Business Insider spoke to 17 coronavirus patients who have had symptoms for more than 100 days.
Few of them have gotten a clear answer from doctors as to why they’re still sick.
Their lives have changed drastically in the last few months.
Some face unemployment or might have to file for disability as they stare down the barrel of chronic illness.
Visit Business Insider’s homepage for more stories.
The people who’ve had coronavirus symptoms for more than 100 days have a nickname for themselves: the long-haulers.
They’ve been dealing with the virus for much longer than most of their peers, and far longer than their doctors anticipated. As their illnesses persist without explanation, these patients turn to online support groups on Facebook, Reddit, and Slack, where they seek medical advice, swap war stories, and share updates on their health.
“We’re all kind of diagnosing each other,” Peggy Goroly, a 56-year-old from Long Island who belongs to a coronavirus support group on Facebook, told Business Insider. “You’ll hear someone else say something and then you realize it’s happening to you, too.”
Goroly has had COVID-19 symptoms since March 5. When she initially got sick, she quickly developed a cough, fatigue, and shortness of breath. Her lips and eyelids turned purple. She tested positive twice: once in April then again in May.
Her third diagnostic test came back negative on May 21, but more than 100 days after her symptoms started, most of them haven’t gone away.
“I try to spread the word around to other people that they should be very careful, this isn’t a joke, and I’m still sick and people can’t understand,” Goroly said. “The only place where I get my recognition that it’s okay and it’s normal is the group.”
Business Insider spoke to 17 coronavirus patients like Goroly who have been symptomatic for more than 100 days. Some have been in and out of the emergency room. Many are young — in their 20s and 30s. They’re confused about why their symptoms have lasted for so long.
Most of these patients’ infections have drastically upended their lives. They’ve dealt with chest pain, shortness of breath, nausea, heart palpitations, loss of taste and smell, and other prolonged symptoms for months. Some are facing unemployment or having to file for disability as they stare down the barrel of chronic illness. Others have struggled to care for their children or family members.
These cases could offer crucial information for those developing coronavirus treatments, formulating workplace policies, and issuing public-health guidelines. But for now, these long-haulers say, they’ve been relegated to the shadows of the pandemic.
‘My symptoms aren’t matching the test results’
Getty Images/John Moore
At the start of the pandemic, the US Centers for Disease Control and Prevention suggested that mild coronavirus symptoms typically lasted for 14 days, while the World Health Organization reported that recovery could last up to six weeks for severe or critical patients.
More recently, both agencies have acknowledged that the coronavirus may have long-term symptoms, but neither has offered a timeline.
“We hear anecdotal reports of people who have persistent fatigue, shortness of breath. How long that will last is hard to say,” Jay Butler, the CDC’s Deputy Director of Infectious Diseases, said on a press call on June 25.
“Indeed, there are some people who have persistent symptoms, like a long-term cough,” Dr. Maria Van Kerkhove, the technical lead for the WHO’s pandemic response, said during a press call last week. “They may feel quite fatigued for some time, may feel some shortness of breath while they’re climbing stairs, but we are working to better understand what recovery looks like — and more specifically, and more importantly, what type of long-term care, if needed.”
But the stories given to Business Insider present a more harrowing picture than that.
For Goroly, a trip to the grocery store means spending the rest of the day on her couch, struggling to breathe. Other patients reported getting out-of-breath from walking their dogs, playing with their children, or going to the mailbox. Some have barely left their beds in months.
“Just this past couple of weeks, I’ve ventured out into the living room area,” Cheyenne Beyer, a 27-year-old living in Austin, Texas, told Business Insider. “The fact that it’s been three months and I still don’t know how it is going to progress or get better — it’s just scary.”
Beyer has gone to the ER three times since February, when her symptoms started. She was denied a coronavirus test in March because she didn’t meet the CDC guidelines at the time. After testing positive in April, her heart started beating more than 100 times per minute (a condition known as tachycardia) and her blood-oxygen had dipped below normal levels.
In May, she was admitted to the hospital overnight, but her blood work and chest CT scans came back clear. She still has an elevated heart rate, erratic blood pressure readings, and a low-grade fever.
“If you look at my test results, I look healthy as a horse, but my symptoms aren’t matching the test results,” Beyer said. “Pretty much every doctor I’ve run across has tried to pin it on anxiety first and then they just kind of disregard everything else I say.”
Beyer tested negative for antibodies in May. She said she cried.
“The most frustrating part of this whole thing is there aren’t any answers,” Beyer said. “My primary care physician, she can’t say with certainty that the first test wasn’t a false positive, and she can’t guarantee that the antibody test isn’t a false negative.”
The damage versus the disease
Multiple patients told Business Insider that their primary care physicians have referred them to specialists, including pulmonologists and infectious-disease doctors. But for the most part, those visits haven’t yielded many answers.
“A lot of these patients get turned away,” Dr. Ramzi Asfour, an infectious-disease doctor in the San Francisco Bay Area, told Business Insider. “The infectious-disease doctor says, ‘Well, there’s no evidence of any infection,’ and the oncologist says, ‘You don’t have a blood disorder or cancer,’ and the pulmonologist doesn’t know what you have. So then you’re left in this limbo.”
Asfour said part of his job is understanding infections that don’t fit the conventional mold. He has seen college-aged patients with mononucleosis who have had severe fatigue for two years, or viral infections that trigger a lifelong autoimmune disease like lupus or rheumatoid arthritis. The coronavirus could have similar effects on patients, he said.
