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COVID infection can cause a user to feel a variety of emotions: anger, fear, frustration. But many other people reported feeling another kind of reaction to their own positive outcome: a sense of shame.
For those who haven’t experienced it themselves, the thought of being ashamed of contracting COVID, a literal pandemic, no less, may seem strange to them. And yet, when we asked the KQED audience about their stories, the “COVID shame” was something many other people told us they still couldn’t help but feel.
“I cried the moment I saw the pink line,” one member told KQED. “I felt like I had failed myself and society. “Like many others who sent us their stories, they asked to remain anonymous.
“I think it would be a sadness for [my staff], I think it would disappoint them,” wrote one user who worked in the hotel business. Another user said social media worsened their feelings of guilt and misfortune after a positive.
“I saw a friend’s message about a small mask collection on Instagram,” they wrote. “The caption said about the fact that no one in the photo had had COVID because they had taken ‘proper precautions. ‘The message, they wrote, “made me feel like I had stayed with COVID because I hadn’t [taken precautions]. “
Even medical professionals are not immune to the misfortune of testing positive.
“It seemed,” Raymond-Flesch wrote, “like an ethical flaw at some point, as if it was assumed that I took a risk or that I did something that made me sick. It helped me sense how much other people were judging by those who get COVID. “
And judging by the KQED audience responses, you don’t want COVID to feel the misfortune of COVID. “If I ever test positive, I know I’ll feel like I did something wrong,” said one unnamed audience member. I feel a lot of embarrassment and anxiety similar to any minor cold, even when my check is negative,” said another.
Of course, this is not everyone’s COVID reality. Many other people continue to feel worry or anxiety that embarrasses when they test positive: other people who are more involved in wasting their salary, or being immunocompromised and at high risk, or not having access to reliable fitness data in languages other than English, than dishonoring themselves for what others may think of them.
But the question arises: how do we get to a point where contracting the disease that wreaks havoc on the pandemic hotspot around the world still feels, to some, like a failure?
There is a lot of misfortune – and misfortune – when it comes to viruses and diseases. Especially when it comes to contagion.
This story is something that is felt with the utmost intensity in the world of sexual fitness and sexually transmitted infections. Julia Feldman, a Bay Area instructor and sex educator, said the parallels between the way we communicate about COVID and conversations about sexual fitness have existed from the beginning. of the pandemic.
The main overlap, Feldman said, is that “since the beginning of the pandemic, we’ve been taught that it’s our duty to get back to being healthy older and that we can do things about it. “
The “big misconception” of emotions of misfortune when it comes to sexual fitness and COVID, he said, is that “if we do everything right,” we may not get it. And that the logical extension of that is, well, if you understand it, it will have to mean that you’ve done something wrong. “
In this environment, you don’t want to have COVID trapped to feel like you’re constantly teetering on the edge of the precipice of shame. Although she never tested positive, public member Rachel S. said he felt intense “guilt and shame” just waiting for the verification effects whenever he felt he might have COVID symptoms, and constantly wondered what he could have done “wrong”: “Was it when I sat on that outdoor terrace the other day?Or that I visited my parents last week “I knew I shouldn’t have!”etc. “
Members of the public also reported feeling intense shame and guilt for the ripple effect their positive diagnosis created for others in their lives: the exposure they had caused to members of the family circle or the effect on their work.
“I held my niece the day before I tested positive. I also met my sisters, my parents and my 3-year-old daughter had gone to kindergarten,” one audience member wrote. people, some vulnerable without being able to be vaccinated, and that I was not left alone at home. “
Exposure, close contact, protection, screening, vaccination – it’s amazing how our language about COVID reflects the vocabulary of sexual health. is – “my scarlet letter”).
And of course, the misfortune and dishonor around it is nothing new.
“As a form of social control, the misfortune around sexuality and sexual fitness has been around for as long as we know,” Feldman said. “Because our current society, in particular, is so deeply affected by the culture of the purity of religion. “
The concept that non-public wrongdoings are to blame for the infection, whether it’s COVID or an STI, is simply not accurate.
“All the doctors will tell you that you can take all the precautions and use condoms, get tested regularly, as much as you can with your partners, and you can still get an STI, even if you do all the ‘good things. ‘”says Feldman.
