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

Online support groups are filling Covid-19 information gaps and helping patients arm themselves against discrimination.

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.

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.

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.

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