Jennifer Hunter was training for a half-marathon before she got the coronavirus; now, by the end of a normal day teaching in the classroom, she’s “completely exhausted.”
Lisa O’Brien became so sick she contemplated sleeping in her car outside of the emergency room, “because my body couldn’t regulate anything and it felt dangerous being inside my body.”
And 41-year-old Tressa Smith even wrote her will, expecting that she wouldn’t outlive the virus.
“I thought I was going to die,” she said. “It was one of the worst things I’ve ever been through.”
The women are far past the three-week period after which the Utah Department of Health considers patients to be “recovered.” But they say they are among the thousands of coronavirus patients who have had prolonged impacts from COVID-19, and describe symptoms ranging from extreme fatigue and shortness of breath to racing hearts and neurological issues.
Now, they’re on a mission to raise awareness about their symptoms in hopes that doctors in the state will be better equipped to help them and others like them manage their mysterious ailments.
“Most people here in Utah still don’t know about us,” O’Brien said.
The 42-year-old Roy resident believes she picked up the coronavirus in early March during a trip to Hawaii. Initially, she attributed the fatigue and shortness of breath she felt upon her return to jet lag. And because she didn’t have all the symptoms required for coronavirus testing at that time, she didn’t think to get tested.
By the time she did go in for a swab, she tested negative.
That’s made it difficult at times for O’Brien, who said she wasn’t taken seriously by the doctors and nurses she visited early on — even though she said her symptoms are the same as those faced by other COVID long-haulers and she’s been accepted into a research study on the long-term impacts of the coronavirus at Mount Sinai, a New York City-based health care system.
In one instance, O’Brien said a nurse at the emergency room dismissed her when she came in begging for a blood test related to her symptoms.
“She’s like, ‘I really think this sounds like anxiety,’” O’Brien recounted. “You know, [she] asked me if I had people I could talk to — family, friends. And I just glared at her. Because I know there’s thousands of us going through it.”
‘Learning as we go’
Dr. Dixie Harris, a critical care and pulmonary medicine physician at Intermountain Healthcare, said the medical response to COVID-19 long-haulers in Utah is behind that in other states, like New York, that had outbreaks earlier. But doctors here are beginning to understand the long-term effects of the coronavirus, she said.
Harris said she’s personally seeing multiple post-COVID-19 patients a week. The ones that get to her typically have shortness of breath, heart racing and chest pains, but some also report joint pains, muscle aches and memory loss.
The main symptom, she said, is extreme fatigue.
“They’ll go do an activity like, ’I’m going to go for a walk around the neighborhood,’ and next thing you know they have to sit for the next three hours recovering,” Harris said in an interview. “They have to be so careful with not pushing themselves too hard. I tell them, ‘This is going to take time. You’re allowing your body time to recover, time to rest. Don’t push too hard.’”
Smith, who was diagnosed with the coronavirus toward the end of April, says she was full of energy before she tested positive. Now, the West Haven resident finds it difficult to get out of bed.
“Most days I get up two minutes before I have to clock into work, and as soon as I’m off work, I get back in bed,” she said. “My kids are fending a lot for themselves for dinner. They’re in junior high, so they’re old enough to do that. Besides going to the doctor, I haven’t left my house in weeks.”
Harris said that research shows about 10% of patients have prolonged symptoms of COVID-19 and that many need supportive care. Based on those estimates, there would be about 5,000 Utahns facing weeks or even months of health challenges as a result of the coronavirus.
But the research on the novel virus is still out on many fronts, Harris said — including why some people become long-haulers, what the long-term effects of the coronavirus are and how long these patients will be sick.
“We’re just in the process of learning as we go,” she said.
Conventional wisdom about the coronavirus is that older adults and people with preexisting conditions are at particular risk of negative impacts from the illness. But the Centers for Disease Control and Prevention now notes that “recovery from COVID-19 can take a long time, even in young adults with no chronic conditions.”
A recent multistate survey of symptomatic adults interviewed two to three weeks after a positive coronavirus test showed 35% had not returned to their usual state of health, the CDC states on its website. Among those ages 18 to 34 with no chronic medical conditions, 1 in 5 had not returned to normal.
