When the Doctor Doesn’t Listen: Why Self-Advocacy Isn’t Optional

When you’re in a hospital bed, sick and scared, you assume your voice will still count. You hope that even if you don’t feel well, someone will listen. This article is not written so you’ll feel sorry for me. It’s not even about helping others understand what it’s like to live with complete colon dysfunction. It’s about the moments when you realize that if you don’t speak up for yourself, no one else will.

After a recent surgery, my regular surgeon had planned to keep me in the hospital for at least 4 nights. But on the first night, a covering physician came into my room. I had never met him before. He took one look at me, said I “checked all his boxes,” and told me I could go home if I felt ready. I wasn’t ready. I felt rushed, like I was being pushed out before my body was prepared. So I emailed my surgeon. I asked if she agreed with him. She didn’t—and she made that known. I assume she called the covering doctor, because shortly after, he returned to my room.

But instead of discussing my care, he yelled at me. He said that while he was covering for my doctor, he was my doctor, and that I had “no right” to contact anyone else. No right to ask my own surgeon a question. No right to advocate for myself.

Let me be clear: he was not my doctor. My doctor knew me. She understood my body. We had a relationship. This man didn’t know me at all. But he was angry—and worse, he brought in medical students to lecture me, using me as an example of a “difficult” patient.

Do I regret emailing my surgeon? Not for a second. Patients should contact the providers who know them. That’s not being difficult; it’s being responsible. The truth is, I was very sick. I had severe malnutrition, dangerously low ferritin and iron, and was dehydrated and anemic. They couldn’t find veins to draw blood. Eventually, I needed a midline catheter.

Due to an IV fluid shortage, hospital staff gave me a commercial electrolyte drink called Liquid I.V. I told them I couldn’t drink it. I found the taste unbearable, and I needed actual IV fluids. They refused to bring me plain water. Not one pitcher. I was told to drink Liquid I.V. or nothing at all.

When I noted that an open IV bag can’t be reused on other patients, the doctor became even angrier. How dare I, the patient, question him? Thankfully, a nurse saw how unwell I was and quietly hooked up IV fluids. When the doctor returned, he said, “Well, you look much better now, C. Why would you even need IVs?” The line was literally running into my arm as he spoke.

Did I tell him? No way. I knew he wouldn’t believe me. He hadn’t believed a word I’d said so far. Being sick is hard. Being vulnerable in a hospital bed is harder. But having your words completely disregarded? That is one of the most damaging experiences of all. This is why self-advocacy is not optional. Because even in a system full of skilled, compassionate providers, there are moments when the only person truly looking out for you is you.

Doctors don’t know everything. The human body is complex. And more often than not, the answer lies in the patient’s story. But if the person listening refuses to hear it, that story goes nowhere. That man was never my doctor again. And that experience only strengthened my belief that we must keep speaking up, even when it’s uncomfortable. Especially when it’s uncomfortable—because we are the experts on our own bodies, and that has to matter.

Throughout this harrowing journey, one lesson crystallized: self-advocacy is essential. But even more critical is having a team that believes you. As a clinician who encourages patients to speak up, I now realize how hard it is when you’re in a hospital bed, scared, dismissed, and powerless.

As clinicians, we need to stop making patients feel like they’re exaggerating or being difficult. We need care teams that respect patient intuition, that investigate rather than invalidate. Self-advocacy is not about being a difficult patient—it’s about survival. So to every patient who feels unheard: keep speaking up. And to every clinician who has the honor of listening: lean in. You may just save a life.

I dedicate this story to the clinicians who finally listened and helped me reclaim my dignity and my health. You know who you are. Thank you. I also dedicate this article to all the unheard patients out there who are ready to give up on advocating for themselves. Please don’t! You are responsible for your body, your journey, your healing—mind, body, and spirit. You must continue to fight that uphill battle. It may be the only way to ensure that you save your own life!