People often understand diseases as solely biological: an infectious pathogen harms the body and requires medical aid to defeat. However, disease also has social implications. Various social factors can impact not only someone’s likelihood of contracting a disease but also their likelihood of receiving quality medical care. One significant social implication affecting these factors is the stigmatization of disease.

Stigma, as defined by sociologist Erving Goffman, is an “attribute that is deeply discrediting.” Though we normally think of attributes like race, religion, ethnicity, sexuality and gender identity, stigma can also involve disease. The stigmatization of disease refers to the notion that a particular type of person, country or community are the carriers or source of a disease. Like all stigmatization, this involves the process of “othering,” or creating a “them” and an “us.” People attempt to keep the “us” safe by ostracizing the “them.” In the case of the stigmatization of disease, the stigmatized group becomes “them.” Here are four examples of the stigmatization of disease throughout history.

The Stigmatization of Disease: Four Examples

1. Cholera is a bacterial disease that causes extreme dehydration and diarrhea. It is fatal without immediate treatment. The end of the 1800s saw a global cholera pandemic, with a high prevalence in Europe. This led to the United States quarantining immigrants when they arrived in the U.S., creating a dangerous association between immigrants and cholera. At the time, President Harrison declared that immigrants were “a direct menace to the public health.” This association between immigrants and disease lasted long after the threat of cholera was gone.
2. Yellow fever is a viral infection carried by a specific species of mosquito. It causes fever, headache, nausea and, in severe cases, fatal heart and liver conditions. By 1850, yellow fever was rampant in southern American states. Cities like Charleston, Mobile and New Orleans faced the brunt of the disease. Because of tensions leading up to the Civil War, the North used the disease to attack the South. Northerners “denounced the South for its unhealthy conditions and people.” This stigmatization helped fuel the separation between “us” and “them” in the North and South. As such, it had lasting impacts on regional divides in the U.S.
3. HIV/AIDS appeared in the United States in the 1980s. HIV is an aggressive virus that attacks people’s autoimmune system and can eventually lead AIDS. Because early cases affected gay men, doctors named the disease Gay-Related Immune Deficiency or GRID. This initial naming demonized gay men and made them appear to be the source of HIV. Later, the disease was renamed AIDS (Acquired Immunodeficiency Syndrome) when doctors realized that anyone can contract HIV. Despite this renaming, the association of gay men with HIV remains strong. Accordingly, fear and stigma continue to be a barrier to getting treatment in the U.S.
4. COVID-19 first appeared in China in late 2019. Due to its origin, many people have engaged in racist and xenophobic attacks and discrimination against those of Asian heritage. The use of language such as the “Chinese virus” and “Wuhan virus” in the media and from political leaders has encouraged hate speech and physical attacks. In the U.K., citizens have punched and beaten Asian people. In Australia, two women beat Chinese students while yelling, “Go back to China.” In Texas, a Burmese family was attacked with a knife. This illustrates how the stigmatization of COVID-19 has resulted in extreme discrimination and violence against Asian people around the world.

How Stigma Impacts Care

As indicated above,  stigma creates barriers for stigmatized people to access quality care. Dana McLaughlin, a global health associate at the United Nations Foundation and graduate student at Johns Hopkins, elaborates on how stigma creates barriers to health. She understands stigma as having three components that can dissuade someone from seeking care and reduce the quality of care they receive:

1. Internalized or Self-Stigma: This occurs when an individual with a disease internalizes the stigma. They may feel shameful about themselves and their condition. They might also fear telling family, friends and their communities about their condition because of possible ostracization. Either way, this internalized fear may prevent someone from seeking medical care.
2. Public Stigma: This stigma refers to the general population’s opinions  about behaviors associated with people who have a certain disease. In other words, this is a negative cultural context that surrounds a disease. This can vary greatly between countries and cultures, so it’s important to recognize that the public stigma may not be universal.
3. Structural Stigma: This refers to the social institutions that reflect and reinforce the stigmatization of diseases. For example, structural stigma may manifest as a lack of resources for care, like a limited number of doctors in marginalized communities. One of the most prominent manifestations of structural stigma is the criminalization of certain behaviors associated with specific diseases. With HIV, many countries criminalize sex work and intravenous drug use and stigmatize people who engage in these behaviors. This stigmatization may prevent individuals from receiving care for fear of arrest or punishment. On the other hand, stigmatized individuals may “go underground” and engage in even riskier behaviors, like sharing needles, to avoid police discovery.

Combating Stigma and Providing Care

McLaughlin explains that in the context of global health, it is important to understand the syndemic (occurring simultaneously) nature of stigma and disease. These two aspects are “correlating challenges that the global health community has to be able to respond to.”

For McLaughlin, responding to stigma requires prioritizing the needs and experiences of stigmatized people. This might mean allowing them to speak openly about the daily struggles they face due to stigma. It’s also essential that “the people who are most impacted and know the day-to-day challenges of stigma are at the root of planning.” This ensures that interventions and projects actually meet the needs of stigmatized communities. If people do need to change their behaviors, this message should come from respected community leaders. This will ensure that people trust public health advice, making them more likely to follow it.

Though the stigmatization of disease is a powerful force, viruses don’t pick and choose whom they infect. Association between certain types of people or places, behaviors and disease develop from fear and misinformation. Ultimately, it’s essential to question these associations and dismantle stigma by listening to stigmatized groups.

– Paige Wallace
Photo: Flickr