Shortly before ending my cardiology rotation, I saw a patient in consult whose diagnosis I figured out as soon as she started talking.
This woman, Mrs. Hickory, suffers from fibromyalgia, which disease is quite possibly the source of more frustration in physicians than almost any other. It is a disease of unknown cause which causes debilitating chronic pain, without any anatomical basis. The disease is often referred to, in a slightly deprecating fashion, as "supratentorial," which is the medical professional way of saying "it's all in your head," referring to the tentorium, a membrane which roughly divides higher from lower brain function. (Feel free to clarify, S. Lee) Anyway, I've seen enough of these patients to be able to pick them out across the room. Generally female, 30s to 50s, and usually with a constant facial expression of someone who has been wronged. They usually talk with a bit of a whine in their voices as well.
So you have a combination of a mysterious disease, a large proportion of physicians who don't believe it is real, coupled with a personality which is not, to put it mildly, endearing. You can see why people avoid rheumatology.
But I actually like fibromyalgia patients. They do whine sometimes, and some of them have an almost amusing inability to talk about anything but their pain for more than 30 seconds or so, but I think part of why they have the expression and manner they do is the fact that no one believes them. It's a maladaptive response to the fact that their disease pushes them to the sidelines of life.
What is it I see in them? They are, for one, the absolute best test and best encouragement of bedside manner I have yet to experience. A patient who is in pain no matter what you do to examine them, wincing even at the stethoscope being placed on their chest, is a challenge, surely. But I feel that if I can connect with and gain the trust of someone hard wired to distrust and feel threatened, I can gain anyone's trust, right?
There are a couple of key points in interacting with these patients that are not intuitive, but they transfer well to other patients too. First, I have to remember that the pain they feel is real, even if I can't discover the source. It's like Morpheus in the Matrix: "[What is real is] electrical signals interpreted by your brain." That's horrible metaphysics, and I'm not an empiricist, but it is where you need to start with these patients. I suppose, though, a deeper point could be made that the essence of understanding is the recognizance of a person outside yourself, so that the interaction, from the first, proves a reality outside oneself. But fibromyalgia sufferers are rarely so philosophical.
To return, accepting the patient's perspective on events is necessary to start. Secondly, I have to let them talk. This can be challenging, but more than a lot of other patients, these need to be heard. That's what I'm there for, so I let them talk. Third, when I start making plans, I have to engage the patient and make sure they understand what we are doing fully. Making sure they have a voice, that they do not feel as marginalized as their disease can make them, is vital here. And fourth, sometimes a little handholding goes a long way.
I'm not a real big physical contact kind of person. I don't generally hug friends, etc. Probably because I'm male, but the point is, medicine has taught me that you have to have physical contact. It's part of the interaction. Hospitals are rather antiseptic, and it is possible to do a large part of the typical exam and workday without actually touching a patient. Even a stethoscope allows some distance, and was actually designed for that purpose. (True story: The stethoscope was invented to allow physicians to hear heart sounds without placing their ear directly to the patient's chest, as it offered some young ladies offense. Not to mention the expense saved on ear-cleanings. I made that last part up) So when a physician, or physician to be (176 days!) like me actually touches a patient, holds their hand while speaking with them, places a hand on their shoulder while using the stethoscope, it makes a difference. At least, that's what my patients have told me.
All of these points can profitably be applied to any patient, but it is toughest with patients who force me to be intentional about all this. Anyone can be nice to someone sweet. It takes real grace (or long practice) to be nice to someone who is not sweet at all.
So from fibromyalgia patients like Mrs. Hickory, I am taught patience and compassion. More important, I'm taught how to be both patient and compassionate professionally. And as I sat on Mrs. Hickory's bedside, holding her hand as she cried out her story of pain and misunderstanding, I remembered why I came to medical school.
But leave me a little love,
A voice to speak to me in the day end,
A hand to touch me in the dark room
Breaking the long loneliness.