Fiona Lowenstein | Vox

What it feels like to get Covid-19 after being vaccinated

2021-08-12T09:45:28-04:00

A health care worker administers a Covid-19 test in Austin, Texas on August 5. | Matthew Busch/Bloomberg/Getty Images

Michael Miranda had been fully vaccinated for over four months when he tested positive for the coronavirus. “I stared at my phone for a few moments, wondering if this was a death sentence,” said Miranda, who works as a probation officer in Hawaii. After flying home from a trip to the West Coast, Miranda had experienced chills, sneezes, and a fever of 102 degrees Fahrenheit. “I immediately began blaming all the unmasked people,” he said.

Daniele Selby, a writer in New York City, grappled with similar feelings when she started to experience exhaustion, significant congestion, headaches, and a loss of smell and taste. “I was pretty shocked to learn I’d tested positive,” she said. “I am fully vaccinated and have continued to wear masks … so to do all that and still get Covid-19 and feel ill has been pretty upsetting.”

The stories of vaccinated people with “breakthrough” cases of Covid-19, which are increasingly making news, affecting policy, and spreading on social media, have some common threads. A dozen vaccinated people told Vox that testing positive brought up feelings of shock, anger, fear, and even shame. Many said they’re finding themselves at the center of heated debates about vaccines, masks, and the future of the pandemic.

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“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.

“Covid-19 took away 10 days of my life — 10 days of experiences that I’ll never get back”

“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.”

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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.

No one knows why these Covid-19 patients’ symptoms keep relapsing

2020-06-04T12:36:56-04:00

Angela Aston, a registered nurse in Texas, has not returned to work since April 23 because of Covid-19 symptom relapse. She undergoes daily temperature checks while she is at home. | Courtesy of Angela Aston

On April 11, more than a month after she first fell ill with Covid-19, Melanie Montano spritzed perfume around her bedroom to test her senses. She couldn’t smell anything.

The next morning, Montano woke up and noticed a “faintly fragrant” scent; her symptoms were finally subsiding. She had more energy for household chores, phone calls with friends, and remote work.

“I felt a massive wave of encouragement zap me back to life,” said Montano, 32, who lives in New Jersey. Then, five days later, fever, shortness of breath, and crippling gastrointestinal issues suddenly returned. “This has been the pattern, on-and-off, ever since.” Now, more than two months after she first fell ill, Montano still has symptoms.

In May, the World Health Organization announced that Covid-19 recoveries were taking longer than expected and that some patients were experiencing what appeared to be a “relapse” of symptoms. This contradicted an earlier WHO report, which stated that recovery for non-severe Covid-19 cases should only take two weeks. That guidance has been questioned, as more stories of long recoveries and lingering symptoms emerge.

It’s too early to really know what is causing symptom relapse, according to several physicians I spoke to, but almost all of them reported treating or hearing about patients who had cycling symptoms. Doctors and research scientists aren’t sure whether potential relapses mean patients are still infectious — and whether the recurrent symptoms are from other infections, viral reactivation, chronic post-viral conditions, or the virus simply taking its normal course.

For patients who think they’ve recovered from Covid-19, symptom relapses can be emotionally, physically, and financially devastating. For researchers looking for answers, the relapses remain one of the ongoing mysteries of Covid-19.

When it just keeps coming back

In researching symptom relapse, I spoke with more than a dozen patients who believed they’d experienced the return of symptoms at least once during their lengthy recoveries from Covid-19. Almost all first became sick in March, tested positive for Covid-19 within the following month, and are still experiencing symptoms today. Most sought medical care during their perceived symptom relapse(s), but few were satisfied with the advice they got.

Susan Nagle, 54, of Massachusetts, first experienced symptoms in late March and tested positive in April. A month into her illness, her symptoms began to disappear. She was finally fever-free, and her fatigue, chest pain, and shortness of breath improved significantly.

“I was starting to be able to get projects done around the house … and I realized I wasn’t walking around with my pulse oximeter,” Nagle said. Then, on May 9, Nagle’s fever returned, spiking at 101 degrees Fahrenheit. Eventually her chest pain and breathlessness came back, as well. Today, Nagle is battling symptoms that she says are “worse than they were at the start.”

Cara Schiavo, 31, of New Jersey, experienced a similar episode. She tested positive for Covid-19 on March 10 and was sick with fever, shortness of breath, and chest pain.

