Reddit is a news aggregation website and social media network organized into thousands of forums called subreddits. In March, a new subreddit emerged: r/COVID19-Positive. The community boasts 71,000 members, most of whom have tested positive for the coronavirus.
While Simon’s severe symptoms lasted about two weeks, his milder symptoms have persisted for roughly three months after his diagnosis. He considers himself a long-hauler, the term used for someone whose COVID-19 symptoms just won’t seem to go away.
For Simon, the subreddit offered a sense of community. Reading accounts from other users who also battled the illness for long periods of time made him feel understood.
“Even with expensive private insurance, somehow American healthcare is extremely bad at informing us of how to behave and what recovery looks like,” he said. “I got something like four different answers to when I could discontinue my self-isolation and how long lingering symptoms would last, when I would be considered cured, how long I’d be infectious. The subreddit had far better information than my doctors.”
Long-hauler: the term used for someone whose COVID-19 symptoms persist for longer than the typical two-week period of illness.
Fauci Finally Acknowledges COVID-19 Long-Haulers
The U.S. government has been slow to publicly acknowledge the plight of COVID-19 long-haulers. This finally changed at a July 9 press conference in which Anthony Fauci, director of the Institute of Allergy and Infectious Disease and high-profile member of the White House Coronavirus Task Force, said that “there may well be a post-viral syndrome associated with COVID-19,” as reported by CNN.
“If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery,” Fauci said.
Fauci is aware of online support communities for these patients.
“There are chat groups that you just click on and see people who recovered that really do not get back to normal,” he said.
While Reddit appears to have one of the largest online communities for coronavirus patients, more than 4.5 million people have joined over 4,000 COVID-19 Facebook support groups, as reported by NBC News.
Body Politic, a queer feminist wellness collective and media company, maintains a support group specifically for long-haulers. They organize on Slack, a business workflow and instant messaging app divided into sub-conversations called channels. One channel for group members who have experienced symptoms for more than 30 days has 3,700 members, according to The Atlantic.
Lisa’s Story: A Long, Lonely COVID-19 Journey
For Lisa M., a 44-year-old freelance marketing consultant from Chicago, battling COVID-19 has been an isolating and anxious experience. Lisa is a long-hauler; July 5 marked 17 weeks of COVID-19 symptoms, although her doctor told her in late May that she was no longer contagious.
“There's the isolating feeling of, nobody knows what it is. There is no cure. There is only treatment for it, and treatment of the symptoms,” Lisa told MedTruth. Her physician told her to try and avoid going to the emergency room if she could, and she remembers a few scary nights wondering if she should go anyway or stay home and hope she woke up the next morning.
Lisa’s symptoms dragged on, and new ones continued to emerge throughout her illness. She realized early on that her case seemed atypical.
Her family was sympathetic and her doctors tried their best, Lisa said, but nobody had answers for her. Her mother encouraged her to join COVID-19 patient communities on Facebook and Reddit so Lisa could see if others had experienced prolonged symptoms and seek guidance.
“We were told at the beginning, you know, ‘this is either a week or two, or if you're elderly or have preexisting conditions, you need to be careful,’ that if you're relatively healthy and relatively young, you'll be over this in a week or two, and that's just not the case,” Lisa said. “I didn't really know that it was isolating in that ‘well, am I the only one that is suffering like this, like, what's wrong with me?’”
Over the weeks and months to follow, Lisa learned from the support groups that she was not alone. Now, as she enters the fifth month of her battle, she offers help to the newly diagnosed.
“People all over the world are suffering from this, and they're suffering for such a length of time that I think nobody expected, and I just really hope that people start to validate and see us long-haulers,” she said.
Long-Haulers Continue to Confound Medical Community
Medical professionals aren’t sure why some long-haulers’ illnesses last longer than a typical case of COVID-19. While it’s understood that older patients and people of any age with certain preexisting conditions are more likely to experience severe disease, according to the CDC, many long-haulers — including those who spoke to MedTruth — are young, active and previously healthy.
Some doctors worry that such patients may never fully recover, as reported, for example, by WSMV News4 Nashville.
One guess is that these patients’ bodies experience a reactivation of the virus after its initial effects subside.
Akiko Iwasaki, a Yale University immunologist, told The Atlantic that it may be possible for the virus to continue residing within a host without displaying symptoms all the time. Long-haulers’ bodies may be responding to non-infectious, medically undetectable viral genes.
“You’re reacting to a ghost of a virus,” Iwasaki said.
It could also be the case that patients are simply getting reinfected when they begin to go out again after initial symptoms clear up. Doctors have also questioned whether these patients are experiencing an intense post-viral syndrome.
As of now, there’s simply not enough information to confirm or rule out any of these hypotheses.
The percentage of COVID-19 cases that become long-haul is unclear.
According to the BBC, between 5-10% of the three million patients who downloaded an app called Covid Symptom Study reported experiencing symptoms for longer than a month. According to another BBC report, The National Health Service in the UK says that tens of thousands of patients there are grappling with long-term effects of COVID-19.
Jasmin’s Story: Medical Gaslighting, Dismissal of Symptoms
While Lisa M. said she’s lucky to have a strong support network and a caring physician she can rely on, not everyone is so fortunate.
Jasmin B., 20, contracted COVID-19 on a weekend trip to Amsterdam in March while living in London, where she was studying at the School of Oriental and African Studies. She wasn’t able to get tested at the time, but she tested positive for antibodies in April.
“At the time, COVID was not really taken seriously in the UK. I wish it had been, as I made the decision shortly after to travel back to Germany, upon the request of my family. Had I been tested before, I would obviously not have taken a plane back (sans mask, might I add) and put other people at risk,” Jasmin told MedTruth.
For two months Jasmin struggled with typical COVID-19 symptoms: shortness of breath, cough, headaches, extreme fatigue, muscle aches, confusion, dizziness and loss of taste and smell.
While Jasmin’s symptoms have lessened, they continue to come in waves. She’ll feel back to normal a few days and then get hit with a resurgence.
“I notice that when I do a lot one day, such as walking longer distances, I definitely get that ‘hungover’ feeling the next day. I’m quite scared about how much longer this is going to take,” she said.
Jasmin said that nobody took her lingering symptoms seriously. Nothing unordinary came up in tests of her blood and lungs, and without concrete evidence, doctors brushed most of her symptoms off, especially the headaches and fatigue. Her doctors, she said, implied that she was a hypochondriac although she has never been an anxious person. She turned to the Internet for advice and stumbled across r/COVID19Positive on Reddit.
“I just read other people’s posts, especially the ones by long-haulers, and I feel understood and validated,” she said. “The subreddit has helped me to deal with this better mentally. I initially felt incredibly lonely, and that has changed now.”
Jasmin believes that many long-haulers, especially women, have experienced medical gaslighting from their doctors as they attempt to navigate a new disease that still eludes them.
“I think that’s what makes it so hard for everybody,” she said. “So little is known about the virus and post-viral recovery.”