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etting COVID can make a person feel a variety of emotions: anger, fear, frustration. But many folks have reported experiencing another kind of reaction to their own positive test result: a feeling of shame.

For those who haven’t experienced it themselves, the idea of being ashamed at getting COVID — during a literal pandemic, no less — might seem odd. And yet when we asked KQED audiences for their stories, “COVID shame” was something that many people told us they couldn’t help but feel.

“I cried the second I saw the pink line,” one audience member told KQED. “I felt as if I failed myself and society.” Like most people who sent us their stories, they asked to remain anonymous.

“I thought I would be a disappointment to [my staff], I thought I’d let them down,” a person who worked in hospitality wrote. Another person said social media had been compounding their feelings of guilt and shame after testing positive.

“I saw a friend’s post of a small, masked gathering on Instagram,” they wrote. “The caption said something about how no one in the photo had ever had COVID because they took ‘the right precautions.’ Ouch.” The post, they wrote, “made me feel like I caught COVID because I hadn’t [taken precautions].”

Not even medical professionals are immune from feeling shame at testing positive. UCSF physician Marissa Raymond-Flesch told KQED about her experience of catching the delta variant “after being incredibly COVID-cautious for the entire pandemic.”

“It felt,” wrote Raymond-Flesch, “like a moral failing on some level — like there would be an assumption that I took an unnecessary risk, or did something to get myself sick. It helped me to understand how much judgment people harbor about those who get COVID.”

And judging from KQED’s audience responses, you don’t have to get COVID to feel COVID shame. “If I ever do test positive, I know it will feel like I did something wrong,” one anonymous audience member said. “I feel a lot of shame and anxiety related to any minor sniffle, even when I test negative,” said another.

Of course, this isn’t everyone’s COVID reality. There are many people who continue to feel fear or anxiety rather than shame when they test positive — people more concerned about lost wages, or being immunocompromised and high-risk, or not having access to reliable health information in languages other than English, than being ashamed of what others might think of them.

But it begs the question: How did we get to a point where contracting the disease that’s been raging at pandemic level across the globe still feels, for some, like a personal failing?

Why talking about COVID can be like talking about sexual health

There’s a long history of shame — and shaming — when it comes to viruses and disease. Especially when it involves contagion.

This history is something that’s often most keenly felt in the world of sexual health and sexually transmitted infections. Bay Area teacher and sex educator Julia Feldman said the parallels between how we talk about COVID and conversations about sexual health have been there since the start of the pandemic.

The major overlap, said Feldman, is that “from the beginning of the pandemic, we’ve been taught that it’s our responsibility to stay healthy, and that we can do things to do that.”

The “major misconception” underlying feelings of shame in regard to both sexual health and COVID, she said, is that “if we do ‘all the right things,’ we won’t get it. And that the logical extension of that is, well, if you do get it, it must mean you’ve done something wrong.”

In this environment, you don’t need to have caught COVID to feel like you’re constantly teetering on the precipice of shame. Despite never having tested positive, audience member Rachel S. said she experienced intense “guilt and shame” just waiting for test results anytime she felt she might have COVID symptoms — and quizzed herself constantly about what she might have done “wrong”: “‘Was it from when I sat at that outdoor patio the other day? Or visited my parents last week? I knew I shouldn’t have!’ etc.”

Audience members also reported feeling intense shame and guilt about the ripple effects their positive diagnosis created for others in their lives — the exposure they’d caused family members, or the impact on their work.

“I held my baby niece the day before I tested positive. I’d also met my sisters, parents, and my 3-year-old had gone to preschool,” wrote one audience member. “I was so upset that I had exposed so many people, some vulnerable without being able to be vaccinated, and hadn’t just stayed home.”

Exposure, close contact, wearing protection, getting tested, vaccination: It’s striking how much of our language around COVID mirrors the vocabulary of sexual health. (One anonymous audience member even referred to her COVID diagnosis — and how she felt others would judge her for it — as “my Scarlet Letter.”)

And of course, shame and shaming around infection is nothing new.

“As a tool for social control, shame around sexuality and sexual health has existed as long as we know,” said Feldman. “Because especially our current society is so deeply impacted by purity culture from religion.”

‘It’s our job to not get sick’

The idea of personal wrongdoing always being to blame for infection — whether it’s COVID or an STI — is just not accurate.

“Every doctor will tell you that you can take every precaution and use condoms, get tested regularly, communicate as much as you can with your partners, and you can still contract an STI — even if you do all ‘the right things,'” said Feldman.