However, notions of misfortune persist around sexual fitness and COVID in a way that does not occur with colds or flu, precisely because of this concept of behaving well enough to escape infection. Unlike those winter bugs, with STIs and COVID, Feldman said, “I reaught that it’s our job not to get sick. “
Several members of the public told KQED that they were more embarrassed to contract COVID because they had been so cautious before, and had expressed caution, as if their positive check was some kind of divine punishment for their pride, inviting their judgment.
“I was embarrassed because I felt like I was going to be judged, after talking on my social media about wearing a mask and getting tested,” one user told us. “It was like a failure. “
Another audience member, Nicole, said that after two years of running away from home, masking myself, socializing rarely and “criticizing others who weren’t doing everything ‘right,’ I still understood. “
“Of course, it’s embarrassing to have what I had thought was so avoidable, that only other ignorant or self-centered people had,” Nicole wrote.
In some cases, the sense of duty felt by other people with 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 him back to his home in Los Angeles.
After his father put on a ventilator and died from the disease, Reyes allegedly talked about blaming himself for contracting COVID at school and infecting his father. Almost 3 months after his father’s death, Reyes committed suicide.
If a user thinks that contracting COVID may be an ethical mistake, it also confers a kind of goodness – superiority, even – over other people who don’t already have it.
This perception of avoiding COVID if “the right decisions” are made can also make us (and others) trustworthy or not, Feldman said.
This is something that echoes the story of an anonymous member of the public who told us how he caught COVID from a guest in space whose assurances of having tested negative in the previous test turned out to be false.
“I was ashamed to blindly trust myself and not take enough precautions to protect myself,” the commentator said. “I have used my judgment. “
When a user is surrounded by messages that COVID only happens to the unwary and reckless, contracting COVID can create a kind of discordant dissonance in the mind, between the type of user they think they are (cautious, COVID-negative) and the type of user a positive check “reveals” that they are. Another audience member told us about his “mistake” of sharing a meal inside without a mask with another wearer, which led to his own COVID positive check.
“Why did I accept as true with this young man?. . . The guilt and misfortune I felt was intense,” he said. “I was proud to be a guilty user and very cautious about COVID. “
“When we infuse those concepts with so much meaning, we’re hurting ourselves,” Feldman said. “Because it’s not an ethical failure if you get sick. Start of the pandemic: that if you get it, you fail. “
Of course, not everyone thinks that shaming other people who get COVID is necessarily a bad thing. (As one Twitter user responded to KQED’s call about covid shame: “If they haven’t taken precautions, haven’t worn a mask, or haven’t been vaccinated, and they’ve been vaccinated against COVID, they definitely feel guilty!Only those who are taking precautions and are still contracting COVID feel guilt-free. “)
It is easy to find other people who think that those who are reckless, with their socialization, without getting vaccinated, deserve to be dishonored. But as a tool to replace and mitigate public welfare, dishonor doesn’t work, Feldman said.
“Knowledge shows us that worry and misfortune are effective strategies,” he said.
Feldman needs us to communicate less shame and more responsibility: for the possible choices we make and how others behave in our lives. Many of us adopt binary thinking by default, he said, because of the complexity of those conversations. And much of sex education has never been “able to make room for those complexities, teach other people how to handle threats and also perceive private and collective threats, and when their threat may affect other people. “
“When it comes to sexual health, this is one of the few spaces where our non-public decisions about threats have an effect on the threat of others,” said Feldman, a dynamic with transparent parallels with COVID. However, instead of rushing to feel or dishonor, “can we take on the duty to make informed decisions to be communicative about our threat?” asked Feldman, so that “we also don’t dishonor other people when it turns out that the threats they made didn’t materialize. “
“Can we be ashamed of accounts?” she asked.
In a position like the Bay Area, the thought of being embarrassed or embarrassed about contracting a contagious disease with a strong network of spread can revive misleading memories of the height of the AIDS epidemic.
Jesús Guillén is an independent representative on HIV and aging. For him, the embarrassment he sees other people protesting its covid-positive effects is a reminder that when it comes to contagious diseases, “after 40 years of the first cases of HIV/AIDS, we still have a lot of stigma and discrimination. “And the misfortune, Guillen said, “won’t be there without the stigma and discrimination. “
One link Guillén makes between HIV/AIDS and COVID is this still widespread perception that a user can have either condition “because they’re not careful. “Actually, of course, “it only takes one user, one distraction,” he said. .
