Rumpelstiltskin syndrome in medicine: the power of a name
There is a long tradition in folklore, one shared by shamans and occultists, that knowing the true name of something gives you power over it.
Many years ago I had a very sick patient in the PICU who one morning, totally out of the blue, broke out in a bright, red rash all over his body. The boy had many critical problems already and, although the rash didn’t seem to be causing him any additional difficulties, it was dramatic. I worked my way down the list of usual things that cause such rashes and nothing seemed likely, so I asked a skin expert, a dermatologist, to come and take a look at it.
The dermatologist was a distinguished professor with an international reputation. He arrived in his customary three-piece suit with a large entourage of residents and students. He gravely looked at the rash, removed his half-glasses, turned toward his accompanying crowd, and pronounced that the child had ” erythroderma universalis.” I was then a bit rash myself at times, so I demanded something like: “I can see his skin is red all over (which is what erythroderma universalis means translated into English), but what is the rash from and what should I do about it?” The professor was not amused. He had named the thing — that alone was useful and important.
What I call “Rumpelstiltskin syndrome” is the long tradition in medicine that merely putting a name to a disorder, for example a set of symptoms, goes a long way toward controlling the problem, because it gives our minds power over it. It is a little like the fairy tale in which Rumpelstiltskin conceals his name from the miller’s daughter. She is in his power until she happens to learn it, after which she is on top of the situation. No one wants to be a diagnostic enigma — we feel better when we have a name to call our malady, even if we can’t do anything about it.
Classifying diseases and relating them to one another, and in the process assigning them names, is an ancient tradition in medicine. Called nosology, physicians tried, like botanists studying plants, to derive a sort of family tree of diseases based upon observed characteristics. Even if there was no effective treatment, at least naming the disease would, they thought, allow prognosis, the art of predicting what will happen to the patient. That is a useful thing. For a very long time in medical history it was nearly all physicians had to offer.
We still use the Rumpelstiltskin approach when we confront an entirely new thing, because it can be a useful first step in figuring out the cause of a disease. For example, before we knew anything about the human immunodeficiency virus (HIV), clinicians had identified patients with an unusual cluster of symptoms and signs and called the problem acquired immunodeficiency syndrome, or AIDS. Now we know what causes AIDS, but at first all we could do was describe it and name it.
So, like the miller’s daughter and Rumpelstiltskin, knowing the ‘true name’ of a medical condition is helpful in understanding it. But it also is true that that the simple naming act makes us feel better about the situation, if only because now we know what to call it. In that respect we are little different from those diligent nosologists who labored hundreds of years ago to identify the intricate differences between various fevers, thinking they were, in the process, describing different diseases.
That power can be very negative. Look at “Psoriasis” — all it means is “nasty flaky skin condition that we don’t know the cause of so we try to treat it with lots of expensive stuff”
Naming leaves a lot of people broke and still suffering.
I agree that the naming ritual has a downside. For one thing, it can carry a stigma. When I was a medical student, nearly 40 years ago, syphilis was still called “lues” (pronounced ‘lou-ease’) by a few of my more elderly teachers. They didn’t want to call it what it was.
This would hardly be the first example where doctors exhibit their hubris.