A Pained Life: Should Doctors Be More Curious?

By Carol Levy

In my last column, I wrote about doctors needing more empathy. I feel it’s important for them to understand and relate to whatever their patients are experiencing.

I have been sick for a few months, a jaw infection that keeps coming back. The left side of my face, the side with the trigeminal neuralgia, is where the swelling is located. 

The doctors all seem afraid to try and figure it out: “Well, it's probably related to the issues you already have there.”

If that were true, the swelling wouldn't be new. But it is, and that doesn't seem to faze them.

My family doctor referred me to a bunch of different specialists. Some actually touched the area of swelling, but other than a cursory heart and lung check, they did nothing but order blood tests, an MRI and CAT scan. All were negative. 

Then they threw antibiotics at it. That too didn’t help. Maybe that means they should look into it further, maybe by examining me? It doesn't happen. I merely get, in one form or another, “I haven't a clue. Sorry I can't be of more help.”

All of them were nice to me. Some even showed empathy. That made me feel heard. And yet, I wasn't heard. Had I been, they would have done more than the basic exam and tests. 

I thought a connection, through empathy, would enable more trust in doctors, more acceptance of a diagnosis or lack of one. 

It turns out, it’s not a question of empathy, but a lack of curiosity that makes me doubt their medical ability. Is a lack of curiosity the same as indifference? Do they just not care?

So many of us have experienced this when we present to a doctor with chronic pain. First of all, pain is wholly subjective. They have to choose to believe us (or not) when we say we are in pain. Then they have to make an effort to find the cause. That almost requires them to do a full exam, to show curiosity about our bodies, and therefore our pain.

It seems to me, if someone decides to go to medical school, curiosity has to be a motivator. Curiosity about how our bodies work, what happens when they don't, and what causes them not to work as they should.

What happens to that curiosity? Do doctors become jaded? Does the thought process go something like this: “I don't need to do an exam. Blood work and x-rays will tell me, and if they don't, that's the way it goes.”

I find I have to ask my doctor if it could be this or that. I have to suggest that he order an x-ray. It seems to be my job to come up with ideas. Since there is an infection, maybe there is an underlying disorder? 

Sometimes he merely shrugs.  Other times, he goes with my suggestions.

Maybe that makes it a partnership, but it’s one based on my work and thoughts, not his. And it’s all based on my curiosity about what is making me sick. 

Somehow, that feels wrong. Because, after all, isn’t being curious enough to figure out what is wrong the doctor's job?

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 40 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.