As the founder of the San Francisco-based online help network HIV Long Term Survivors, Guillén focuses on the types of practical and emotional assistance that other people living with HIV/AIDS get, and what they have been denied. For Guillén, when he comes to COVID, an obvious indication of the lack of help the average user gets is the lack of post-diagnosis follow-up, or even counseling, for those who test positive.
Guillén said one query she receives is, “How long do I want to see a therapist after I’m diagnosed with HIV?Over the decades, his answer remains the same: “The first day. “others as diseases in many vital ways, Guillén said that, however, he was impressed by the parallels in the silence all too frequent at the time of diagnosis.
Unless you get your testing effects from your usual health care provider, who is more likely to offer a follow-up treatment plan, a positive COVID test result from a provider or lab is usually not followed through a professional offer. emotional help or tips for navigating the next steps. For other people who test positive through immediate antigen testing at home, this lack of help is likely to be felt more strongly. And Guillén suggests that for many, it is: the lack of help at the time of diagnosis: that a lack of communication is established and that misfortune will probably soon follow.
Levels of wisdom about COVID and what the framework looks like — in particular, what yours might look like — also vary greatly from user to user, Guillen said. Generalizing about what the average user knows about the coronavirus is “just a big mistake,” he said. that said, and it is everything that is only exacerbated by lack of help at the time of diagnosis.
After all, if a user has had access to reliable and accurate data about COVID and a normal physical care provider so that they are aware of their own levels of risk, that user is more likely to weigh their positive test result against the facts. For others who don’t have that access, being diagnosed with COVID may seem like they’re dealing with something scary and embarrassing.
The thing about shame is that it’s a deeply lonely place. So it’s no wonder that the pandemic, an era of common isolation, whether you’re COVID positive or not, has provided such fertile soil for misfortune.
“I cried each and every day in isolation,” an anonymous member of the public told KQED.
Shame also feeds on silence. Feldman said it was telling that many other people with COVID were waiting to reveal their diagnosis to their wider circles.
“Many other people don’t advertise that they tested positive until they recover, and they can show in the other aspect that they are strong, and that it hasn’t affected them negatively,” he said.
In his dealings with others living with HIV/AIDS, Guillén has noted that many patients feel compelled to hide a diagnosis from all but a privileged few. “The truth is that every time we hide it, of course, we are not careful with ourselves,” he said.
Feldman noted that even New York Rep. Alexandria Ocasio-Cortez, a public figure known for her radical online transparency and vulnerability, only provided a percentage of her own COVID-positive check after she recovered. Whether they realize it or not, Feldman said, as he waited to post after their diagnosis, many other people share “only based on their evidence that they are healthy enough to get off the other side. “
Shame is also a virtually dead COVID – the secrecy it feeds can have a chilling effect on the transparency of communication. In December 2021, Crystal Clark, a psychiatrist and associate professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, said she observed how the misfortune of COVID prevented even other people from getting tested.
“They think they did everything the way they did and they say, ‘I can’t have that,'” Clark said.
Feldman gave the example of a user who decides to dine indoors, but also decides to tell older family members that he did “so they know the threats I received and probably decide to be outside next week because it’s a threat I took.
“But there’s nothing shameful about accepting that threat,” he said. “If there’s anything shameful, it would be accepting that threat and not being transparent about the other people you’re potentially endangering. “
Throughout the pandemic, the official language of public fitness has consistently emphasized the role of the individual in the fight against COVID: preventing the spread, flattening the curve, doing their part. So, perhaps it’s no surprise that in KQED’s public comments, the concept of non-public duty — and its overwhelming weight — occupies such a vital place.
“It’s like I feel like I’m not doing my part as well as I could just to end this pandemic,” Rachel S wrote. Another unnamed audience member wrote about his guilt for feeling “that he could have made something better possible. “options (even if we don’t go anywhere and don’t travel). “
Bad choices, smart choices, never knowing precisely who you are – misfortune can thrive on silence and stigma, but it also feeds on isolation and confusion, two things that have abounded during the pandemic.
COVID physical isolation has been imposed, either for those who test positive and for all periods of what we have collectively called “lockdown” or “quarantine”, as a precautionary measure to prevent it from spreading in the community. They’ve also moved away from reliable data, either because they flooded them with false data about vaccines online or because of the confusion that arises from a lack of clarity about what’s safe and what’s not.
