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What Is Disease Stigma?

How and why we exclude those who are sick.

Key points

  • There is a pervasive stigma associated with many physical and mental illnesses.
  • Stigma is not about who someone is; it emerges in the interaction between people.
  • Stigmatizing views are functional, which contributes to their persistence.

This post inaugurates a series of posts on stigma and communitywritten in collaboration with David Matthew Doyle, Ph.D.—throughout which we will clarify how the stigma associated with disease functions and the consequences it has for individuals and communities.

As we enter a new phase in the current pandemic, many are turning their attention to less obvious effects on individuals and communities. An often neglected class of effects links to the stigma associated with disease.

There is a long history of exclusion of people with attributes that are regarded as undesirable in particular societies, including those with diseases. This can be seen around the world and in relation to a variety of diseases, ranging from physical to mental illnesses. Examples would be the isolation of people with plague, cholera, or yellow fever and, more recently, HIV, SARS, COVID-19, or mental disorders, to give only some examples.

Of course, to some extent such exclusion can be sensible as a means to protect the diseased individual and to limit the spread of disease in the community, but exclusion of people who are ill, or perceived to be ill, often emerges due to stigma. That is clearly seen, for example, if we consider that such exclusion extends to diseases that are not contagious, such as cancer and mental illness, in which social exclusion serves no obvious protective function for the community.

The stigma associated with disease is pervasive and long-lasting. It exists around the world, often in ways that are institutionalised, such as through discriminatory regulations that stigmatize people with mental health problems. It survives even when the people bearing the illness have not (i.e., beyond death)—families of people with leprosy, for example, have not always been allowed to bury their loved ones in public areas. And it often persists even after the risk of contracting the disease has significantly reduced, for example because a particular epidemic is under control. For example, research by Judy Siu (2008) has shown that the stigma associated with SARS persisted over time: Siu (2008) argued that it was “maintained, revived, and reconstructed by the biomedical encounters, government institutions, and public perception.”

Stigma has been defined as “an attribute that is deeply discrediting within a particular social interaction” (Goffman, 1963). Goffman also underlined that “a language of relationships, not of attributes, is really needed” and that “an attribute that stigmatizes one type of possessor may confirm the usualness of another." Indeed, conceptualizations of stigma stress the idea that social stigma is not about the attribute itself, but about its social construction (e.g., Link & Phelan, 2001). Stigma is inherently relational: It emerges between people, as an interaction between an attribute or identity that someone has (or is perceived to have) and the beliefs another person or people have about that attribute or identity. In addition, stigma is contextual; one may be stigmatized in one situation but not in another, or in one society but not in another.

People who possess a socially stigmatized identity are said to have “a spoiled identity,” that is an identity that is discredited—if known to others—or discreditable—if not yet known (Goffman, 1963). In fact, if stigmatized attributes are not visible (as is the case with many illnesses like post-traumatic stress disorder or epilepsy, for example), people have a choice about whether or not they want to reveal them and therefore they can be both discredited and discreditable at the same time, to different people. This element of choice, though welcome in some ways—such as shielding the individual from exposure to prejudice and discrimination—involves its own additional burden. The choice of whether or not to conceal or reveal a particular illness in each and every novel social situation can be cognitively and emotionally taxing.

Stigmatizing views, like stereotypes, can be conscious and deliberate or not, but they are always functional—which is not the same as saying that stigma is a good thing. Jo Phelan and colleagues have summarized this by writing that stigma aims to keep people down, keep people in, and keep people out—and it often meets these aims very well (Phelan, Link, & Dovidio, 2008). That is, stigma serves to ensure that those who are disadvantaged stay disadvantaged (keeping people down), that norms are enforced and people kept in line (keeping people in), and that those who do not follow the norms are pushed out (keeping people out). It is the latter aspect that is most closely linked to disease stigma—being ill is not desirable and therefore those who are ill must be avoided or pushed out altogether. In fact, others have argued that keeping disease at bay is a fundamental function of any type of stigma (Kurzban & Leary, 2001).

Precisely how a particular stigma is expressed can change across time and cultures. As egalitarian ideals come to dominate, these do not erase stigma—they coexist with stigma to change how it is expressed, largely so that it evades sanction. This has most clearly been investigated when it comes to sexism and racism. For example, the concept of aversive racism reflects precisely the coexistence of implicit racist associations with explicit egalitarian ideals (Gaertner & Dovidio, 1986; see Swim, Aikin, Hall, & Hunter, 1995 for a conceptualization of modern sexism). Aversive racists will avoid expressing racism, but will nevertheless do so in subtle or indirect ways.

Different diseases are associated with slightly different stereotypes, but there are some common aspects to disease-related stigmas: Individuals who are stigmatized due to having a particular disease are often blamed for the disease (e.g., lung cancer; HIV), perceived as disgusting, dirty, and immoral (e.g., syphilis, cholera), and sometimes seen as dependent, incompetent, and the target of pity (e.g., dementia, depression). Crucially, medical knowledge does not always help reduce stigma: As Historian Alice Wexler (2010) pointed out in a short but fascinating article on the history of the stigma associated with Huntington’s disease, even though “stigmatization is often attributed to ignorance (…) history suggests that while knowledge in the context of democratic values can help overcome prejudice, scientific and medical knowledge apart from such values can coexist with, or even contribute to, increased stigmatization and rejection.”