Inside a Covid-19 support group, where a long-haul future is faced head-on
Through virtual support groups, Covid-19 long-haulers are banding together, fighting for their mental health, and demanding better care.
One by one, 40 faces fill the Zoom call grid.
Among them are a young professional at a desk, an older woman knitting on a couch, and a middle-aged man sitting cross-legged on the living room floor. Everyone is tired.
Noah Greenspan, a pulmonary therapist and the host of this melancholy gathering, breaks the silence with an upbeat greeting of “Nice to see some familiar faces and some new ones! Let’s get started.” Erika Mastrobuono, a social worker and therapist who is also Greenspan's sister, begins by leading the group in a breathing exercise.
This is a meeting of one of the first Covid-19 support groups in the country, created for a disease that barely existed a year ago and has killed more than 280,000 people in the U.S. since. Each patient here is a “long-hauler” — someone who hasn’t fully recovered from Covid-19 in the weeks or months since their infection. Why they meet via a video call is also why they are compelled to participate: the virus.
A few eyes glance around the grid to see who will talk first. Then, the deluge. One describes a recent flare-up: chronic fatigue made taking a shower “feel like running the New York City Marathon.”
Five minutes later, another chokes back tears describing her months-long fight to catch her breath.
A third says her illness has emotionally transported her back to an upbringing in poverty when survival was a daily struggle.
It felt like “somebody had sucked my soul out of me,” says another.
This is It starts with yes!, a support group for long-haulers. Over the course of two months of reporting, a dozen interviews, and that sobering Zoom meeting, one thing became clear about the insidious nature of Covid-19's long-term effects: Long-haulers live a life that most don't understand, a life that gets very little media attention, and a life that is going to be much more common in the months and years ahead.
An estimated 10 percent of all novel coronavirus patients are predicted to be, or become, long-haulers. This statistic is a contradiction to the early understanding of the disease, when it was thought to cause either a two-week flu-like run or an extended stay in an intensive care unit.
Long-haulers live with a disaster of uncertainty, says Laurie Nadel, a psychotherapist who helps lead this group. But they are learning that the path to recovery is contingent on community. Reclaiming one's identity beyond that of a chronically sick person means coming together.
Founded in August and operated under the umbrella of the New York City-based Pulmonary Wellness Foundation, It starts with yes! is named for its “can-do” philosophy and is part of a wave of online support groups connecting people during what can be a lonely, disorienting recovery.
These long-haulers weren't necessarily the sickest of coronavirus patients. Many were never intubated or put on a ventilator. Some never even went to the hospital. Yet, three, six, even seven months post-infection, they deal with symptoms ranging from shortness of breath to heart palpitations to smell loss to chronic fatigue. “It's kind of hit me that it's probably going be a forever thing, which is really frustrating,” nurse practitioner Christina Alexander told Inverse earlier this year.
Actor Bryan Cranston is the latest high-profile long-hauler to come out, saying last week: “The only thing that lingered, and still is to this day, is I lost a percentage of my ability to taste and smell,” he said on The Ellen DeGeneres Show. “I think about 75 percent has come back, but if someone was brewing coffee and I walk into a kitchen, I cannot smell it.”
While Covid-19's physical symptoms are painful and, at times, debilitating, it's the psychological toll that often keeps long-haulers awake at night. Research indicates that chronically ill people often lose their sense of identity, safety, and social support. This is the long-hauler's experience.
“I was completely astonished there were so many people with the same symptoms.”
These losses are compounded by economic pressures, political instability, and a world in crisis. Long-haulers, in turn, report crushing anxiety, depression, post-traumatic stress disorder, and suicidality at alarming, but still inexact, rates.
When Arizonan Sallie Meyer, a 61-year-old participant in It starts with yes!, got Covid-19, she experienced chest tightness, gastrointestinal issues, and the need for a “hibernating” kind of sleep. In the most severe periods, a dehydrated Meyer couldn't stay awake to drink fluids.
Months later, her shortness of breath and fatigue continued to plague her. Meyer combed the web and sought help from a string of doctors. She felt a fog of uneasy anxiety creep in as the symptoms wore on.
“You feel completely isolated, and there's no information, and you feel alone,” Meyer tells Inverse. “Being tasked with finding your own cure when you're ill, or finding people like you, is extremely difficult on a person.”
After a series of disappointing doctors' visits, Meyer stumbled upon the support group.
“I was completely astonished there were so many people with the same symptoms that I wasn't hearing about,” Meyer says. “I felt very validated.”
Meyer and dozens of others are finding a new identity as Covid-19 long-haulers. They crowdsource treatments and offer support to one another they themselves are missing. Isolated and misunderstood, long-haulers are fighting for their mental health while finding solace in their peers.
For Martha Griffin, a 60-year-old long-hauler based in Austin, Texas, the program has been “1,000 percent her lifeline.”
“It showed me I am not alone,” Griffin tells Inverse.
For other Covid-19 survivors, Griffin asks: “Where is the post-Covid care?”
A space for “the forgotten” — With the backing of the Pulmonary Wellness Foundation, Noah Greenspan, one of the group's leaders who works there, established the support group.
