“There have definitely been some that have tried to use [my] experience to discount the efficacy of the vaccines or to push unfounded cures on social media,” said André Gonzales, who traveled from Washington, DC, to New Mexico for a funeral in early June, and tested positive along with other vaccinated members of his family. Gonzales said he had grappled with “a lot of guilt” that he may have exposed “high-risk” family members and unvaccinated children to the virus.

“Patients definitely put a lot of emphasis on signaling to us that they had ‘done everything right’ before they got sick,” says David Putrino, a neuroscientist and rehabilitation expert at Icahn School of Medicine at Mount Sinai, who has treated a few people with breakthrough Covid-19. “I think that unfortunately there is an element of shame [or] guilt associated with getting Covid at this stage.”

People with breakthrough infections are not the first Covid-19 patients to have their stories politicized, or the first to feel guilt or shame after testing positive. But their experiences highlight some of the persistent fault lines in American attitudes toward the coronavirus right now. These cases are yet another example of the emotional toll of the pandemic, and are a frustrating reminder that the crisis isn’t over for anyone.

Patient experiences also show that while breakthrough infections are very unlikely to cause new waves of infection or overwhelm health care systems, they can still have significant ramifications for individuals, their families, and their communities — impacts that are often more difficult because they are unexpected.

There’s more to learn about breakthrough Covid-19

Breakthrough infections refer to positive tests for SARS-CoV-2, the virus that causes Covid-19, in people who were fully vaccinated against Covid-19. Severe breakthrough cases are uncommon: More than 166 million people have been fully vaccinated against Covid-19, and the Centers for Disease Control and Prevention has recorded 7,525 breakthrough cases that led to hospitalization or death.

“The incidence is relatively low,” said Jessica Malaty Rivera, an infectious disease epidemiologist. “But whatever we know as breakthrough data is absolutely an undercount.” The CDC says as much on its website, because reporting from health providers is voluntary and isn’t comprehensive.

“We still need more data on how common breakthrough infections are — and the CDC should be reporting this data,” added Julia Raifman, an assistant professor of health policy at Boston University. The CDC is not currently counting mild breakthrough cases of Covid-19, and Raifman suggested this absence of data could be contributing to public confusion about the level of risk facing vaccinated individuals.

As Katherine J. Wu has written in the Atlantic, the ability to develop Covid-19 is not what separates vaccinated and unvaccinated people. “The choice isn’t about getting vaccinated or getting infected,” Wu wrote. “It’s about bolstering our defenses so that we are ready to fight an infection from the best position possible.” If public health guidance suggests otherwise, it could run the risk of creating false expectations and even stigmatizing the experience of testing positive while vaccinated.

“Vaccinated people should know that their chances of infection are lower than those of unvaccinated people,” Raifman said. “But … infection will not be rare when there is uncontrolled transmission of Covid like we currently face.”

The stories of patients are being politicized

While stories of breakthrough Covid-19 are not representative of the majority of Covid-19 cases — they may be amplified precisely because they’re seen as surprising — many have gone viral on social media, and some have become fodder for commenters making inaccurate arguments against vaccines. Tweets from people with breakthrough infections garner thousands of likes and retweets, and responses range from supportive to skeptical. It can be overwhelming for patients who were not expecting a heated backlash.

“I could not believe how my post blew up,” said Melinda Simmons, a biology professor in Florida whose tweet about her case prompted more than 1,000 comments. “I tried to block the trolls and people using my post as an argument against vaccination, but I gave up after a while. I was sick, and dealing with the responses was exhausting.”

People who have been vaccinated respond with a wide range of reactions, too. “Some vaccinated people seem to respond with very high anxiety and fear, and talk about completely locking down,” said Mike McHargue, a Los Angeles-based author and media founder who tweeted about his breakthrough case of Covid-19 in early July. “Other vaccinated people say my case is a fluke, and they won’t tolerate masks, distancing, or other mitigations.”

Miranda said one person told him his illness was a consequence of “taking risks along with enjoying our freedom.” He felt this comment was political, and declined to respond. “I strongly believe that public health matters should never be politicized,” he said.

There’s still a gap between expectation and experience

Breakthrough infections encompass a wide variety of different experiences. Some are asymptomatic, as Vox’s Dylan Scott has reported. Most will not result in hospitalization. Non-hospitalized cases may be considered either mild or moderate depending on a patient’s symptoms, according to the National Institutes of Health.

