- Some COVID long-haulers told Insider they turned to Facebook groups when their families did not believe them.
- They say the encouragement they receive online makes them feel visible, understood, and believed.
- Doctors say these groups are a valuable resource, but warn they could unintentionally spread misinformation.
- Visit Insider’s homepage for more stories.
Patients suffering from long COVID search for a silver lining on the internet and turn to online communities for solidarity.
Support groups on Facebook and other social media sites offer COVID long-haulers a much-needed ray of hope and source of support in times of despair — especially when their doctors are dismissive or their friends and family do not believe them.
The wide variety of symptoms of long COVID, which can range from physical ailments to mental health issues — and how people can manage them in the long term — are still being studied, even as the number of known COVID-19 cases in the US alone passes 33 million.
Insider spoke to nearly a dozen COVID long-haulers who said their online communities made them feel visible, understood, and believed. Female sufferers said the groups were especially important to them because they had struggled so much to be taken seriously by the medical establishment. But, as more and more people turn to online groups to find solace and community in their struggles with long COVID, medical experts worry these groups may harbor dangerous misinformation.
What is long COVID?
Long COVID symptoms are often similar to chronic fatigue syndrome, Elaine Wan, assistant professor of cardiology at Columbia University’s Vagelos College of Physicians and Surgeons, told Insider. Some sufferers may report constantly fatigue, brain fog, muscular weakness, joint pains, shortness of breath, and cough. Meanwhile, other patients Wan has seen have had headaches, heart palpitations, chest pain, and sustained hair loss, as well as severe tinnitus, anxiety, and depression.
Experts disagree about just how many long COVID sufferers there are. According to Harvard Health Publishing, several studies have found that 50% to 80% of COVID patients may continue to experience a variety of COVID-linked ailments — long after tests no longer detect the virus in their bodies. CNN, however, reported a more conservative number in April, citing clinicians who said that around 10% of COVID patients would suffer long-term symptoms.
Even the most conservative estimate puts several million people suffering from some variation of long COVID.
Many of them have turned to Facebook groups to connect with each other. Insider counted close to 100 COVID long-haul support groups on Facebook of varying sizes — with one of the largest being the Survivor Corps, a group with over 166,000 members.
Support groups help long haulers push for better care
Jody Brown Hall, 44, who lives in Northern California, is one of the hundreds of thousands who have turned to these groups for help. She experienced shortness of breath, fluctuating heart rate, low blood pressure, anxiety, and serious hair shedding after being diagnosed with COVID in December. She started a women’s Facebook group for COVID long haulers like herself in February, the Women’s Long Haulers COVID Support Group. Hall expected 20 sign-ups — but three months later, the group has over 2,000 members.
Hall told Insider that she still suffers symptoms now, and her doctor recently diagnosed her with “COVID myocarditis,” a potentially serious inflammation of her arteries. But she feels better with the affirmation she gets from the Facebook group — which she spends two to three hours on every day.
“I am blown away by how much support it has brought me and so many other women. I think feeling isolated with these scary health issues makes the situation feel dire, and it’s heartening to know that having this group has actually helped save lives,” she told Insider.
“I couldn’t imaging feeling like this for over a year, losing a job and having insurance running out, which is what some of our group members are going through now. But we’ve had members step up and help support the women who are going through the worst struggles,” Hall added.
Kelsey Chao, 39, who lives and works in Boston, told Insider that she felt “unseen and isolated” before joining Hall’s group in March.
“Months after my COVID diagnosis in October, I still had difficulty getting out of bed and suffered from chest pains and constant headaches. I would tell my mother and husband that I was fatigued and feeling groggy, but they didn’t believe me. I would tell my friends I was constantly depressed, and no one seemed to think that was linked to COVID,” Chao said.
Chao’s anxiety intensified when she found out that she was pregnant last month. She worried that the chest pains and occasional respiratory issues she experienced would affect her baby.
“I felt like my world was ending because this news — which I was supposed to be overjoyed about — could not have come at a worse time,” she said.
The long hauler’s Facebook group provided “solidarity and sympathy,” she continued. “It helped to know that I was not the only one who felt that way, who had these symptoms, and more importantly, that I wasn’t imagining things or making my symptoms up.”