The foundation also started a Covid-19 rehab boot camp and opened a brick-and-mortar clinic for Covid-19 survivors in New York City. Both the support group and rehab are free of charge. These initiatives are part of a boom of post-Covid-19 clinical care throughout the country.
By sheer luck, a friend's referral, or some rabbit-hole Googling like what Meyer did, long-haulers are finding themselves among friends.
Every Wednesday and Sunday night, long-haulers virtually share how they are feeling without interruption or judgment — a luxury often inadvertently denied by family and friends.
The group leaders offer guidance for coping with Covid-19's mental toll. They teach the group how to manage their energy, how to talk with loved ones and their doctors, and how to break anxious habits.
The solutions are often small actions, like taking five minutes to meditate or go for a walk, and prioritizing the tasks of the day. Doing something that makes any anxious person feel just a bit better. They can build on that.
“A lot of the long-haulers were being told nothing could be done when they were trying to find help,” Erika Mastrobuono, the social worker and group leader, tells Inverse. “The basic idea of the support group is that you focus on what you can do.”
“The basic idea of the support group is that you focus on what you can do.”
In that way, It starts with yes! — while novel in its dealing with an emergent disease — is a new chapter in an ongoing story. In the wake of other public health crises, chronic illnesses, natural disasters, and collective traumas, peer-to-peer support groups often arise.
In retrospective studies on the HIV epidemic, one of the few public health crises close to Covid-19 in scale and scope, support groups were linked with reduced mortality, improved quality of life, and better medication adherence. The same goes for collaborative help — online or in-person — for conditions like diabetes.
Support groups lead to meaningful health outcomes because, in those online chats or face-to-face meetings, people share coping strategies, disclose their struggles, reduce stigma, and receive health education. In a health system where the average primary care visit is just 17.5 minutes, extended support can be life-changing.
“People who have serious illnesses really are ‘the forgotten.’”
Such is the case for Jody Britt, a 55-year-old long-hauler based in Brooklyn, New York. Two days before Inverse spoke with Britt, she experienced tingling and tremors all across her body, “as if somebody is electrocuting you from the inside.”
“There were nights when I thought I just would stay up because I was afraid to go to sleep, because I thought I might die,” Britt says. She was also too afraid to go back to the hospital and potentially take already strapped health resources from more severely ill patients.
Add these symptoms to six and a half months of daily pain and discomfort due to a myriad of physical symptoms.
“My hands were on fire,” Britt recalls. “I was in excruciating pain, and I thought, If this is the way my life is gonna be, this is insane. I don't know if I can do this.”
Britt eventually went to sleep and had a check-in with the long-hauler support group on Zoom the next day.
“It was just so loving and so healing,” Britt says. “I woke up this morning, and I was like, Wow, OK, you can't quit. You just can't quit.”
Even though each long-haulers' experience is different, chronic illness proceeds with the same stages of loss.
When patients are first infected or acutely ill, there's often a swell of support. But as the weeks wear on, friends and family “drop off the face of the Earth,” often because being around an ill person can make others uncomfortable, Nadel, the psychotherapist, says.
In a pandemic that puts everyone's minds through the wringer, even loved ones have less emotional bandwidth.
“People who have serious illnesses really are ‘the forgotten,’” Nadel says, adding the United States has a unique stigma against illness that doesn't exist in most other countries.
“There's a feeling that when you're seriously ill, people feel ashamed; they feel like a failure,” she explains. “If they don't get better quickly, they think, ‘What's wrong with me?’”
After losing the regular flow of social contact, people then lose their sense of safety, Nadel says. They start to feel vulnerable and unsafe in their own skin as physical symptoms rob them of their sense of control.
Unlike some of Covid-19's oldest and sickest patients, many long-haulers were previously healthy.
“We've suddenly been thrust into a world where we were doing just fine and now we have an illness that no one knows anything about,” Meyer says. “One that's been highly politicized as well.”
People ask: “Who am I if I can't run? Who am I if I can't talk? Who am I if I can't breathe?” Nadel, who counsels people through Covid-19 and other illnesses, says.
The support group aims to normalize those questions and to show patients they aren’t alone.
“In the virtual Zoom sessions or in the online social media support groups, someone will say, ‘I had this symptom today,’” Meyer recalls. “And 400 people will respond and say, ‘Yes, I had that experience this morning.’”
An “overlapping pandemic” — A complete picture of Covid-19 long-haul effects may not emerge for years, researchers write, as was the case when children born during influenza pandemics were found to have higher rates of psychotic disorders in adulthood later on.
When it comes to long-haulers, post-traumatic stress disorder (PTSD) is an emergent concern. Being intubated, mechanically ventilated, or experiencing delirium in the hospital — situations associated with the novel coronavirus — can drive PTSD.
Andrew Levine is a researcher at the University of California, Los Angeles, who studies the neuropsychological effects of Covid-19. He wonders about an “overlapping pandemic” on the horizon, faced by long-haulers. Levine has observed a rise of anxiety and depression faced by Covid-19 survivors in his research, a trend mimicking the wake of other viral outbreaks like SARS and MERS.
