The arrogance of expertise

Here is a thoughtful essay by NYT reporter Ed Yong. (Free Gift link! [as opposed to a not free gift]) It's long, but worth it. Yong was assigned the Long Covid beat and he found -- as I already knew -- that people who tell their doctors about long-term fatigue, pain, and cognitive difficulties, for which the physicians could find no specific biophysical explanation, commonly found their complaints dismissed or even ridiculed:

Covering long Covid solidified my view that science is not the objective, neutral force it is often misconstrued as. It is instead a human endeavor, relentlessly buffeted by our culture, values and politics. As energy-depleting illnesses that disproportionately affect women, long Covid and M.E./C.F.S. are easily belittled by a sexist society that trivializes women’s pain, and a capitalist one that values people according to their productivity. Societal dismissal leads to scientific neglect, and a lack of research becomes fodder for further skepticism. I understood these dynamics only after interviewing social scientists, disability scholars and patients themselves, whose voices are often absent or minimized in the media. Like the pandemic writ large, long Covid is not just a health problem. It is a social one, and must also be understood as such.

Dismissal and gaslighting — you’re just depressed; it’s in your head — are among the worst aspects of long Covid, and can be as crushing as the physical suffering. They’re hard to fight because the symptoms can be so beyond the realm of everyday experience as to seem unbelievable, and because those same symptoms can sap energy and occlude mental acuity. Journalism, then, can be a conduit for empathy, putting words to the indescribable and clarifying the unfathomable for people too sick to do it themselves.

 

In fact, we're beginning to understand that other infectious diseases can have theses sorts of long-term sequelae, although probably not with the same frequency as Covid. Physical and emotional trauma can also produce similar long-term symptoms, which have been labeled fibromyalgia or chronic fatigue or chronic pain syndrome. We don't know the exact mechanisms, although people are starting to get some plausible ideas. (Actually I think there are two different things going on here, although they may often co-occur. One has to do with the immune system, the other with the nervous system, but I digress.) 

 

The good news is that physicians are at least starting to believe people when they present with these complaints, and that efforts are underway at least to learn more about empirical approaches to relieving people's suffering. But they key takeaway for me at this moment is that when confronted with a phenomenon they couldn't explain, something that didn't fit any of the etiological mechanisms they had learned about in medical school, physicians simply denied its existence. This can't be real because I can't explain it, therefore you are either making it up or you're nuts.  

This is common, I believe, when people who are really proud of themselves for being experts are confronted with something they don't understand. It must not really exist.