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How to Advocate for Yourself to a Medical Professional to Get the Care You Need

October 12, 2022

Abby Burch, Communications Specialist

“You are stressing yourself out and that is causing your symptoms. Don’t worry about it so much.” 

From the first doctor visit to cholecystectomy (also known as gallbladder removal surgery), my self-advocating quest took nine months. At the first appointment, I hoped for answers. But instead, my doctor dismissed my symptoms and blamed them on stress. 

I left the appointment feeling totally defeated. But the more I thought about it, the more driven I felt to make my voice heard. And I’m not alone—countless people experience this situation every day. So here’s a cheat sheet on self-advocacy. What it looks like, why it’s important, and how to become an expert on yourself. 

What Self-Advocacy Looks Like 

Self-advocacy is a hard but necessary part of being a person with a disability. I was diagnosed in 2012 with type 1 diabetes, an autoimmune condition with no cure. 

Over the last 10 years, I have become an expert on my illness. But, not because I wanted to. You see, I was actually misdiagnosed at first. For five months, my symptoms weren’t getting any better and I was frustrated. That’s when I first spoke up for myself and my needs to a medical professional. 

Self-advocacy takes many different forms for different people. For some, they become an expert on their illness. For others, they get involved in studies, research, or non-profits. They use their lived experience to help future generations. Or, if you’re like me, you connect with others experiencing something similar. Online communities are a great way to find and offer support with others who can relate.

Why It’s Important to Self-Advocate 

There is stigma around speaking up for yourself.

It’s scary to imagine that your doctor won’t listen to you. Or that you’ll be judged by them. But self-advocating gives you, the patient, a chance to get your needs met. It helps you have control over your own life. If you don’t speak up for yourself, then change can’t happen. 

How to Be an Informed Self-Advocate

Many medical professionals will dismiss patients who bring a self-diagnosis from Google. Your approach is important in order to be effectively heard and understood. 

Document Your Symptoms and the Dates They Happen

So you’ve noticed something isn’t quite right with your health. Start taking notes. What changed? How long have you been experiencing this symptom? Does it correspond to anything else in your life?

Keep detailed notes of what you’ve noticed. This article has tips and information on getting your health information organized. 

Be Honest with Your Doctor About What You’re Experiencing

Some symptoms can be embarrassing or they may seem too minor to mention. But even the most minor symptom can be important for your doctor. And together they paint a complete picture of your health. Honesty with your physician is important for them to help you. Also, don’t be afraid to speak up for what you need. 

  • Don’t be afraid to say no. If your doctor is wanting to try a treatment that you’re uncomfortable with, say no
  • If you sense a change, ask for tests. You know your body best. If something’s changed with how you’re feeling, ask for another test, even if you had one recently. 
  • Be honest with yourself and your doctor about your feelings. If you’re scared, it’s ok to say so. It’s also fine to cry and get frustrated. Your doctor is here to help you. And if they’re not helping, look for someone who can. 

Don’t Be Afraid of Getting a Second Opinion

If you don’t feel heard or think you’re getting bad advice, seek out a second opinion. A 2011 study found that the quality of relationships with those in a person’s support system shape their ability to self-advocate. Your doctor is part of your support system. And there is no shame in seeing a different medical professional. Think of it like stepping away from someone who isn’t helping you become your best self.

The Only One Who Can Put Self-Advocacy Into Action is You

Being a self-advocate can be hard but rewarding. For me, it meant getting the care I needed. What could it mean for you? 

A guest blog post by GT employee

Abby Burch