In many ways, it’s possible to see the idea that someone would even feel embarrassed to test positive for COVID as a completely predictable and inevitable result of the plethora of private obligations imposed on Americans over the past two years.
We are told that checking is the worst thing we need to do to prevent the spread of COVID online and keep our loved ones and communities safe. enough to be meaningful can be incredibly difficult to locate. Twenty-two months after the pandemic, you can now request 4 family-compatible loose family-compatible COVID checks from the federal government through the U. S. Postal Service. But that’s not enough to cover an entire house of roommates or a multigenerational home.
We are told that wearing a mask is doing your part and doing the right thing. But the help to get the right mask has been asymmetrical for the most part productive. The first national program offering high-quality loose mask was introduced in January 2022. For nearly two years, the Centers for Disease Control and Prevention has emphasized that wearing a mask is a way to slow the spread of COVID. But its guidance on the safest mask wasn’t updated until mid-January 2022, confirming that the N95s offer “the highest point of protection. “Until now, other people have largely had to figure out which mask would best protect them on their own.
When vaccines became widely available in 2021, other people were told that getting vaccinated was the most effective way to protect not only themselves, but also their communities. Still, scheduling an appointment in the first few weeks and months is so confusing and frustrating. Procedure that referred to word-of-mouth recommendation and a degree of technological knowledge that prevented many other people from finding the vaccine they were desperately looking for.
So if things go wrong, and you already bring the idea that contracting COVID is a private failure, it can be easy to feel like you selected the wrong path and, as you did, you’re to blame.
An increasing number of other vaccinated people have tested positive for COVID in recent weeks due to the variant of omicron; most of them do not require hospitalization thanks to the efficacy of vaccines. Could there be a silver lining to the spread of omicron, in the sense of lessening misfortune by making capturing COVID a more universal experience?
Dr. Marissa Raymond-Flesch of UCSF expects it.
“I think any enjoyment that becomes more and more universal becomes less embarrassing, and I think that’s smart and wonderful,” he told KQED, but said he also hopes the potential COVID endemic is rarely the only explanation for why to say smart. “Goodbye to the pain of a positive test. ” I think it’s possible to accept as true with each other, that we all do our best on and off on both days, and perceive what the trade-offs are for us. health and well-being,” he said.
But with the weight of non-public duty imposed on Americans by the pandemic, in an age-old context of misfortune around disease, can we really escape the specter of misfortune while COVID is with us?Or for the next big risk of contagion for the public. Bless you?
“I wish we could be informed of our mistakes,” Julia Feldman said. “But I think it’s very similar to sexual health. You can’t be informed of your mistakes without access to accurate information. . . I think as a society we want a reframing.
For Feldman, it’s not just about turning our thinking about the disease, but also about “our understanding of threat and responsibility,” and learning to accept the complexity and nuances of conversations. As a collective, he said, it’s about finding a way to “reserve space” for those competing ideas: “Yes, we have to do everything we can to protect ourselves and at the same time, no matter how hard you’ve tried, the truth is there’s nothing. “you can do to remain one hundred percent safe. “
“If we settle for misfortune not correcting the habit of kind people well, and in the long run, what happens?” asked Feldman. collective responsibility, let my movements be yours, and that’s not a bad thing. “
Jesús Guillén suggests that these internalized social judgments will persist as long as diseases such as AIDS and COVID continue to be perceived less as situations of physical conditioning and more as symbols, loaded with ethical and political meaning. And Guillen said that if left untreated, our collective inability to separate illness from judgment will only get worse for those who contract those diseases, whatever they may be.
“In fact, if we don’t address stigma and discrimination in one fitness issue, we will never move forward with the next,” he said.
And in the meantime, as we move forward to the three years of the coronavirus pandemic, if you still feel embarrassed as the default emotion when they test positive, Dr. SMarissa Raymond-Flesch of UCSF shows an attitude she personally found comforting after her own positive diagnosis.
“My husband told me, ‘It’s like you’ve been in a hurricane for over a year with an umbrella and you’re wet despite everything,'” Raymond-Flesch said. “It was an incredibly useful metaphor that I shared with many patients and colleagues who have since tested positive. “
She tells those other people “that we’re in the middle of a pandemic and we’re doing everything we can to get out of it, in many ways. “
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