with Dr. Leary on my behalf.
About fifteen minutes later, he came back with a new plan.Instead of placing a PICC line, we’d try oral medication several times a day to see if it could do the same job.
If it worked, I could skip the PICC line completely and only need a right-heart cath later to check how things were going.
It wasn’t a perfect solution, but it gave me something I really needed, a say in my own care.
That moment felt like a win, not just medically, but emotionally.For the first time in days, I wasn’t just a patient.I was part of the plan.
💡 What That Means (In Plain Language)
A PICC line is a special kind of IV that goes into a large vein in your arm or chest. It’s used when doctors need to give IV medicine for a long time.
When my IVs kept failing, I asked for one because I was tired of being stuck over and over.But instead of jumping straight to another procedure, my doctors suggested trying pills first, oral medicine that might work just as well.
If the pills worked, I could stay off IV treatment for a while.The right-heart cath would come later, a test to see how well my heart and the medicine were working together.
In simple terms: ✅ I got to take a break from IVs. ✅ I avoided a PICC line. ✅ My doctors and I made the decision together.
Why This Matters (Not Just for Me)
Patients often get dismissed or overlooked.Medicine is complicated and full of rules, but that doesn’t mean patients should be ignored. Our lived experiences are valuable too.
Advocacy starts in small moments.You don’t need to lead a movement to make change. Sometimes it’s just asking a question, speaking up, or saying, “This isn’t working for me.” Those moments matter.
When patients speak and doctors listen, care improves.The real magic happens when a doctor who truly listens meets a patient brave enough to speak up.That partnership changes everything!
Partnership beats pressure.The solution wasn’t forcing the PICC line, it was finding a middle ground.That collaboration turned frustration into lasting trust.
How to Speak Up (Even When You’re Tired)
🗣️ Say it plain: “My IVs keep blowing. Can we try something different?”
💬 Ask “why not?” It opens the door to real conversation.
🤝 Bring support: A friend or loved one can help you stay calm and focused.
📝 Write it down: Notes help when your mind is foggy or overwhelmed.
A Note to Healthcare Teams
Patients don’t come with instructions.We come with stories, fears, and experiences that matter.
Slow down.Listen.Repeat what you heard. This helps us know you understand.
Don’t dismiss frustration, it’s not attitude, it’s data. It’s the sound of a patient trying to tell you something important.
Because advocacy doesn’t always look like a big campaign or a press release.Sometimes, it’s smaller, quieter.
It’s one tired patient. It’s one caring doctor.
It’s one honest conversation that changes everything.
💬 “When you listen, we heal differently.”
This story reflects my personal experience as a patient. Every situation is different, and treatment decisions should always be made between you and your healthcare team.
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