Though the virus initially targets the respiratory tract, it can also invade the heart, kidneys, liver, intestines, and brain. That explains why the “big three” symptoms associated with the virus — a fever, dry cough, and shortness of breath — don’t apply to all patients, and why symptoms such as dizziness, headache, diarrhea, and nausea have become additional warning signs.
“There are so many people getting infected that there are going to be a handful that react differently,” Asfour said. Even if coronavirus patients don’t have blood clots or permanent organ damage, he added, their immune system can still go haywire and damage healthy tissue.
“You have to separate the damage from the disease,” Asfour said. “The symptoms are probably coming from an immune reaction.”
But it isn’t always easy for doctors to make that distinction, he added.
“It’s going to be difficult to tell for now what subset is active, ongoing infection and what subset is really just pure immune dysfunction,” Asfour said.
‘When will this end?’
Research suggests that the majority of COVID-19 patients are most contagious during their first week of symptoms, or just before their symptoms start. After about 10 days, the risk of infecting another person appears to drop off. People who test positive after two weeks of symptoms may be shedding dead virus — but it’s tough to tell.
“My infectious-disease specialist tells me that I’m 100% not infectious, but I’m not 100% sure,” a patient in Westchester County, New York, who requested anonymity because she is also a physician, told Business Insider. “I wear a mask in my house still when I interact with my family.”
Two weeks after developing a sore throat and weakness on March 11, the physician went back to work, in accordance with CDC guidelines. She wanted to help treat patients, since her hospital was overwhelmed with coronavirus cases.
“People were dying left and right,” she said. “We had patients that I knew that were 18 and 38 who were intubated.”
But on her fifth day back, she could barely climb the stairs without gasping for air. She and her husband decided to draw up their will.
“I had, again, the flood of emotions of disappointment and anxiety about what will happen. When will this end?” she said. “Will I ever be able to work normally? Will I be there for my children?”
Nothing she has tried in the last few months — meditation, supplements, gentle stretching — has made her feel stronger, she said.
A looming threat of disability or unemployment
Lack of sleep or severe stress can exacerbate a person’s symptoms when infected with a virus.
“We have to look a little bit deeper,” Asfour said. “Was this a person that’s had chronic stress from work? Maybe a successful business, but always on the go, five to six hours of sleep at night, which we know is not enough. And they get COVID and they just have these chronic, chronic symptoms. This can happen after pneumonia.”
When Felecia Jester developed a fever, body aches, and chills on March 11, she was already overwhelmed balancing two jobs as a property manager and private tax accountant. She quickly became so fatigued that her husband had to carry her to the restroom.
“I was stretching myself thin trying to run a property and then run a business,” the 38-year-old told Business Insider. “I was sleeping maybe three hours a night.”
Jester lives in Atlanta with her husband, his parents, four teenage children, her sister’s two children, and her brother who has special needs. Her daughter’s school was one of the first in Georgia to have a teacher test positive for the coronavirus, she said. She suspects that may have been how she got sick, but doesn’t know for sure.
Even though Jester is the only person in her house without any underlying health issues, she’s the only one who developed coronavirus symptoms. Her children are asthmatic, she said, so she’s been using their nebulizer machine to help her breathe.
For the first two weeks of her illness, Jester was able to receive her full-time property manager’s salary through the Coronavirus Aid, Relief, and Economic Security (CARES) Act. After that, she had to file for disability. She has been receiving disability checks since the first week of May.
Jester said she started feeling well enough to work virtually a few hours a day in mid-June. But she worries about how much she can take on.
“That job is very active. I’m up and down. I’m showing apartments, talking to vendors,” she said. “I’m still physically exhausted.”
Many coronavirus patients with long-term symptoms face similar challenges. Beyer said she has taken multiple leaves of absences from her job at the local library. Her boyfriend, who lives with her, isn’t working, either.
“It’s a one-income family and financially, it’s already hard,” she said. “I don’t know how I’m going to make money if I can’t get better.”
Time heals, but not always
One of the most active resources for coronavirus patients is a Slack group started by the queer feminist wellness collective Body Politic. The group’s channel for patients who have been sick for more than 90 days has nearly 5,000 members.
“That group is just the best thing,” Lauren Nichols, a 32-year-old who works for the US Department of Transportation, previously told Business Insider. “It’s good for expectation-setting.”
Nichols said she’s had severe nausea every morning since she tested positive for the virus in March. She joined Body Politic that same month and is now one of its administrators.
The group continues to welcome new members, like Clare Hegarty, a 23-year-old graduate student in Philadelphia, Pennsylvania. She discovered Body Politic less than a month ago. Before that, she thought her case was an anomaly.
Clare Hegarty (left) reunited with her boyfriend (right) after testing negative for the coronavirus in June.
Hegarty developed chest pain and shortness of breath in March. After five or six weeks of feeling relatively back to normal, her symptoms returned in full force.
“It’s been really helpful mentally to know that I’m not the only person struggling with this,” she said. “People write their posts and that’s exactly how I feel — I just can’t explain it in words.”
But Dr. Asfour said it’s difficult to make generalizations about coronavirus cases. Many long-haul patients, he added, could still make a full recovery.
“It’s different for different people,” he said. “Usually time heals. But not necessarily always.”
Hilary Brueck, Samara Abramson, and Dylan Barth contributed reporting.
Read the original article on Business Insider