Uncertainty and other dirty words

Acting on what we don’t know is taboo, but shouldn’t be.

Pop Quiz: You’re lying in bed with your lover, exhausted and purring, when they turn to you and murmur “I love you.” You’re not sure if you love them. Do you say: (a) “I love you, too” (a social desirability effect), (b) “I just remembered I have an appointment,” (c) “gee, I guess I could love you, or not; I need more information,” or (d) “Do you smell smoke?” 

The same things that are taboo in life, are taboo in science. It’s almost like science is done by people. Alert the authorities. 

Thus not knowing, the undersung holy grail of knowing, sneaks under the radar of what we talk about when we talk about fact. The “we” is experts and the experts, you know, are the people who know stuff. So we can’t go around admitting that we don’t. Bad for business. 

Yet many of us know from personal experience that expert ignorance masquerading as certainty can hurt like hell. One of my favorite examples comes from Naomi Oreskes’ book Why Trust Science? — about suffering crippling depression when she took hormonal birth control pills in grad school. 

For decades, women said this was a problem and experts said it wasn’t, because the link wasn’t sufficiently well-established to say for certain. It took researchers laundering women’s experiences into mountains of doctor-made data (“hard data”) to discover the shocking truth: Women know what we’re feeling. Particularly when we’re feeling like dog shit, thanks for asking. 

According to TCU Psychology Professor Dr. Sarah E. Hill, “Almost half of all women who go on the pill stop using it within the first year because of intolerable side effects, and the one most frequently cited is unpleasant changes in mood.” If almost half of all men who used condoms stopped within a year because they made life feel considerably less worth living, Trojans would come with a suicide hotline number stamped on the back, and replacement theory crazies would have to find a different excuse for racism because a lot more babies would be happening. 

Luckily, Dr. Oreskes got good advice, and took her own experience as a credible form of information — at a time when the medical establishment often didn’t. She changed what wasn’t working for her, finished grad school, and is now kicking climate change denier ass as a Harvard professor. 

Perhaps not coincidentally, some of her best-known work with Eric Conway looks at how wealthy, powerful industries from tobacco to oil have misused uncertainty to misrepresent evidence on serious health risks that threatened their financial interests, as popularized in the film version of their book Merchants of Doubt.

This highlights one of the most dangerous features of uncertainty: People who have a reason to use it to their advantage, often know how to do that. While the rest of us tend to write uncertainty off as an absence of knowledge — a hole around which to make out the important shapes of our world — instead of a vital piece of what we know. 

It makes sense that we’re scanning for shapes on the horizon, fins in the water. Most of the world is this big, blue background of what we don’t know. In evolutionary terms, it didn’t help our ancestors decide whether to go for a swim if they didn’t see a fin; it helped if they did. Information is the helpful exception to the general ignorance rule. Selective attention to lots of little bits of something known helps us make sense of the world, like putting together puzzle pieces. 

The problem is that you have to look at the shape of the missing pieces, too. Experts need to take uncertainty at face value as information. Instead, they often worsen our natural tendency to ignore it by denying or trying to solve it away. 

The usual way of denying uncertainty is to try to launder it back into what we do know as a binary. If you don’t know if you love someone, that means you don’t, right? “If I feel it I feel it; if I don’t, I don’t. If it ain’t really real, then I probably won’t,” in the immortal words of Dead Prez.

This is “absence of evidence as evidence of absence” — a common mistake in the medical and scientific literature best-known from Doug Altman’s work alerting researchers to cut it out. Or, as I like to call it, the “Dead Prez don’t feel it” mistake. 

A lot of women and autoimmune disease patients I know as friends or from my patient support work have recounted bad experiences with doctors denying uncertainty by calling them crazy or well before someone else eventually figured out what was up. And that’s common, with most lupus patients, for example, reporting that kind of experience in an online survey. (Spoiler alert: Dr. House was wrong; sometimes, it actually is lupus.) 

What’s going on when experts deny uncertainty? Faced with a problem they can’t solve, they attack the problem, because it attacked them. As I wrote recently in a book chapter on different approaches to uncertainty in difficult diagnoses, experts who make this mistake are probably experiencing uncertainty as a threat. 

A generous way to think about that threat is as cognitive dissonance. Belief (“doctors help people”) conflicts with behavior (“I don’t help this person”). Busy doctors dealing with complex problems can’t help everyone, brilliant altruists though they are. So they cope by pretending the patient doesn’t really exist — isn’t really sick, or isn’t sick with something in their department.

A less generous way to see this involves dominance. You, difficult diagnosis patient, have insulted the greatness of the master of the medical universe. Because admitting uncertainty would admit something unprofessional — ignorance? stupidity? And Dr. “You’re just a hysterical woman” is nothing if not professional. 

Funny how we can destroy exactly what we’re trying to defend when we’re under the influence of fear. “Fear is the mind killer.” 

Altman’s main point in criticizing the “Dead Prez don’t feel it” mistake is that we have to ask ourselves “whether the absence of evidence is a valid justification for inaction.” In clinical terms, if someone has a bunch of lupus symptoms and is below diagnostic threshold, then maybe you want to say you don’t know if it will help, but they could try taking some lupus medicine and see. If your life derailed when you started taking the pill, then maybe you should try going off it and see if you feel better. (This isn’t medical advice; but I’m not saying you should ask your doctor and believe whatever they say, either. Shove that boilerplate where the sun don’t shine and call me in the morning.)

The larger point here is about the precautionary principle. When we don’t know something, that’s part of knowing. And not knowing doesn’t mean you should not act. Sometimes, it means the exact opposite. 

When we didn’t know what we know now about climate change, we should have acted to prevent massive possible harms. Industry abused the uncertainty to keep the conversation focused on not knowing in a way that encouraged (profitable) inaction. Now we’re locked into an increasingly bleak future. 

It’s not that political leaders and the public didn’t have people telling them this was a mistake. Science communicator and astrophysics professor Dr. Carl Sagan testified to Congress in 1985 “There are still many uncertainties, although the overall picture is, I think, quite clear and quite widely understood and accepted.” 

It was just easy for powerful interests to trade on the fact that uncertainty is tough. Our eyes want to focus to make out shapes, especially faces. Our ears want to pick out different strains of noises — words, cars, bugs. Our hearts want to know if we are loved. 

It’s not a bad thing about us that we want to know. But it’s a dangerous thing if we don’t know it about ourselves. That our desire for knowledge can trick us into stupidity. That our fear of the unknown can undermine our better selves. That you can’t always get the information you want; but if you try sometimes, you might get what you need. 

Good luck, all my loves, to everyone facing their fear, 

Vera