On week four, her symptoms started to subside. “I felt like I was getting back to my old self,” Schiavo said. “I started walking, exercising, and even told family and friends [I’d] recovered.” A week later, her symptoms returned, along with new dermatological and GI issues. “Relapse to me is a scary word,” Schiavo said.

Until the WHO’s recent announcement, it was mostly just Covid-19 survivors and patients using the word “relapse.” Until she joined an online support group where others were discussing it, Montano said, the concept of “relapse” felt like a “feverish supposition.”

Nagle said she doesn’t think of her experiences as relapses. “I think this is [just] what it means to have Covid-19,” she explained.

Not knowing if they’re infectious, relapsed patients are staying home from work and fear their illness will get worse

Many of the patients I spoke with have not been able to return to work, even remotely, because they still feel sick, and some fear that excess activity triggers their symptom relapses. None have received confirmation from doctors about whether they’re still infectious.

Montano and Schiavo sought medical care when their symptoms returned, but neither was satisfied with the answers they received. “My [primary care doctor] was less than helpful,” Montano told me. Schiavo says her doctor dismissed her symptoms as anxiety.

After three months of isolating at home, Montano relapsed again in late May, and her doctor suggested she be retested for Covid-19. She went to a drive-through testing center, where she had to self-administer a nasal swab, and received a negative result. The test result confused Montano, given her recurrent fever and other symptoms, but she has continued to isolate at home in case she is still infectious.

Daniel Kuritzkes, the chief of the division of infectious diseases at Brigham and Women’s Hospital in Boston, says that patients returning to work face “a real challenge,” given the lack of information on contagiousness. When asked whether patients like Montano should be concerned about returning to work due to their lingering symptoms, Kuritzkes said, “We don’t have a good answer for that at the moment.” The question of when to return to work is especially confusing for health care workers and others who employers sometimes require to test negative before they can resume their jobs, he added.

Angela Aston, 49, is a registered nurse in Texas who contracted Covid-19 in late March while treating a patient. She hasn’t returned to work since April 23, when she thought she had recovered from the virus, after being fever-free for 72 hours. But at the end of her shift that day, Aston noticed she was feeling “shaky and weak,” and by the following afternoon, her fever and shortness of breath had returned. “I was confused [and] anxious,” Aston told me. “I had a meltdown in the staff lounge.”

While Aston is eager to return to work, none of her doctors know if she’s actively infectious, and she says her workplace has “no idea” when it would be safe for her to return. “The [CDC’s] return-to-work guidelines say three days no fever, but those guidelines are not appropriate for me,” Aston said. “People freak out if a person with recent Covid-19 has an elevated temperature and wants to be around them. Even if it has been 10 days with no fever.” Aston has been retested three times — one negative result, followed by two positives.

Since return-to-work guidelines vary and retesting can be unreliable, many relapsed patients face confusion and financial distress.

Zackary Berger, a primary care doctor and associate professor at the Johns Hopkins School of Medicine, thinks retesting relapsed patients isn’t helpful because the test results aren’t always reliable. Some researchers estimate the rate of false negatives to be around 30 percent, due in part to discrepancies in how tests are administered and the variety of types of tests that are being used.

A recent study from South Korea suggests that patients may test positive even after they have fully recovered and are no longer infectious. Because the 285 survivors did not appear to have infected any of their 790 close contacts, and the virus in their samples did not appear to be alive, researchers now believe tests may be picking up small remnants of the virus that remain in the body even after recovery.

Berger says he sees many patients who need documentation that they’re virus-free to return to work, but his institution does not recommend retesting, given the concerns about current testing methods.

The Centers for Disease Control and Prevention recommend guidelines for health care workers returning to work after being sick, which are dependent on test availability and follow either a test-based strategy (fever and respiratory symptoms have improved, and the worker has tested negative) or a symptom-based strategy (the worker has been fever-free for 72 hours and 10 days have passed since symptoms first appeared).

Aston wants to go back to work and is frustrated by the duration of her illness. “When am I going to be free from this?” she asked. “For another 10 days? 20 days? Because my fever always comes back.”

Montano feels similarly alone. “I felt anxious, I felt confused, and I felt the need to slap on a facade that aligned with the speedy, two-week recovery period depicted in the news,” she said.

“Not a single health care provider has offered any solid, tangible guidelines on what to do next to address my issues”

Aston knows she’s lucky to still be earning wages, even though she can’t return to work. On May 4, almost two months into her illness, Montano lost her job as a post-graduate academic writing instructor, when the position was made redundant. Now, Montano’s struggling to find a new source of income, while managing her recurring symptoms.

