Why Do We Stigmatize Only Some Diseases?

This is the second in a series of posts on stigma and community written in collaboration with David Matthew Doyle throughout which we will clarify how the stigma associated with disease functions and the consequences it has for individuals and communities.

In our previous post we described what disease stigma looks like and what it involves. However, not all diseases are socially stigmatized and different diseases are stigmatized to different degrees. What determines this?

One factor is whether a disease is believed to be contagious (e.g., SARS, Covid-19). Contagious diseases are feared not only because people do not want to get infected, but also because of related concerns regarding, for example, possible loss of employment or social exclusion (“if I get sick, I will be shunned or I cannot work”). Some even argue that avoidance of contagion is not only at the root of disease stigma but also at the root of other stigmas—for example, work on the “behavioural immune system” frames exclusion of members of other social groups (outgroups) around the need to behave in ways that protect us from disease. The argument is that our body uses up a great deal of energy to fight against infection and disease, and sometimes loses the battle, so we need a system that helps us to avoid disease. We can effectively do this by avoiding people who are ill—or people whom we think might be ill (or likely to become ill). This extends to non-infectious diseases because what triggers this system is the cue to disease or ill health, which is often the same for contagious and non-contagious diseases—e.g., both contagious and non-contagious diseases can be associated with paleness, fever, vomiting, or exhaustion. The behavioural immune system is therefore an imperfect system that often leads to errors—pushing people away when they are in fact not contagious, as well as failing to do so when they are. Given that the latter type of error is perceived as more costly to individual and community health (because it means contagious diseases remain undetected), the system is biased toward over-detection of infection risk. Note, however, that the fact that there is a clear logic to this bias does not mean it is correct—that is, it is not necessarily the case that under-detecting illness is more costly to society than over-detecting it.

A second factor influencing whether or not a disease is likely to be stigmatized is whether or not the disease is physically apparent (visible)—illnesses like syphilis are often more widely stigmatized than invisible illnesses like irritable bowel syndrome, partly because they are more apparent and seem potentially more serious, and partly because when the disease is not visible people do not have to fear becoming the target of stigma themselves if they get it. A striking study has even found that people are more likely to associate a person with disease if they have a visible difference (e.g., a port wine stain birthmark) but are otherwise known to be healthy than if they are not visibly ill but are known to have an illness (e.g., tuberculosis).

Third, a disease is more likely to be stigmatized if the cause is believed to be a fault of the individual, whether or not this belief is accurate. In fact, attributions of responsibility can be considered an aspect of stigma, or to emerge from stigma. But they can be at the origin of it, too—that is, diseases that cannot be perceived to be under the person’s control (e.g., when they are caused by an accident) are less vulnerable to stigma. An illustration of this principle is the fact that the stigma associated with TB increased when the belief that it was inherited was replaced by understandings about contagion.

Stigma is also stronger when the disease is believed to be terminal or degenerative, like dementia, possibly because the idea of not being able to come back from that illness is particularly threatening to one’s sense of fairness and security. Disease progression can also influence stigma, with the likelihood of symptom severity worsening, rather than remaining static or improving, leading to greater stigma and social distancing; that is to say, disease course matters.

There are several reasons why diseases can become stigmatized and, crucially, some are based on inaccurate beliefs—for example, regarding contagion and responsibility. Public health campaigns can exacerbate stigma when they emphasize individual lifestyle behaviours as responsible for ill health or disease. In upcoming posts we will explain why this a problem both for individuals and communities.