On the Stigma of COVID-19
Let’s separate the illness from the patient.
Posted Apr 07, 2020
I write this from a northern suburb of Chicago as I finish my third week of lockdown in response to the novel coronavirus. Our governor has ordered another 30 days of shelter in place. The experience is frightening and surreal, leading to an especially confusing time in history, as well as the ingredients that create stigma.
As editor of Stigma and Health, a journal of the American Psychological Association, I reviewed all volumes and found no articles on stigma and pandemics. We are in unchartered territory here. Confusion worsens when some people publicly and loudly question whether this is a true threat or a hoax perpetrated by some mal-intended segment of society.
Fortunately, health leaders at the Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and Federal Drug Administration (FDA) have regularly informed American residents with evidence-based directions. Unfortunately, health leader insights have been undermined by political agendas. Further confusion arises as members of the elected government countermand CDC/NIH/FDA directives with ideas not supported by research or assertions that local concerns are unnecessary (e.g., “New York’s plea for more ventilators is hysteria!”).
Confusion is the breeding ground of stereotypes, prejudice, and discrimination. Humans as psychological beings have a deep-seated need to understand the “why” of an event, especially unusual and threatening happenstance. Why is the coronavirus pandemic plaguing the globe? What is to blame?
Of course, the virus is the obvious answer with CDC/NIH/FDA recommendations targeting it. We rally as a society to fight this threat by seeking to isolate it from the rest of us. Stigma arises when the virus and the person with the virus are conflated; when we change the question from what’s to blame to who’s to blame. Twenty-plus years of research have shown that the stigma of mental and physical illnesses extended to people with these illnesses can be as harmful as the symptoms themselves.
There have been some absurd examples of extending concerns about the coronavirus to people. Recently calling COVID-19 "the Chinese virus" is among the most egregious. This equation does nothing to help understand the threat and instead fans the flames of ethnic bigotry that already exists across some groups. In some ways though, this bigotry ironically highlights the insidious danger of stigma because it reminds us that anything that connects the experience of the coronavirus with racism is fundamentally a social injustice of the stigmatizing kind.
Who is likely to be harmed by the stigma of the coronavirus? People testing positive for the virus or showing symptoms are the most obvious victims. Erving Goffman viewed these people as having spoiled or tainted identities which justifies prejudicial responses against them. Families and friends of identified patients may also be stigmatized by extension.
Researchers have identified social distance as one prominent result of stigma. The public seeks to avoid those with a stigmatizing label in order to escape the risk of associating with the tainted identity. This translates to educators who shun responsibility to labeled students, employers who decide not to hire someone with a stigmatized health condition, landlords who refuse to offer suitable housing, legislators who turn their back on priorities of infected constituents, faith-based communities who are unwelcoming, and health care providers who offer substandard care.
Here’s where the public health approach to the coronavirus pandemic may yield unintended consequences in terms of stigma. The CDC/NIH/FDA are calling for social distance as the primary tool for flattening the curve to decrease the rate of infection. Avoiding people altogether is preferred with physical separation by six feet apart as the minimum rule. The risk of stigma occurs when distance from the virus is confused with distance from the tainted individual.
Let me be clear. I am in no way suggesting readers ignore CDC/NIH/FDA recommendations for social distance to stem the infection. It seems to be the one widely agreed-upon approach to quash the pandemic. But we need to be mindful of the stigma that may extend to the person with the infection.
So, what do we do about stigma during the pandemic? First and foremost is to call it out. People are being disrespected and discriminated against because of COVID-19 and it is wrong just like any forms of racism, sexism, and ageism.
This kind of stigma harms people with COVID-19 in three ways. First is public stigma, harm that results when people endorse stereotypes about individuals with COVID-19 (“they’re tainted") leading to discrimination: not renting to people who may have been exposed, excluding them from school, or not inviting them into your faith-based community. Second is self-sigma: the disrespect that results when people associated with the virus internalize stereotypes and feel tainted or dirty. It is difficult enough dealing with the virus; in addition, people are supposed to be ashamed of themselves.