“The job-hunting process is already work in itself, and it’s been exhausting having to push myself harder than my body is able to,” Montano said. “My first inclination is to tackle the job search with full-force, but the stark reality is my debilitating fatigue continues to impede any successful attempts to be proactive.”

Aston has found her fever often returns after she gets out of bed and moves around. One doctor she consulted suggested she stay in bed to avoid future relapses. She found this advice unrealistic. “Not a single health care provider has offered any solid, tangible guidelines on what to do next to address my issues,” she said.

For patients like Montano, Nagle, and Aston, who say they can’t see an end in sight, long-term impacts may be physical, mental, and financial. Gary Phelan, an employment lawyer in Connecticut, told me the Equal Employment Opportunity Commission has not yet decided whether Covid-19 will be recognized as a disability under the Americans with Disabilities Act because the virus is so new.

Phelan, who has represented Covid-19 patients, says “until the EEOC takes that position it will lead to more uncertainty and, as a result, … more Covid-19 victims losing their jobs or not being accommodated.”

We don’t know why people are relapsing. Here are some early guesses.

Based on the limited understanding of Covid-19, here are four possible explanations for patients who seem to experience symptom relapse. All are currently theoretical; the physicians I spoke to warned that science and medicine are still struggling to catch up with the novel virus. We don’t yet have hard evidence that any of these explanations are the true culprit, and other infections may explain symptom relapse, too.

1) The virus might be reactivating

The word “relapse” implies a resurgence of something previously dormant or nonexistent, and many patients I spoke to assumed they’re experiencing some kind of viral reactivation. According to Bernard P. Chang, an emergency physician and psychologist at Columbia University in New York City, “viral reactivation is the concept that a latent or ‘not active’ virus that is already within your system ‘awakens’ or switches to an active phase and begins causing symptoms in patients.”

Viral reactivation is well known in other illnesses, such as herpes, which remains dormant in between outbreaks. But it’s not a proven (or disproven) aspect of the new coronavirus. Kuritzkes thinks it is unlikely that SARS-CoV-2 can reactivate because the virus infects and spreads differently than ones that do so. Right now, this is a possibility, but we don’t yet have scientific data either way.

2) People might be getting reinfected

Can someone get the coronavirus, completely clear it from their system, and then catch it all over again? The answer would depend on whether people can develop immunity to the coronavirus (and if so, for how long).

Scientists and researchers are urgently trying to answer this question, as governments all over the world pin hope on a wave of immune survivors who can travel freely and revive the economy.

Recent studies on immunity bode well for the possibility, but the WHO warns there’s no guarantee. One such experiment found that rhesus macaques monkeys that were infected once were not able to be reinfected. But that’s just one study, and a lot of research remains to be done. In order to determine if humans can become immune, scientists will need to further study B cells and T cells (which help to create antibodies), improve the accuracy of antibody tests, and determine what level of antibodies confirm some level of immunity.

3) It might be the normal course of Covid-19

Jeremy Faust, an ER doctor and colleague of Kuritzkes at Brigham and Women’s Hospital in Boston, told me that mild viral symptoms often “return or get a little worse after initially recovering,” citing the common cold as one example. “Some may simply have coronavirus symptoms that come and go, but slowly improve over time, like a pendulum running out of energy,” he explained. “I can’t think of any illness that doesn’t ebb and flow in terms of symptom resolution, to some extent. So in that regard, coronavirus may be no different.”

4) Relapses might be chronic post-viral syndromes

Many of the patients I spoke with were concerned their condition might be chronic because of how long their symptoms had lasted and how regular their relapses were. “My fear is that ‘relapses’ are my new normal and this has done permanent damage,” Nagle told me. “I have yet to hear a story of someone who has had the same symptoms for the same length of time and are now back to whatever they called normal before they were infected.”

Despite some patients’ fears that their symptoms will never end, Kuritzkes is optimistic. He urges people facing nonlinear recoveries to “not get discouraged” though they should speak to a health care provider if they experience high fevers, joint swelling, or persistent fatigue. “Based on what we know about coronaviruses generally, it is very likely that all of these individuals will completely recover,” he said.

Kuritzkes, Chang, and Berger all mentioned post-viral syndromes as a possible explanation for symptom relapse — although Kuritzkes doesn’t think such post-viral syndromes are likely to be common — and many patients I spoke with had received similar information from their doctors.