Currently, studies estimate one in 17 people who have had Covid-19 could be diagnosed with anxiety, depression, or insomnia for the first time.
“Imagine the depression that can result in feeling like you don't want to get out of bed; you don't want to deal with the pain today. You're tired of being sick and you miss your old life,” Levine tells Inverse. “Then there's the complicating factor of losing one's job or not being able to interact with one's family.”
“This is all in your head” — Clinicians are going in blind when it comes to treating Covid-19 long-haulers because the research is still in its infancy. The most detailed report on post-Covid-19 care was initiated by patients and came to fruition because of them. Survey questions were aggregated and curated by patients, and analyzed by patients with expertise in quantitative and qualitative data analysis.
For the bulk of the pandemic, doctors have been tasked with bringing patients back from the brink of death. They are not, in turn, necessarily focused on helping patients living with the disease for months on end.
“And the doctor was basically saying, ‘Just take aspirin.’”
Because of this lack of understanding, patients can be treated like their symptoms or their condition is a sign of hysteria.
“There's nothing worse than not feeling well, going to people who you want to help you, and being told, ‘This is not real; this is all in your head,’” says Greenspan, one of the group's leaders. “Is it anxiety-provoking? Absolutely. Is it possibly depressing? Absolutely.”
And what long-haulers are going through, Levine stresses, is “very real.”
“For the long-haulers, whatever they're experiencing, for whatever reason, it has to be appreciated,” says Levine. “Whatever it is — if there's some sort of biological basis for it or if it's completely psychological — it has to be appreciated that their experience is very real.”
Within a week of infection, Leigh Jerome, a long-hauler in her 50s who lives in Brooklyn, New York, faced a multitude of physical symptoms:
- extreme fatigue
- body aches
- rapid heart rate
- respiratory distress
- sensitivity to light
- tingling in her scalp, tongue, and face
She went in for a follow-up visit with her doctor, and as she puts it, he just didn't know what to do. He wasn't being unkind, but all he said was, “I can offer you an antidepressant.”
“Having our symptoms shrugged off and dismissed over and over by physicians is the most common refrain with Covid-19 long-haulers,” Jerome tells Inverse. “It's everybody; it's all of us. It's constant.”
She acknowledges it might not sound like much to have to get up and go to an appointment. But being ill compounds the logistical challenges of even mundane tasks.
“When you're sick, and you have to get out of bed, take a shower, get dressed, travel to see a new doctor ... and they blow you off — it is devastating,” Jerome says.
Britt, another group member, echoes Jerome's experience. She went to a physician for help and walked out more confused and distressed than when she came in.
“My mental state really took a dive because the pain was unbelievable,” Britt says.
“And at this point, there was really nowhere for me to go. I wasn't dying, but I was just in constant pain. And the doctor was basically saying, 'Just take aspirin.’”
These faults in care don't stem from bad intentions or gaslighting, but from the protocols of the health system, says Greenspan, a group leader. “We have a very knee-jerk medical system where it's like, ‘You have wheezing, you have asthma. You have knee pain, you have arthritis. You have heartburn, you have reflux,’ but Covid-19 doesn't work that way,” he says.
“We are the experts” — Thousands of other long-haulers are calling for more research, attention, and treatment options.
“We are sick, we are here, and we need help,” Jerome says. “We need at least the medical community to recognize it and to be alarmed by it. To be outraged by it. It is unconscionable that we are trying to figure this out alone.”
“It is unconscionable that we are trying to figure this out alone.”
While many long-hauler patients aren’t adequately served, they can serve others. They're communicating in support groups like It starts with yes!, Slack channels like Body Politic, and Facebook groups. Many are offering to participate in clinical trials or consult with physicians. Helping other long-haulers can go beyond a support group; it can mean a new path toward research and recovery.
“At this point, as crazy as it sounds, we are the experts,” Jerome says.
“They need to come to us and recognize that when you have 7 million people who are all trying to figure this out together, that's a lot of people talking and sharing insights. And we've probably come up with a few things that are worth listening to.”
For others who are still dealing with recurring symptoms, the end isn’t in sight. They continue to tune into the support group twice a week, making it a point to give advice to those newer long-haulers, of which the numbers continue to grow. How long they will tune in, how long these groups will even exist, and whether or not they will evolve into some other form is not known. All that's certain is that support groups seem to be helping.
Long-haulers say it's a gift to find people who are going through similar experiences — who are sharing what works, what doesn't work, and new techniques. They talk about breathing exercises, relaxation strategies, exercise and rest routines, and how to communicate with their health team.
“It all came with trying to find what was going on with me because my regular doctor couldn't tell me,” says Meyer.
Britt views what she’s seen in the support group as a testament to the human spirit. The group has gotten her “through the darkest nights,” and she hopes others who feel like they’ve reached an impossible impasse find a community as she has.
“These are the most courageous people I have ever met in my life,” Britt says. “What's coming out is this ability to — as a community — be vulnerable, and yet at the same time, stand up for what we need, which is care.”