Yet notions of shame persist around sexual health and COVID in ways they don’t with the common cold, or a bout of flu, precisely because of that idea of being well behaved enough to escape infection. In contrast to those winter bugs, with STIs and COVID Feldman said “we’re taught that it’s our job to not get sick.”

Several audience members told KQED they actually felt more ashamed to get COVID because they’d been so cautious previously — and been vocal about their caution — as if their positive test was some kind of divine punishment for their hubris, inviting judgment upon them.

“I was ashamed because I felt like I would be judged, having been vocal about wearing masks and getting tested regularly on my social media,” one person told us. “It felt like a failure.”

Another audience member, Nicole, said that after two years of working from home, masking, rarely socializing and “being critical of others who weren’t doing everything ‘right’, I got it anyway.”

“Of course it was embarrassing to have the thing I had considered so avoidable, that only ignorant or selfish people got,” wrote Nicole.

In some cases, the sense of responsibility felt by people at getting COVID can have truly devastating consequences. Earlier this month, the Los Angeles Times featured the story of Anthony Michael Reyes Jr., a 17-year-old who contracted COVID at school and brought it back into his LA household.

After his father was placed on a ventilator and died from the disease, Reyes is reported as having spoken of blaming himself for getting COVID at school and infecting his father. Almost three months after his father’s death, Reyes took his own life.

‘Not a moral failing’

If a person tells themself that getting COVID can be a moral slipup, that also confers a kind of goodness — superiority, even — on the people who haven’t gotten it yet.

This notion of avoiding COVID if you make “the right choices” can also lead to framing ourselves (and other people) as accordingly trustworthy or not, Feldman said.

That’s something echoed in the story of one anonymous audience member who told us how they contracted COVID from a house guest whose assurances of having tested negative earlier turned out to be false.

“I felt ashamed of myself for trusting blindly and not taking enough precautions to protect myself,” said the commenter. “I should have used my judgment.”

When a person is surrounded by messages that COVID only happens to the careless and the reckless, actually getting COVID can create a kind of jarring dissonance in the mind, between the kind of person someone thinks themselves to be (cautious, COVID-negative) and the kind of person a positive test “reveals” them to be. Another audience member told us of her “mistake” sharing an unmasked indoor meal with another person, which led to her own positive COVID test.

“Why did I trust this young man? … The guilt and shame I felt was intense,” she said. “I had prided myself on being a responsible person and very cautious about COVID.”

“When we infuse so much meaning into these concepts, we’re really doing ourselves a great disservice,” said Feldman. “Because it’s not a moral failing if you get sick. And that’s kind of the messaging that people have been given from the start of the pandemic: that if you get it, you’re failing.”

‘Accountability without shame’

Of course, not everyone thinks shaming some people who get COVID is necessarily a bad thing. (As one Twitter user responded to KQED’s callout about COVID shame: “If they didn’t take precautions or wear a mask, or get vaccinated, and get COVID then they absolutely should feel guilty! Only those taking precautions who still contract COVID should feel guilt free.”)

It’s easy to find people who think those who are reckless — with their socializing, with not getting vaccinated — should be shamed. But as a tool for change and a public health mitigation, shame doesn’t actually work, said Feldman.

“The data shows us that fear and shame are not effective strategies,” she said.

Feldman wants to see us talk less in terms of shame and more about accountability: for the choices we make, and how they affect others in our lives. Many of us default to binary thinking, she said, because of how complex these conversations can be. And much of sex education historically has not been “able to hold space for those complexities, for teaching people how to navigate risk and also understand personal and collective risk — and when your risk can impact other people.”

“When it comes to sexual health, that’s one of the few areas where our personal decisions about risk impact other people’s risk,” Feldman said — a dynamic with clear parallels to COVID. Yet rather than rushing to feel or impart shame, “can we hold responsibility for making informed decisions for being communicative about our risk?” asked Feldman, so that “we’re also not shaming people when it turns out that the risks they took didn’t pan out?”

“Can we have accountability without shame?” she asked.

A painful history

In a place like the Bay Area, the notion of feeling shame for contracting a contagious disease with high community spread — or being made to feel ashamed for it — can’t help but raise difficult memories of the height of the AIDS epidemic.

Jesus Guillen is an independent consultant on HIV and aging. For him, the shame he’s seeing people exhibit around their positive COVID results is a reminder that when it comes to contagious disease, “after 40 years of the first HIV/AIDS cases, we still have so much stigma and discrimination.” And shame, said Guillen, “will not be there without the stigma and discrimination.”

An important connection Guillen draws between HIV/AIDS and COVID is that still-pervasive notion that a person can contract either condition “because you are not being careful.” In reality, of course, “it takes only one person, one distraction,” he said.

