Trusting Your Doctor

It’s not often you get good news when you have a chronic illness, so it’s important to hang on to it when you do get it. I saw my neurologist for my 3-month follow-up and I’m neurologically stable at the moment. No TIAS, no seizures—in fact my seizures are stable enough that we are reducing one of my medications with the goal of discontinuing entirely.

I have a good relationship with my neurologist—so much so I recommend her to anyone looking for a good one that listens well, stays current on new research, and cares about her patients. I have a lot of respect for her and that builds my trust in her. This is something I don’t give readily. I’ve had a lot of negative experiences with neurologists. In fact, I’m writing my memoir right now and I’m in the chapter that actually examines a period of time when I was searching for a diagnosis and seeing neurologists to get help—what I ended up with—a lot of misdiagnosis, misogynist doctors, and sadly the failure to recognize I was stroking until it was too late to save functioning. Suffice it to say, I trust few doctors and often it takes a long time. When I do have one I trust, I cling to that doctor. My neurologist is one of those doctors.

I think about the process of trust a lot when I think of my doctors. Let’s face it you have to be able to immediately be comfortable with them—so much so you have to be willing to be naked with all your noticeable imperfections dangling out there. You have to be able to talk about embarrassing things as well. And you have to be able to do this instantly. You don’t have the luxury of building up to disclosures that you have in other relationships. Other relationships you can put people through the tests and obstacle courses or a complex maze where you are the center goal. Not with doctors, nope. You have to leap. And some doctors fall short of the catching process.

Trusting my doctors is a core part of my relationship with them and it’s focused on three things. First, their professional confidence: Do they demonstrate they know what they’re talking about. However, there needs to be a lack of narcissism in the process. I immediately feel suspicious of a narcissistic doctor—I immediately start to think that he or she will likely not listen to a darn thing I’m going to say about my experience. Instead they will be preoccupied with their internal thoughts over my external speech. Second, are they capable of sitting there to listen to my story—it’s complicated and it’s been a difficult road, but not knowing it places me at serious risk. The doctor who can listen is a doctor who will earn my trust and will likely take better care of me. Third are they willing to be honest and direct with me. I appreciate here not everyone wants to know what doctors are thinking in terms of diagnosis, but I like to hear doctors work out their diagnostic ideas, even if it means they think a set of symptoms may be due to psychological factors like stress. (I prefer straight physical causes than psychological ones—these seem a lot harder to address.) And finally there can’t be derogatory statements made due to my body or gender—and yes, I’ve had doctors like this. I even had a doctor who sent me a personal letter stating I couldn’t survive without him and needed to stay with him—seriously! Doctors are people first, which means all the issues that impact society are present in the medical field too.

When I think about these criteria, I realize just what an uphill battle a doctor has to engage in to earn our trust or at least mine. But then I add a “tough sh#@%” to myself—it’s my body and I deserve to have doctors respect it.