Third is what has been called label avoidance. Goffman said stigma is an obvious and observable mark, that the public discriminates against; for example, Black people because of skin color, women because of body type, and elder citizens because of gray hair. The mark of most stigmatized health conditions is different because it is hidden; one cannot tell, for example, who in a room of one hundred people is positive for the coronavirus. The stigma of health arises from a label. “Hey, that’s Mark and he has coronavirus.” And labels most typically occur because of testing and treatment experiences. “I just saw Mark drive away from the public coronavirus drive-up line in my town. He must be infected!” People will try to avoid the label by avoiding health-related experiences. Because of label avoidance, they will choose not to be tested or will not isolate should results be “positive.”
Two additional approaches to stigma change are found in the research literature: education and contact. The myths of illness are diminished when people learn facts about transmission, prognosis, and treatment. Everyone can be part of this effort by absorbing CDC/NIH/FDA information and sharing with one’s social network. This is best accomplished by linking with websites for each center/institute/agency which now have regular posts for public consumption about the pandemic as it plays out.
In addition, everyone promotes education by being alert for misinformation. For example, several media sites have passed on assertions about COVID-19 that are not supported by the research. Response to misinformation is not handled well with diatribes and ad hominem slurs. This leads to a battle of opinions rather than an exchange of knowledge. Instead, everyone should share links with research evidence regarding the pandemic, encouraging readers to consider it for themselves.
Contact is the best way to diminish the harm experienced by the person stigmatized by the coronavirus. Research consistently shows interactions between people with a stigmatized condition and the public is the best way to erase stigma’s harmful effects.
My research, for example, has demonstrated that interactions between people with mental illness and everyone else is the most effective way to replace prejudice and discrimination with ideas of integrity and respect. This interaction is most effective when the exchange occurs between peers: people viewed at the same level of social status. Hence, interactions between people labeled with coronavirus and the public will challenge the corresponding stigma.
Effective contact stories have two parts: on-the-way-down experiences and on-the-way-up results. On-the-way-down narratives discuss the process of being diagnosed and the fear it entailed, worries about infecting others, and challenges of symptoms. On-the-way-up results hail the reality of recovery; that symptoms go away, life returns to normal, with the person back with family and friends. Narratives end with the take-home message: “I’m just like you!” Despite the infection and illness, the person is fundamentally human and worth the kind of inherent dignity due to all people.
Although research shows contact is most effective in vivo, interactions will obviously differ during, compared to, after the pandemic. In order to honor the quarantine, media is the way to effectively maintain contact during the pandemic. First-person blogs and videos, where individuals associated with coronavirus tell stories of infection and recovery, will have positive effects on stigma. Perhaps even more potent are real-time media exchanges, especially those when the person is live on camera and viewers can “check out” for themselves the illness’ impact.
Famous people are one way to promote the positive effects of contact. Tom Hanks, Idris Elba, Placido Domingo, and Prince Charles have all tested positive. On March 30th, Chris Cuomo of CNN news came out with his positive test for coronavirus and the subsequent serious symptoms of the illness: “shivering, hallucinations, being beaten like a piñata.”
Seeing his online story about the illness humanizes the experience and decreases stigma. However, research shows testimonies by famous people have less effect than interactions with the average person; the person we sit next to at work, or in our classroom, or in the faith-based community. The challenge is how to promote these exchanges. Virtual meetings that include advocacy agenda are one way. Faith-based communities, for example, can host discussions about the virus with people testing positive invited to tell their stories.
The anti-stigma campaign must continue after the pandemic ends. In fact, the lingering effects of attitudes about people who tested positive may be an enduring legacy of the worldwide infection. In an atmosphere of fear and confusion, stigma becomes a lasting stain on people associated with the illness.
Once again, contact is the best way to deal with this. After the pandemic, we must throw away notions of social distance and promote face-to-face interaction. Public fora need to be convened where people with lived experience tell stories of recovery. These exchanges are most effective when leaders of the fora welcome the person with lived experience proudly and intimately: the university president, company CEO, or faith-based community leader.
Hope and dignity are the medicines that will get us through the pandemic. They are also the remedies to impact the concerns wrought by the stigma that will emerge after. Let’s own these concerns and promote these values.