“To make decisions about the care the physician recommends and to have those decisions respected. A patient who has decision-making capacity may accept or refuse any recommended medical intervention.” – Patient Right #4.

I use this right a lot. Initially, when I was diagnosed with Young Onset Parkinson’s Disease (YOPD), I felt ignorant and reluctant to have opinions. After all, my Movement Disorder Specialist (MDS) had spent years studying my condition. He must have seen dozens of cases like mine, and if I just followed his recommendations, I’d be fine, right? But as time went by and our relationship matured, the dynamic changed.

“It’s your body, Esther; you have to make the decisions,” he told me—half out of frustration, I think. He was right. He knows the disease, but he doesn’t know me. He doesn’t know how I feel, what my struggles are, what I can tolerate, or what I absolutely can’t lose. I have the capacity and responsibility to make decisions for myself.

My MDS always says he’s the coach; he gives me the plays, but it’s up to me which ones to run. At first, that was scary, but it became empowering. Sometimes, I agree with what he recommends, and sometimes, I decline. There are no hard feelings. He respects my decisions.

Respect is a word that comes up a lot. Mutual respect is the foundation of effective communication, but it’s frequently lacking in the doctor/patient relationship. I’ve been dismissed, gaslit, and talked down to. I’ve lived and worked with doctors all my life. They are experts in diseases, but I’m an expert in me. Both have value, but I call the shots.

Recognize you’re an expert, take back your power, and give—and expect—respect in return. This is what care should be like.