O’Brien and Smith are both in their early 40s and didn’t report significant preexisting conditions before getting the coronavirus. Hunter, who’s 39 and tested positive for the virus in mid-June, said she has an autoimmune disease that COVID-19 has exacerbated but that she lived an active lifestyle before her diagnosis.
And though they are all well beyond the three-week period for which the state considers them “recovered,” they say their lives are far from back to normal.
Utah Department of Health spokesman Tom Hudachko wrote in an email that the state recognizes there is a “broad range of symptom severity that infected people may experience; from no symptoms at all, to severe symptoms that may persist for many weeks or even months.”
The state’s definition of “recovered,” he said, follows national definitions and is “in no way meant to [imply] all people will fully recover within three weeks of their initial diagnosis.”
More than 45,500 Utahns currently fall under that definition of recovery.
While some doctors and nurses were quick early on to dismiss O’Brien’s symptoms as anxiety or the product of an overactive imagination, she said she found solace and information in at least one space: online support groups on Facebook.
Her symptoms matched those faced by the rest of the group, but she says her “positive diagnosis” — the point at which she felt sure she’d had the virus — came when she noticed a blood clot in her arm in week 12.
After several appointments with doctors who dismissed her, O’Brien eventually received a CT scan that showed a small clot in her lung.
“So basically the support groups kind of saved my life, because had I not had them to tell me what tests to get, who knows,” she said. “Maybe I could have got more.”
O’Brien in June created the Utah COVID-19 Long Hauler group on Facebook, a private page that currently has more than 300 members. It’s a space where people can talk about their symptoms and where those who have been dealing with the effects of the virus for longer can provide insight into what might be in store for those who are just beginning down that road.
Members also often share information about which providers have “believed” them and which have dismissed them, O’Brien said, noting that the latter number is growing by the day.
Harris, with Intermountain Healthcare, said she encourages her patients to engage with support groups but cautions them to take everything they read with a grain of salt, since those spaces are not moderated by professionals.
“It’s just nice to know you’re not alone and other people have had this,” she said. “I think that’s important.”
Grappling with an illness that no one understands can be challenging, said Hunter, a South Ogden resident who was diagnosed with the coronavirus in mid-June. The support groups have provided a place to connect with others and share information — as well as an opportunity to feel less alone, she said.
The groups have been especially important as Hunter said she’s had to distance herself from friends who don’t believe her when she talks about her symptoms.
“I’ve had some that are claiming I must have had a bad flu,” she said. “And I keep trying to tell them I’ve never had the flu give me pulmonary embolisms or infect my heart or do the things this virus is associated with.”
As COVID-19 has become politicized, some of the long-haulers hope their stories will send a message to other Utahns that they should take the disease seriously and take proper precautions, like wearing masks and social distancing, to avoid getting sick.
Harris said she’s talked with some patients who were quick to dismiss those simple precautions and the potential that they would face negative impacts from the virus.
“Until they were sick, they didn’t think it was any big deal,” she said. “They thought, ‘whatever,’ and they minimized it — and once they got sick they’re now, like, a believer.”
O’Brien fully supports mask wearing but said she doesn’t get into arguments with people who don’t, believing that the issue has become too politicized to change anyone’s mind.
“I just share my story,” she said, “and by sharing my story there have been people that are like, ’Oh, I didn’t know what was happening, now I look at it totally different.’”
As she grapples with the effects of the disease on her life, Hunter said it’s been particularly difficult to see the case and death numbers rise each day — topping 53,800 positive tests and exceeding 415 deaths in Utah as of Friday.
“I’ve heard people say, ’Well, it’s not that bad,’ and I’m just wondering: What number is an acceptable number of deaths and people getting sick?” she asked.
Smith said her emotions range from anger to sadness when she continues to hear from people who don’t believe in the coronavirus or who liken it to a common cold or flu. But more than anything, she said, “I would love to sit down with them and talk to them.”
“It isn’t any way to live and even if people think it’s just like the flu or you just get sick, there’s a big number of those who have recovered, it’s not really recovered,” she said. “It can affect you and affect everything. It’s changed my entire life.”
Correction: Updated Sept. 7 at 4:38 p.m. >> Lisa O'Brien was the creator of the Utah COVID-19 Long Hauler group on Facebook. A previous version of this story stated otherwise.