Coronavirus stigma and guilt — about getting sick or getting others sick — hurts everyone

When an illness is viewed as something shameful or somehow “your fault,” the risk of self-stigmatization is considerably higher.
Illustration of woman in mask and gloves side eyeing another woman coughing in a grocery store.
De-stigmatizing COVID-19 is a necessary early step to reducing societal anxiety.Wesley Allsbrook / for NBC News
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By Dr. Grania Brigden

While the coronavirus sweeping the globe had never been seen before by scientists, there are some aspects of the national and global response that are all too familiar and reminiscent of past efforts to combat infectious diseases.

On a positive note, we’ve seen clear and regular communication from the World Health Organization. Personal hygiene is top of mind. Testing widely, though uneven, has become a growing focus. And the need to provide sufficient and quality health care in hospitals and other sites has remained paramount. Global health and security policymakers are grudgingly inviting health experts back on the decision makers’ tables, but as we are now realizing they never should have left.

Given these stats, it is also critical that we fight back against any effort to stigmatize people affected by this new disease.

But people are still being infected — and indeed dying — at higher and higher rates. In New York, Gov. Andrew Cuomo said his state has "troubling and astronomical numbers" of people being infected. Over 200,000 Americans have tested positive and thousands have died during this rapidly unfolding pandemic. And many people just do not know their status because of a lack of a capacity to test more broadly. Given these statistics, it is also critical that we fight back against any effort to stigmatize people affected by this new disease.

It has been said over and over during this pandemic but it bears repeating: Infectious diseases do not discriminate, people do. That has been the maxim of those of us who have fought the HIV/AIDS and tuberculosis battles over the past three or four decades. And we know at the same time that stigma can be one of the most powerful barriers to delivering prevention, treatment and care to the most vulnerable, who are at the same time the most in need.

Stigma can manifest itself in many ways. It can be something very direct, like when a person with a disease or known to have had a disease experiences discrimination. Stigma can lead to continued fear as people with a disease anticipate discrimination. Experiencing a disease can also lead to self-stigma, associated with the feelings of guilt and shame of having a disease that you may have unwittingly passed on to loved ones, along with fears of how other people will perceive that.

This last one is very important in a pandemic like this one, where the disease in question is both highly contagious and sometimes asymptomatic. It’s good to be conscientious of others and to try as hard as possible to keep yourself and everyone around you safe. But given the rates of infection, it’s also possible many people have already infected others inadvertently through no fault of their own.

The way that society views a disease affects how a person with that illness feels and behaves. When an illness is viewed as something shameful or somehow “your fault,” then the risk of self-stigmatization is considerably higher.

How do we gauge how supportive our society is to various illnesses?

The first place to start is the language used. Think about the language that we use for people with cancer. We say they are “fighting cancer.” When they survive, they “beat cancer.” These words are positive and empowering and designed to show people affected by cancer that society has their back.

We know that stigma reduces the likelihood that people with symptoms will seek care, drives vulnerable groups underground, reduces the impact of prevention measures, and ultimately increases transmission rates.

We are still in the early days of the COVID-19 pandemic, and so language is still evolving. But it is disappointing to already hear and see the media, politicians, news outlets and even some health professionals casually using terms such as ”the Chinese virus,” “COVID suspect,” or, perhaps worst of all, “a super-spreader.” These words dehumanize and isolate particular groups in society, and they tell people affected by this new illness that society, rather than supporting them, actually blames them for a larger crisis. Even some of the memes circulating on social media can carry the pernicious effect of appearing to be judgmental about people being placed in isolation because they've been sneezing, or coughing.

When it comes to the fight to eliminate tuberculosis and HIV, we know that stigma reduces the likelihood that people with symptoms will seek care, drives vulnerable groups underground, reduces the impact of prevention measures, and ultimately increases transmission rates.

In some areas though, we have learned from our experiences and mistakes. Unlike TB, where it took decades for the impact of language on real and perceived stigma to be recognized and for appropriate language to be developed, the World Health Organization has already released language guides for media reporting on COVID-19.

We should all keep in mind that every time we refer to an individual COVID-19 “case,” as benign as it might sound, we’re actually making it harder to remember that we’re talking about actual people affected by this disease — our families, neighbors, colleagues and friends.

To be sure, we all have a responsibility to do our part to reduce the spread of the coronavirus, including social distancing, frequent hand-washing and disinfecting surfaces. These are still relatively early days for understanding the full complexity of the virus, and that feeling of not knowing all the ways it can spread can cause considerable anxiety. De-stigmatizing COVID-19 is a necessary early step to reducing societal anxiety and pushing for a measured response. Language matters. And the people affected need our support, not our judgment.