Shame And Illness Have A Long History — Pulling Them Apart Could Make It Easier To Tackle COVID-19
Experts have a lot of recommendations to protect against the spread of COVID-19, but a person can contract the virus through no fault of their own. Still, they may still second-guess themselves or feel judged by others. Did they do enough? Were they masking properly? Washing their hands enough? Gretchen Case is chief of the program in Medical Ethics and Humanities at the University of Utah, and studies how people make sense of illness. She said shame and disease have a long, intertwined history.
This interview has been edited for length and clarity.
Caroline Ballard: How does shame play out in a pandemic?
Gretchen Case: Whenever we're talking about infectious diseases, these very, very old ideas of clean and dirty come up. That the disease is dirty and we are clean. I've even heard people use language in this pandemic, [like] if a space is “clean” or something is “clean.” Shame comes up when we feel like we are dirty. That's in religious texts. Anthropologists have studied that in many cultures. And I will just go ahead and say you should not feel shame for being ill. Illness itself is not shameful. It is a condition the body can be in.
CB: What are some historical examples of this?
GC: I think AIDS — especially in the very early years when we weren't at a place where we could think of AIDS as something you could survive — many people were shamed for having an illness. It turns out that shame was maybe as harmful as anything else, because when people feel shame or they feel that they are being shamed, they might not seek out health care. That means they come in sicker, [and] it might be harder to help them. They might not let people know that they are ill.
There are so many reasons that any epidemiologist or any public health worker will tell you shame is not the answer to any kind of infectious disease outbreak or pandemic, because all it does is tell people ‘Don't talk about this.’ What we need more than anything is to have information, to have people sharing information, and shame gets in the way of that.
CB: How do you see this playing out with people diagnosed with COVID-19?
GC: When someone gets sick, there's a potential for someone to question themselves or to others. How did they get sick? What did they not do right to keep themselves from getting sick? But you can't always keep yourself from getting sick. The virus doesn't think like we do and it doesn't look for the “bad” people to infect. It looks for bodies to infect, and I think that can be hard to remember.
CB: The messaging around COVID-19 has been that you have to take some kind of personal responsibility — by social distancing, [wearing] masks, washing your hands. There are things that you need to do, and I think then the message becomes, if you get COVID, it's because you didn't do these things. Is there a way in which shame can actually be helpful in controlling a pandemic?
GC: So I think that's an excellent and really complex and probably controversial question. But shame exists and persists in humans because in some ways it is very useful. We very early on teach our children that they need to wear clothes. There are a lot of ways that shame is very powerful for good or for bad. I think the problem that we're facing right now is how do you share with people how important it is to be cautious, but also not blame people who do get sick. [Just] because someone gets sick doesn't mean that they necessarily did something shameful. That's very hard to pull apart, though.
CB: Is there another word that we could use instead that more accurately captures that balance of wanting to do these things to keep yourself safe, but if somehow you get the virus, that doesn't mean you're a bad or, as you said, “unclean” person.’
GC: The word that comes to my mind is “protection.” So protection of self and protection of community. How can we protect each other? How can we care for each other? How can we care about our own bodies and the bodies of others? How can we be aware of where we are, who we are with, what we are touching [and] what we are breathing?
Can we be perfect about that? No. But it's absolutely reasonable to take precautions, to care for ourselves and to care for other people. If we do that, if we're aware not only of ourselves and of others, then when we do have people who get sick, we are able to turn that care and turn those resources to those who need it.