When Your Doctor Doesn’t Believe You
Last updated: May 2022
Have you ever had the experience of telling your doctor about a symptom or side effect and feeling ignored, challenged, or not believed? I have a feeling that if I asked these questions to a room of people with RA, everyone’s hands would go up.
Telling my doctor what I need
Over the years, I’ve spent a lot of time figuring out what to do in these situations because, unfortunately, they aren’t rare. A few years ago, I was taking a medicine that made me extremely itchy, and my rheumatologist kept sending me to a dermatologist who had no idea how to help me.
Finally, I had to tell my rheumatologist I was moving on from the medication. I had gotten to the point where I was sleeping with ice packs to keep down the itch. Soon after I stopped the medicine, the itching stopped too.
Understanding a different point of view
I don’t think this happened because my rheumatologist was bad or negligent. Instead, I believe that most doctors work with the numbers they know, like percentages of people who have side effects or the obvious reasons for symptoms, which may be unrelated to the RA (like contact dermatitis).
They also know how hard it is to transition from one treatment to another and are more concerned with joint damage than something like nausea, which can be somewhat controlled with other medication. In the mind of the rheumatologist, staying on a medication that is controlling the RA is of utmost importance.
Figure out what's most important to you
As a patient living with the disease, the equation is a bit different. Of course, I want to stay on a working medicine, but my quality of life is of the utmost importance to me, while future joint damage is just a possibility. So, if I am miserable from trying to handle a side effect or troubling symptom, I want to be heard by my doctor. I want to be able to say no to things that make my life too hard.
How I handle disagreements
What do I need to do when I feel like I’m at cross-purposes with my doctor? I know my goal is to figure out how to feel better and avoid unnecessary suffering. When I describe a problem that I’m having with my doctor and don’t feel like they are taking it as seriously as I want, I try to be as factual as possible and re-assert how this is affecting me negatively.
Sometimes I won’t be able to “convince” my doctor that what I’m experiencing is a side effect, and then I have to decide if I need to speak up and tell him that I want to try something else. I know that we won’t always agree on everything and that, ultimately, I have a choice about what treatments I use. I know more about my body, and my doctor knows more about what works for most people with RA.
Working with skeptical doctors can be infuriating and frustrating, but it will also happen at some point, so having an idea of how to approach it helps me when it does. Do you have strategies that work for you? Let me know in the comments below!
Did you know rheumatologist Dr. Donica Baker is answering community questions?
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