Neil Stone, a specialist in tropical and infectious diseases at University College London Hospitals, recently tweeted that he’d seen an uptick in hospitalizations of patients recovering from Covid-19 and theorized that the “wide array of covid phenomena which we don’t yet understand … may one day come to be known as Post Covid Syndrome.”

According to Kuritzkes, post-viral fatigue syndrome, for instance, is sometimes found in patients who’ve had mononucleosis, among other infections. “I’ve heard anecdotally of some [Covid-19] patients who seem to be experiencing something akin to that,” he explained. “Since we’ve only got three to four months of experience in the United States, it’s very hard to say what proportion would go on to develop … some form of post-viral fatigue syndrome.”

Some researchers are also concerned that Covid-19 might trigger ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), after noticing that some patients with pre-existing ME/CFS experienced an exacerbation of those symptoms after contracting Covid-19. The Open Medicine Foundation, an organization dedicated to ME/CFS research, recently announced a study that will examine the prevalence of potential chronic conditions like ME/CFS in patients with Covid-19.

Another possibility Kuritzkes suggests is that patients with relapsing symptoms may be experiencing an inflammatory syndrome similar to Kawasaki disease, which has recently been linked to cases of Covid-19 in children and young adults. It causes an inflammation of blood vessels that can lead to severe cardiac complications. However, we don’t yet know if this syndrome can develop in people of all ages.

Like many other aspects of the current pandemic, the question of relapse remains unanswered, and the stakes are increasingly high. Almost 2 million people have been diagnosed with Covid-19 in the US alone, and experts believe infection rates may peak again in the fall. Stories of relapsed patients indicate that those who fall ill and survive may still face devastating consequences of the disease.

Fiona Lowenstein is the founder of Body Politic, a queer feminist wellness collective, events series, and media company aimed at creating content and events on accessible wellness for marginalized populations. Her last piece for Vox was about the Covid-19 survivor support group she founded.

My coronavirus survivor group is my most important medical support right now

2021-04-14T11:31:58-04:00

Fiona Lowenstein (center) says the people in her coronavirus Slack group have conversations “pretty much going on literally 24/7.” “We have a bunch of different channels where people discuss things like symptoms or mental health issues or positivity.” | Images courtesy of Fiona Lowenstein; Danielle A. Scruggs/Vox

When I first became sick with Covid-19 on March 13, my symptoms matched the Centers for Disease Control and Prevention’s (CDC) description of the disease. I was not surprised to test positive when I was admitted to Mount Sinai Hospital in New York City on March 17.

In the weeks that followed, however, my illness began to morph. I developed a host of new symptoms, from severe sinus pain to rashes and hives, that weren’t yet being widely acknowledged. My recovery dragged on for more than seven weeks. In the absence of public health information that could explain or validate my experience, I connected with other Covid-19 survivors and started the Body Politic Covid-19 support group for people living with the virus.

As the group grew to thousands of members from around the world, it became clear that others were desperate for information to understand their experience. In the absence of comprehensive, up-to-date information from health authorities, the support group has allowed people living with or recovering from the disease to discuss lesser-known symptoms, crowdsource best practices from health authorities around the world, and arm against medical bias that affects marginalized populations.

There’s a rich history of such support groups in fighting disease, especially at early stages of public health crises when patients face stigmas and medicine is still playing catchup. During the AIDS crisis, groups like the Gay Men’s Health Crisis (GMHC), Gay Men of African Descent (GMAD), and SisterLove Inc. supported patients by providing structures of community care — peer counseling services and hotlines to answer questions about the disease that the medical establishment and government were failing to address.

The fact that the SARS-CoV-2 virus is completely novel means that governments, scientists, and medical officials were caught off guard and are still scrambling to understand this complex disease. Today, my support group is one of many attempting to meet the needs of people living with the coronavirus. There’s Survivor Corps, Long Haul COVID fighters, and COVID-19 Support Group (have it/had it), which are all active on Facebook.

As we wait for institutions to catch up with a new and fast-moving virus, parallel forms of information-sharing via communities, personal stories, and support groups like the one I started have become crucial.

Validating symptoms

The mainstream media is starting to report on the wide variety of symptoms patients are experiencing, in large part due to the efforts of survivors who have shared personal stories and information. With medical care arguably more inaccessible than ever due to high demand and testing still unavailable or being discouraged in many places, my support group allows patients who were unable to be tested or are struggling with lesser-known symptoms to receive validation from others in the same situation. Neurological symptoms, for example, while still not recognized by the CDC, are one of the most discussed issues in the group, along with GI issues and skin sensitivity.

