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, a distinguished professor in a three-piece suit, gravely looked at the rash, removed his half-glasses, and pronounced that the child had “a generalized erythroderma.” I was then a bit rash myself at times, so I demanded: “I can see his skin is red all over (which is what “generalized erythroderma” means translated into English), but what is the rash from?” The professor was not amused. He had named the thing — that alone was useful and important.

What I call “Rumpelstiltskin syndrome” is the tradition in medicine that 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 giving 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. Even if there was no effective treatment, at least naming the disease would 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.

It also can be a first step in figuring out the cause of a disease. For example, before we knew anything about the human immunodeficiency virus (HIV), doctors 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 and name it.

So, like the miller’s daughter and Rumpelstiltskin, knowing the ‘true name’ of a medical condition is helpful. 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.