What Exactly Are Side Effects?

Narratives of war

Like so many others, I feel anger, powerlessness, and grief while watching the news from Ukraine. A little introspection showed me that I’m actually responding differently to different kinds of narratives. Watching or listening to analytic accounts makes me angry and vengeful. I’m thinking here of accounts full of charts and numbers: of casualties, of asylum-seekers, of schools and hospitals destroyed. Or assessments by experts on Russian or Ukrainian history, international relations, sanctions, or military strategy.

Other narratives evoke quite different feelings. The personal stories of a woman forced to flee with little more than her small child. Or an elderly couple staring at the wreckage of what had been their home. These evoke not only anger but above all empathy.

It’s the expert narratives that tend to dominate our history books. In the mid-20th century, a few historians saw the need for a different kind of historical narrative. Looking at events from the perspective of ordinary people became known as history from below.

Collateral damage

Looking down from above or looking up from below are two perspectives on the tragedy of war. How does the bereft individual figure in each? For the military strategist, the fleeing mother is collateral damage, an unfortunate side effect of war. But for that mother, it is how she experiences the war and hardly a side effect. Could the difference between effects and side effects really be a matter of perspective?

The Covid-19 pandemic

The days when our TV screens and newsfeeds were filled with images of the Coronavirus, with different numbers, and different experts, seem far distant. In reality, it’s only a few months since it was experts in infectious disease control, virology, epidemiology, and (occasionally) behavioural sciences whose assessments we followed avidly. The numbers we tried to take in related to Covid-19 mortality, hospitalizations, reproduction numbers, and vaccination coverage.

Fear of side effects

Vaccine refusal was a major concern in that not-so-distant past. Even when vaccines were available, many people—more in some places and among some demographics than others—refused them. There’s no single universally valid explanation of why they did so. Like rates of refusal, people’s explanations vary between population groups. If questioned, they might refer to mistrust of the state, of allopathic medicine, or of the pharmaceutical industry. Perhaps the speed of vaccine development made them suspicious, or fear of strange genetic material. For many people in many places, fear of potential side effects played an important role. This is not unique to vaccination. With respect to healthcare practices as different as anti-conception methods and anti-depressant use fear of side effects leads some people to reject medical advice.

What are side effects?

In medicine, side effects are effects other than what an intervention is intended to achieve. For example, following vaccination a sore or stiff arm, drowsiness, a headache, or mild fever are common. These symptoms are generally mild and short-lived. Occasionally reports emerge of more serious adverse reactions following vaccination. Scientific studies should then establish whether the reactions reported were actually caused by the vaccine and should be acknowledged as vaccine side effects. Perhaps the process of verification is less objective and value-free than it is presented as being. There’s evidence that the symptoms that gain acceptance as vaccine side effects may reflect differences in the social status, location, and gender of the people affected by the symptoms. This too is not limited to vaccination.

A study of cancer treatment

A few years ago I had the pleasure of collaborating with Nuria Rossell, a psycho-oncologist from El Salvador who was studying abandonment of treatment among pediatric cancer patients. Qualitative interviews with a small sample of parents who had stopped their child’s chemotherapy partway showed:

Parents found the effects of treatment tormenting. For the six families, their child's lack of appetite was the most common complaint, and a major worry. As one of the parents said, after receiving the chemotherapy, their child lost her appetite for two to four days, and when her appetite returned it was time for another dose of chemotherapy…. Consequently, the child was eating properly only a few days a week, which for her parents was difficult to reconcile with the idea that she was getting better. Parents also worried about their children's weight loss and saw it as a sign that their child was not improving.

Time horizons

From the perspective of the oncologist loss of appetite, hair or weight, are side effects. They are focused on a goal that lies months in the future. If you‘re very poor, as these parents were, worrying about providing your children with the bare necessities of life, your time horizon is short. Will there be work tomorrow? Will there be food on the table? Their life experience doesn’t allow for short-term sacrifices in the interest of long-term goals. The changes they see in their child don't have the same significance for them as for the oncologist. Is the difference between side effects and effects here, too, a matter of perspective? Which one has status and authority and the other doesn’t?