Lauren Nichols, 32, a member of the group from Boston who tested positive for Covid-19 on March 17, told me she has dealt with “moderate-to-severe lower GI issues for 60 days,” which was not what doctors had told her to expect. In the “GI Issues” channel of our group, members say they wish they could see a GI specialist about symptoms, which include debilitating nausea and diarrhea that can lead to extreme weight loss or dehydration. Those who have been able to seek medical care for these kinds of symptoms have also shared recommendations from their doctors on over-the-counter treatments, foods to avoid, and the potential effects of consuming too much ibuprofen or vitamin C.

The CDC symptom list was updated on April 27 to include six new symptoms, including chills, muscle pain, loss of smell, and headache, but still excludes many of the issues widely experienced by people living with Covid-19. The CDC list is “not all-inclusive,” and many survivors in the group are reporting symptoms that aren’t on it.

There’s a rich history of such support groups in fighting disease, especially at early stages of public health crises when patients face stigmas

Cognitive and neurological issues are another big topic of discussion in the support group; brain fog and trouble concentrating seem to be major effects of the virus for many. In a Twitter thread that was shared in my group, David Lilienfeld, an epidemiologist, argues that neurological deficits are a likely impact of Covid-19, writing, “Do you really think that only smell and taste are affected?”

I have experienced debilitating headaches, occasional memory loss, and difficulty focusing on simple tasks. Others in the support group have navigated partial paralysis of the face, or pins-and-needles sensations that they attribute to nerve damage.

In the “neurological issues” channel of our chat, people share results of blood tests and coin their own phrases for difficult-to-explain symptoms like a tingling, vibrating sensation that seems to afflict many.

“I call them nerve storms,” Melody Rose, 34, from Arizona, wrote of the unexplained vibrating feeling. She asked other members experiencing this symptom to chime in: “Do you relax and let them just sweep over you? Or do you push through and ignore them?” Rose is one of many people in the group creating a new vernacular as they seek advice and help others navigate lesser-known symptoms.

Analyzing recommendations from around the world, together

Because the support group includes people from nearly every region of the world, members are able to share helpful advice from local authorities. That’s particularly valuable because guidelines seem to vary greatly by region and are often based on local availability of tests or political pressure. For instance, some current and former CDC staff believe the agency has been successfully sidelined by the current administration, and Rachel Maddow has argued that the health agency’s recommendations may be influenced by President Trump.

One of the biggest questions facing survivors is when it’s safe to cease isolation. When I was discharged from Mount Sinai hospital on March 18, I received instructions to be retested before I could stop isolating.

But when I spoke to my local department of health about getting a test, I was told no one was being retested and that I could cease isolation seven days after my first symptoms if the last three days were fever-free. I was initially skeptical of this advice, since I’d read that the virus can live on some surfaces for up to two to three days. A recent study from Wuhan detected the virus in patients for a median of 20 days after symptom onset, although there is not yet a proven link between viral shedding and infectiousness.

After I connected with patients in other countries through the support group, it quickly became clear that there were further reasons to prolong my isolation beyond the DOH recommendation. I learned that countries such as Singapore, Italy, and Australia often require patients to receive multiple negative Covid-19 tests before ceasing isolation or to isolate for up to 28 days, indicating that a lack of available testing might be the reason for lighter precautions in the United States.

Second, many of those in the group experiencing long recovery times were dealing with recurring fevers weeks and even months after initial symptoms. Since my instructions prioritized the importance of isolating while feverish but didn’t account for the possibility that a fever might return later in recovery, I thought it best to stay inside until I felt fully recovered. Finally, some in the Body Politic support group have shared suggestions on contagiousness from doctors, recommendations that were sometimes conflicting and often advocated being more cautious than local health authorities had advised.

A member of our group who lives in Virginia has been sick for over 50 days with a low-grade fever among other symptoms. She has received conflicting advice from doctors and health officials in her area on when to stop self-isolating. “The virus is so new that I don’t think the medical community has clear guidelines about what to do for prolonged cases,” she said.

Lisette Piper, a group member in the United Kingdom, told me that the group’s discussions had influenced her decision to self-isolate longer than National Health Service recommendations. She said it’s made her more aware of how much guidelines differ from country to country, and the fact that the UK’s guidelines are more liberal than many. “With this knowledge, I felt I had a moral responsibility not to break the isolation,” Piper said.