Chao now speaks to members she met on the group for an hour every day and hopes she will be able to meet up with them in person when she feels fit enough to travel.
Dominic Murphy, 49, from Los Angeles, was diagnosed with COVID in November of last year. He said that being on multiple COVID long-hauler Facebook groups — including one 29,000-member strong Facebook group — helped give him a “space to vent.”
“I never thought it would be this emotionally liberating to talk about things as mundane as joint pain. At first, my doctors didn’t believe that the joint pain had anything to do with COVID and just kept prescribing things that didn’t work,” he told Insider.
“I went back with more information I got from the group and told my doctor — ‘hey, what you’re using to treat me doesn’t help, and we need to do better,'” Murphy said.
He is currently working with his physician to run tests and see if more can be done to alleviate his symptoms, which range from chest and joint pain to constant headaches and breathing difficulties. But the groups he is a part of, he says, are a “godsend.”
“Men might find it hard to talk about how they feel, whether it’s in front of their friends or families. We need to change that, of course, but the group has been a way for me to express myself,” Murphy said. “On bad days, sometimes all you need is to feel like you aren’t pushing a rock up the hill on your own.”
Online groups are a source of support — and data
A public information display offering support to counter the mental health aspects of COVID-19 in the UK.
Mark Kerrison/In Pictures via Getty Images
For COVID researchers, these support groups potentially offer a wealth of data on a virus we’re all still struggling to understand.
“I think that these patient groups are a very good idea as they let people collect information, which can be useful to scientists and clinicians who are trying to characterize a new condition. I actually encouraged one of my patients to start a Singapore chapter,” Paul Tambyah, a professor in the Yong Loo Lin School of Medicine at the National University of Singapore, said.
Shruti Mehta, professor in the department of epidemiology at the Johns Hopkins Bloomberg School of Public Health, said that physicians are still learning how to cope with long COVID, as patients experience a wide variety of symptoms and do not yet know what the likelihood or time frame for recovery is.
Mehta believes online support communities are an important part of recovery.
“We need more of what has already started to happen from support groups to specialized care centers. And we urgently need research to better understand how common long COVID is, who is at risk, why they are at risk, and what the course of the disease is,” she added.
Meanwhile, Columbia professor Wan says these offer a critical component of mental health support. Wan suggests long COVID sufferers try the COVID Advocacy Exchange, the National Patient Advocate Foundation COVID Care Resource Center, the Body Politic COVID-19 Support Group, the Survivor Corps, and the Patient-Led Research for COVID-19 for support and medically sound information.
Ultimately, the groups are a strong indicator, said Joanna Hellmuth, a neurologist in the University of California San Francisco Memory and Aging Center, that modern medicine is failing to provide adequate answers for long COVID sufferers and simply not doing enough to meet patients’ needs.
But while medical experts say that support is important — they also warn about the pitfalls of relying too heavily on peer-to-peer advice.
Michael Saag, an epidemiologist at the University of Alabama, Birmingham, acknowledged that while the support generated amongst those in long COVID groups may be valuable, a “caveat emptor” regarding information shared on these groups is necessary.
“It is a place to share experiences and a place for people to support one another. I think caution is warranted, however, in relying on medical advice or claims of research success from a Facebook site,” Saag told Insider.
“There is no peer-review and no easy way for a group member to assess the accuracy — or not — of medical information shared there,” he added.
Hellmuth, who studies patients with long COVID, told Insider that while online forums run the risk of perpetuating misinformation, there was still a lot of value in these groups — to teach doctors to take into account patients’ input and what they experience.
Ideally, COVID long haulers would use discussions they’ve had in support groups as a jumping-off point for conversations with their doctors.
“One of the beautiful things about science is that data can come from all different sources,” Hellmuth said, noting that citizen science — where members of the public participate in collecting and analyzing data — has its own value.
“Hopefully, a silver lining of the COVID-19 pandemic is that it will further democratize medical science,” she added.
Ziyad Al-Aly, assistant professor of medicine at the Washington University School of Medicine in St. Louis, told Insider he thinks doctors need to adapt to the “reality” of long COVID.
“Governments and health systems should be prepared,” he said. “There will be millions of people with long COVID, and these people will need integrated multidisciplinary holistic care.”
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