There is Comfort in a Name

It is human nature to name things. Even babies do it. They point at or grab a new object and say “Da” or some other one syllable word as they discover and claim the world around them.

People who don’t feel well search for answers. It is bewildering for them to hear “We don’t know what’s wrong with you”.

Nobody wants to be dizzy. It feels more substantial to have vertigo, even though in reality both terms are equally specific.

Every era has its diagnostic terminology, influenced by larger trends in science and sociology. People who are searching to name their symptoms tend to latch on to the diseases that get publicity and there are usually practitioners who feed into that. Many times diagnostic criteria are undeveloped or controversial. We call these entities syndromes, just like clinicians have done over the centuries before us. We describe constellations of symptoms and speculate about their cause. Only much later do we understand their pathophysiology and become able to sharpen their definitions. This tends to exclude some people who self diagnosed their way into something nameable.

Right now, there is the emerging concept of “Long Covid”. Before that it was chronic Lyme. It was neurasthenia in the early 1900’s. In between, we saw the emergence of fibromyalgia, chronic fatigue syndrome and many others.

Different cultures have different diagnostic frameworks. In Sweden there are 300,000 people with nonspecific symptoms who are diagnosed with sensitivity to electromagnetic fields. They move into super insulated homes off the power grid. I never hear of that here.

Wikipedia and many other sources, including Science Direct, list such “Culture-Bound Syndromes”. For example, Premenstrual Syndrome, Anorexia Nervosa and Morgellons aren’t universally recognized conditions, but fairly specific to Western cultures.

I am torn about using labels that may not fit exactly. They can help as concepts, but can also predispose patients to magnifying their illness experience and thus be self-fulfilling prophecies. I tend toward the concept of shadow syndromes and disease spectrums. (The screenshot below is from a now defunct blog by the former editor of The Health Care Blog, where Aren’t We All Somewhere on the Spectrum of Disease was published before it appeared on my own blog.)

For example, I’m not hung up on how many fibromyalgia tender points a patient has. As long as they don’t meet the criteria for inflammatory rheumatic diseases, I often introduce the concept early on by saying “you have many features of what we call fibromyalgia, so these are some things that may help you feel better, even if you don’t have the full-blown condition…”