As the San Francisco-based founder of the online support network HIV Long Term Survivors, Guillen’s focus is on the kinds of practical and emotional assistance that people living with HIV/AIDS receive — and what they’ve historically been denied. For Guillen, when it comes to COVID, a glaring indication of the sheer lack of support your average person receives is found in the absence of post-diagnosis follow-up, or even counseling, for those who test positive.

Guillen said a question he often gets is, “How soon should I seek out a therapist after my HIV diagnosis?” Over the decades, his answer remains the same: “The first day.” And while AIDS and COVID are of course markedly dissimilar as diseases in many important ways, Guillen said he’s nonetheless struck by the parallels in the all-too-frequent silence at the point of diagnosis.

Unless you’re receiving your test results from your regular health care provider, who is more likely to offer a follow-up treatment plan, a positive COVID test result from a provider or laboratory isn’t usually followed by an offer of professional emotional support, or guidance navigating next steps. For folks testing positive through rapid at-home antigen tests, that absence of support is likely to be felt more strongly. And Guillen suggests that for many, this — the absence of support at diagnosis — is when a lack of communication sets in, and the shame can soon follow.

Knowledge levels around COVID and how it affects the body (specifically, how it might affect yours) also wildly vary from person to person, said Guillen. To generalize about how much the average person knows about the coronavirus is “just a huge mistake,” he said, and it’s something that’s only exacerbated by a lack of support at the point of diagnosis.

After all, if a person has had access to reliable, accurate information about COVID and to a regular health care provider to make them aware of their own risk levels, then that person is more likely to weigh their positive test result with the facts. For others who lack that access, getting diagnosed with COVID can feel like facing something utterly terrifying — and shameful.

Shame and silence

The thing about shame is that it’s a deeply lonely place to be. So perhaps it’s no surprise that the pandemic — a time of frequent isolation, whether you’re COVID-positive or not — has provided such fertile ground for shame.

“I cried every day in isolation,” one anonymous audience member told KQED.

Shame also feeds off silence. Feldman said it’s telling that many folks who get COVID often wait to reveal their diagnosis to their wider circles.

“A lot of people aren’t announcing that they have tested positive until they’ve recovered, and can show on the other side that they are strong — and that it didn’t affect them negatively,” she observed.

In his work with people living with HIV/AIDS, Guillen has seen too many patients feel like they have to hide a diagnosis to all but a select few. “The reality is that every time that we hide it, of course, then we are not comfortable with ourselves,” he said.

Feldman was struck that even New York Rep. Alexandria Ocasio-Cortez — a public figure noted for her radical transparency and vulnerability online — only shared her own positive COVID test after her recovery. Whether they realize it or not, Feldman said, by waiting to disclose their diagnosis after the fact, many people are sharing “only in light of their proof that they are healthy enough to come out the other side.”

Shame is also practically unhelpful during COVID — the secrecy that it feeds can have a chilling effect on transparent communication. In Dec. 2021, Crystal Clark, a psychiatrist and associate professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, said she’d observed how COVID shame was even resulting in some people not getting tested.

“They believe that they have been doing everything as they should, and feel like, ‘I can’t have this,'” said Clark. “They avoid finding out, because if they do, it’s that guilt and shame that goes with that.”

Feldman gave the example of a person who chooses to dine indoors, but also chooses to tell their elderly family members that they’ve done so “so they know the risks that I took, and will probably choose to be outdoors for the next week because that was a risk I took.”

“But there’s nothing shameful about taking that risk,” she stressed. “If there’s anything shameful, it would be about taking that risk and then not being transparent about the people that you’re potentially endangering.”

‘Felt like I wasn’t doing my part’

Throughout the pandemic, official public health language has consistently laid emphasis on the role of the individual in fighting COVID: stop the spread, flatten the curve, do your part. It’s perhaps no surprise then that in comments from KQED’s audience, the idea of personal responsibility — and its often-crushing weight — looms so large.

“It’s like I felt I wasn’t doing my part as well as I could have to help end this pandemic,” wrote Rachel S. Another anonymous audience member wrote of their guilt at feeling “like I could have made better choices (even though we don’t go anywhere or travel.).”

Bad choices, good choices, never being quite sure which is which: Shame may thrive within silence and stigma, but it also feeds off isolation and confusion — two things that have been in overabundance during the pandemic.

