Dear Dr. Berger,
What are the most important things a patient can do to be an effective advocate for herself? Often, I feel like I am not being taken very seriously by the doctor, whether because I interject about something I read on Google or because I am a woman or because I look kind of young, or whatever the reason. Obviously, the better and more empathetic the doctor the less this happens, but in general: what are your top tips for a patient who wants to be a good advocate for herself in the medical arena?
I have three pieces of advice that I can summarize here briefly. (I wrote a whole book on this topic, if you want all the details.)
Prepare a written agenda, a list of topics which you want to discus with the doctor. It’s easy to get overwhelmed int he doctor’s office; there’s a flood of unpleasant emotions, nervousness - or you just forget completely what you want to say, even things you planned in advance. That’s why it’s absolutely necessary to prepare something in advance. You can send yourself a text with the questions, you can even (old-school) write the list on a piece of paper. But you have to bring something along. Even better is to have a relative or a friend with you who can serve as an advocate when your thoughts get mixed up.
Be ready to “handel” [negotiate] a little bit with your doctor. You have your list (see number 1) but the doctor has theirs. Unless you are the same person, you will have different thoughts and priorities regarding the point of the visit. So you’ll need to bargain. Often the doctor will be the first one who talks about the important points of the visit, but if not, you have to do it. So ask, for example, “What do you think is important to discuss today? I’ve jotted down some notes…” Don’t be surprised if the doctor doesn’t have the same worries as you. Your concerns are yours, and justified, but not necessarily shared by the practitioner.
Ask questions - the more the better. “What do you think the real problem is here? How sure are you? What would you do if this is the case? What about if something else is going on?”
As a patient, you should reward honestly and openness on the part of the doctor. If they say, for example, “I don’t know,” this can actually be a good sign, because it shows that here is a person who isn’t afraid of the truth.
One possible objection: these strategies might not be effective enough, as you intimate in your letter, and you aren’t respected even when you use them? If you don’t have free choice of doctors, sometimes you have to help them improve and realize that you aren’t a difficult patient but a unique individual with her own concerns. Creating a connection in a superficial but friendly way (e.g. a simple conversation about kids, weather, or sports) might sometimes help the doctor see you as a person worth attention and respect.