However, cases that are defined as mild sometimes do not feel mild to patients, especially for vaccinated people who may be surprised to develop Covid-19 at all. “Medically, I had a ‘mild’ case, but nothing felt mild about it,” said McHargue. A month after the onset of his symptoms, he is still experiencing fatigue and tinnitus. A recent study in Israel found that some vaccinated health care workers with breakthrough infections developed symptoms that lasted for more than six weeks.

“Even if a symptomatic individual does not get hospitalized, [they] can still experience ‘long hauler’ symptoms and be affected in the long run,” Erik Blutinger, an emergency physician at Mount Sinai Queens, told Vox. He said it’s important to analyze all breakthrough cases, regardless of their severity, at least until scientists learn more.

Gonzales and his mother are also both dealing with lingering symptoms, including fatigue, body aches, and a cough. Gonzales had to delay his start date at his new job as a result. Like other Covid-19 patients with lasting symptoms, he and McHargue said that their illness had impaired their ability to work.

“Covid-19 took away 10 days of my life — 10 days of experiences that I’ll never get back,” Miranda said. “But most importantly, I missed the moment of saying goodbye to my uncle before he passed.” Because Miranda was sick with Covid-19, he was unable to visit the hospital where his uncle was being treated for a cardiac event. Other patients described difficulties quarantining from unvaccinated children in their households.

Recommendations for vaccinated people may continue to evolve as scientists and policymakers learn more about breakthrough infections. Rivera, the epidemiologist, echoed CDC guidance that most vaccinated people can avoid routine testing if they have not been exposed to the virus. She and Raifman, of Boston University, both agreed with the CDC in saying that vaccinated people in the US should wear masks indoors.

But Rivera voiced some uncertainty about the CDC’s current recommendation on exposures — that vaccinated people who come into contact with someone who has Covid-19 do not need to quarantine if they don’t exhibit symptoms. This is arguably too lax, she said. “I don’t think that it makes sense for people who have had a confirmed exposure to not pre-emptively … stay home.”

People with breakthrough infections remain grateful for vaccines

Because SARS-CoV-2 is still a novel virus, those infected are sometimes the first to report new experiences, and being first can exacerbate feelings of anxiety or shame. Covid-19 patients seem especially likely to be met with surprise or disbelief when their experiences are new or understood to be uncommon.

When Selby first became symptomatic, she took a rapid test, which came back negative. When her illness persisted, she asked family, friends, and health care workers for advice. “Everyone kind of had the same response: ‘I’m sure you’re fine, you’re vaccinated,’” Selby said. “The physician’s assistant seemed to imply I was overreacting, asking for another test.”

When Selby tested again and the result was positive, even she was surprised: “I had let myself be convinced I was overreacting.”

Four of the people with breakthrough cases who spoke to Vox said they had received surprised reactions from health care workers, and some spoke of conflicting advice. “The staff at the doctor’s office did seem spooked by us, mRNA-vaccinated people with Covid,” said McHargue. Gonzales said he sought care for his symptoms at an emergency room, where he was told he did not need to be tested because he was vaccinated. He later heard from his state health department, which disagreed and told him he needed to be added to the contact tracing database.

Since confirming her breakthrough infection, Selby has used social media to spread awareness about her experience. She thinks the message that breakthrough cases are “super rare” contributed to the doubt and disbelief she encountered from others.

In the process of sharing her story, Selby learned of other breakthrough cases in her wider network, and the knowledge has affirmed her own experience. “Obviously, it’s upsetting to hear other people were sick,” Selby explained. “But it was reassuring, in a twisted way … I kind of felt like my worries were validated.”

Selby is glad she got vaccinated, and the doctor who treated her breakthrough case thanked her for doing so. Other people with breakthrough infections echoed this sentiment.

“I think it’s possible … that I would be on a ventilator right now without the vaccine,” said McHargue. From the moment he tested positive, he was confident that he and his family would be okay, thanks to their vaccination status.

Gonzales was similarly grateful. “Being vaccinated is what saved not only my life, but the lives of my family as well,” he said. “What I went through, and what I saw my family go through, was difficult enough. I don’t want to imagine what it would have looked like had any of us been unvaccinated.”

Correction, August 11, 4:20 pm: A previous version of this story incorrectly stated that Michael Miranda is a parole officer. He is a probation officer.

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