Physical isolation has been enforced during COVID, both for people who test positive and for all of us during periods of what we’ve collectively called “lockdown” or “quarantine,” as a precautionary measure to avoid community spread. But we’ve also been isolated from reliable information — whether by being flooded with misinformation about vaccines online, or by confusion borne out of a lack of clarity around what’s safe, and what’s not.

In many ways it’s possible to see the idea that anyone would even experience shame at testing positive for COVID as an entirely predictable, inevitable consequence of the sheer amount of personal responsibility placed upon individuals over the last two years.

We’re told testing is the responsible thing to do to stop community spread of COVID, and to keep our loved ones and communities safe. And yet, as we’ve seen during the omicron surge, a PCR test with results that come back soon enough to be meaningful can be extremely hard to locate. Twenty-two months into the pandemic, you can now order four free at-home COVID tests per household from the federal government via the United States Postal Service — but that’s not nearly enough to cover a house full of roommates, or a multigenerational home.

To wear a mask is to do your part and to do the right thing, we’re told. But assistance in acquiring the right mask has been spotty at best. The first nationwide program to offer free high-quality masks launched in January 2022. For almost two years, the Centers for Disease Control and Prevention stressed wearing masks as a crucial way to slow the spread of COVID. But its guidance on which masks were safest was only updated in mid-January 2022, confirming that N95s offered “the highest level of protection.” Until now, people have largely been left to work out which mask will protect them best on their own.

When vaccines became widely available in 2021, people were told that getting their shot was the best way to protect not just themselves but their communities. Yet finding an appointment in those first weeks and months was such a complicated, frustrating process that it involved word-of-mouth tips and a degree of tech proficiency that left many people simply unable to find the vaccine they desperately wanted.

So if things go wrong — and you already carry the notion that getting COVID is somehow a personal failing — it might be easy to feel like you chose the wrong path and, because you did, you’re to blame.

‘We need a reframing’

Increasing numbers of vaccinated people have been testing positive for COVID in recent weeks due to the surging omicron variant — most of them not requiring hospitalization thanks to the effectiveness of vaccines. Could there be a silver lining to the spread of omicron, in the sense of decreasing shame by making catching COVID a more universal experience?

UCSF’s Dr. Marissa Raymond-Flesch hopes so.

“I think that any experience that becomes more and more universal becomes less shameful, and I think that’s good and wonderful,” she told KQED — but said she also hopes that COVID potentially becoming endemic isn’t the only reason to wave goodbye to the shame of a positive test. “I think that there is room to trust each other — that we are all doing the very best that we can every day — and to figure out what those trade-offs are for our own health and well-being,” she said.

But with the sheer weight of personal responsibility placed on individuals during the pandemic, set against a centuries-long backdrop of shaming around disease, can we ever truly escape the specter of shame as long as COVID is with us? Or for the next great contagious threat to public health?

“I want to believe that we can learn from our mistakes,” said Julia Feldman. “But I think it’s very similar to sexual health. You can’t learn from your mistakes without access to accurate information … I think as a society, we need a reframing.”

For Feldman, it’s not just about evolving our thinking around disease, but also “our understanding of risk and responsibility” — and learning to accept the complexity and nuances of those conversations. As a collective, she said, it’s about finding a way to “hold space” for those competing ideas: “Yes, we want to do everything we can to keep ourselves safe — and at the same time, no matter how much you tried, the reality is that there’s nothing you can do to stay 100% safe.”

“If we’re going to accept that shame does not correct people’s behavior in an effective and long-term way, what does?” Feldman asked. “I think it’s something that’s very antithetical to our cultural approach to individualism, this notion that there is collective responsibility, that my actions impact you — and that that’s not a bad thing.”

Jesus Guillen suggests that these internalized social judgments will persist as long as diseases like AIDS and COVID continue to be seen less as health conditions and more as symbols, loaded with moral and political meaning. And Guillen said that if unaddressed, our collective inability to divorce diseases from judgment will only get worse for those who contract those diseases — whatever they are.

“I really believe that if we don’t deal with the stigma and discrimination in one health issue, we will never [move] ahead with the next one,” he said.

And in the meantime, as we approach the three-year mark of the coronavirus pandemic, if someone still experiences shame as their default emotion when they test positive, UCSF’s Dr. Marissa Raymond-Flesch offers a perspective that she found personally comforting after her own positive diagnosis.

“My husband told me, ‘It’s like you’ve been standing in a hurricane for more than a year with an umbrella and you finally got wet,'” said Raymond-Flesch. “It was an incredibly helpful metaphor that I’ve shared with many patients and colleagues who have tested positive since then.”

She tells those people “that we are in the middle of a pandemic, and we are each doing the best that we can to get by, in so many ways.”