Members of the group who live in areas where testing is more available have also provided useful context for analyzing test results. Piper was told by her doctor that if she received a negative test, she was likely virus-free, but after learning more from the support group about the prevalence of false test results, she’s decided to wait until symptoms completely subside.

Perhaps it is unsurprising, then, that in a recently published survey done by group members, a majority of respondents said they had used personal judgment or recommendations from doctors, over public health guidelines, to determine when to re-integrate with family.

Over time, public health guidelines are likely to evolve and become more consistent, as more survivors are studied and further evidence becomes available, but in the meantime, the group allows people living with Covid-19 to collectively analyze global recommendations and discuss the best course of action.

Arming against medical bias and discrimination

While Covid-19 has disproportionately affected black and brown communities in the US, the public faces of Covid-19 survivors tend to be white. Stories on the massive impact of coronavirus on communities of color often miss the nuances of people’s experiences, like the fact that people of color and women are more likely to have their symptoms dismissed by doctors, or that black people are being turned away at emergency rooms and urgent care centers.

Michelle Lemus, a Mexican American group member in California, developed chills and fever on March 16 after having contact with someone who’d traveled to Italy and was tested on March 17. Her test came back negative, but Lemus is concerned that may have been due to the type of test she took — she was tested via her sputum, but she was not yet coughing at the time of her test.

When Lemus’s symptoms persisted, her doctor prescribed her antibiotics, citing the negative test result as proof that she didn’t have Covid-19. Lemus’s fever continued to cycle on and off, and her shortness of breath became severe, making it impossible to sleep without, she says, “waking up gasping for air.” Lemus felt she had no choice but to go to urgent care, but the staff there was unwilling to retest her and ignored her concerns, telling her that her symptoms were likely anxiety or heartburn.

“It didn’t surprise me,” Lemus told me. “I’ve had doctors dismiss me my entire life.” Lemus is overweight and says she’s faced bias from doctors in the past due to her race and size. She had polycystic ovary syndrome (PCOS), a hormonal imbalance, for years before she was accurately diagnosed, because doctors kept telling her her menstrual cycle would improve if she lost weight.

One of the biggest questions facing survivors is when it’s safe to cease isolation

Discussions about medical bias come up regularly in the support group. When Karen, a 52-year-old white woman in New York City, posted in the mental health channel of our group that a doctor had dismissed her cardiac pain and shortness of breath as anxiety, a number of women and people of color replied that they felt they’d been treated similarly. “When I saw ‘anxiety’ on that paper, I was livid,” Karen told me. “I don’t even have anxiety. … This wasn’t a medical diagnosis; this was a judgment.”

The opportunity to connect with others to both affirm one another and offer tangible advice is even more important for patients who are less likely to have their concerns taken seriously by medical professionals.

Sarah Chambers, a member of our group who also tested negative but was told by a doctor to assume she had Covid-19 due to her symptoms and her partner’s positive test result, recently shared a guide in the “under 40” channel of our group on navigating ERs and ambulances from a patient’s perspective. “Often doctors don’t take young [people], women and [people] of color seriously,” Chambers’s guide begins. She goes on to suggest that patients ask doctors to “explain ALL of the test results and diagnosis before you leave,” saying that the doctor she and her partner saw failed to mention several important aspects of her bloodwork or the fact that her partner had severe pneumonia.

When Lemus returned from her urgent care visit, she felt physically and mentally exhausted. She turned to the support group. “Knowing I wasn’t alone in my symptoms and experiences is what kept me going,” Lemus told me. “I’m so grateful to have found this group. They were way more helpful than any doctor I’ve spoken to.”

Many doctors are aware of discrepancies in care — the National Medical Association, the largest professional organization representing black doctors, recently urged federal health agencies to study the role of medical bias in Covid-19 cases — and some medical professionals seem eager to address patients like Lemus whose symptoms or test results mean they’ve been ignored by other health care providers.

The Body Politic support group receives frequent inquiries from doctors and researchers who are eager to review our data or join the chat, and we’re working to set up Zoom webinars with health care workers who are interested in providing virtual support and care. It is my hope that such partnerships between the broader medical community and those engaging in community networks like the Body Politic Covid-19 support group will ultimately lead to more informed, accessible, and unbiased medical care for all.

Fiona Lowenstein is the founder of Body Politic, a queer feminist wellness collective, events series, and media company aimed at creating content and events on accessible wellness for marginalized populations.