“There has not been a day since I got diagnosed with COVID that I’ve been like, ‘Oh, I feel good today,’ or ‘I’m 100 percent today,’” said Christine Maughan of Logan.
Despite taking precautions, Maughan was diagnosed with COVID-19 on April 16 — when there were about 2,683 cases in Utah, but less than 50 in the Box Elder, Cache and Rich counties that make up the Bear River Health District.
She’d already been experiencing symptoms for three weeks.
Now, more than eight months later, there have been 250,000-plus cases in Utah — more than 10,000 of them in Cache County — and the 38-year-old is still dealing with physical repercussions despite no active traces of the virus in her system.
“There has not been a day since April that I have felt like I did before I got sick,” she said.
She’s one of an ever-growing list of people who, though considered to have “recovered” from the novel coronavirus, are still not the same.
They call themselves “long-haulers.”
“But how long?” asked Michael May of Lewiston, another long-hauler in week nine of his ordeal. “I don’t know.”
It’s hard to identify exactly how many COVID-19 patients could turn out to be long-haulers, according to medical professionals and researchers. Some studies say it could be 10% of those infected. Other small studies report 93% of cases still experience symptoms months after a diagnosis.
But mostly because of how new the virus is, “there are so many more unknowns than there are knowns,” said Dr. Noah Greenspan, a cardiopulmonary physical therapist in New York.
“We certainly know a lot more than we did three months ago — and we knew a lot more three months ago than we did six months ago or nine months ago — but again,” he said, “we’re really at the very, very tip of the iceberg of what we can comfortably say we know for sure.”
Greenspan started the nonprofit Pulmonary Wellness Foundation to help people suffering from cardiovascular or pulmonary diseases. At the start of the pandemic, his focus was prevention, since the majority of his clients were over 80 years old on top of their preexisting conditions.
Then as more became known about the long-term effects of COVID-19, he opened a rehabilitation clinic in Manhattan, conducted telehealth clinics and offered free “bootcamp” programs for long-haulers like Maughan.
Through the process, the ages of clients his foundation served shifted.
“For the most part, the long-haulers are people in their 30s, 40s and 50s. I’ve had a few people in their 60s, I’ve had a couple of people in their 70s,” he said. “It’s definitely a much younger population that become COVID long-haulers. Very often, it’s the people who have no medical history in the past and in fact were often very healthy, and even athletic.”
Like many others, Maughan considered herself a healthy person prior to the disease, though she had experienced rare occasions of exercise-induced asthma. Maughan and her family used to take advantage of their proximity to Logan Canyon and would go on long walks and hikes.
Now she’s worked her way back up to a mile, and sometimes even that will bring an onslaught of chest pain or shortness of breath. Other times, a simple shower or a phone call can be enough to make her need a break.
It’s the same for Ashley Sheeshley, a 25-year-old graduate student at Utah State University, who needs to take a break after she walks from her apartment to campus. It’s the same for May, a 69-year-old retired Army Veteran. And it’s the same for more than 1,000 others in Utah, alone.
Another struggle the novelty of the disease causes is how to pin down specifics, from things as insignificant as what to call the phenomena now being referred to as “Long-COVID” or “Post-COVID syndrome” to how much time must pass before the diagnosis shifts from “acute” COVID-19 to the drawn-out illness, according to Dr. Brayden Yellman with The Bateman Horne Center in Salt Lake City.
Even the fact that individuals who are still alive three weeks after testing positive are being counted as “recovered” in most databases has led to a misconception on the prevalence of long-term effects of the virus, he said.
But the Bateman Horne Center is not new to studying or treating other post-viral syndromes. In fact, it’s what the nonprofit specializes in: improving clinical care for all those impacted by ME/CFS and FM, meaning myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. Yellman said those are two different names for what is, at its core, the same illness, and in some cases can be traced back to a specific infection.
“What’s really interesting about COVID-19 is it’s following the same path that we’ve seen with these other infectious outbreaks,” said the clinical physician who specializes in rheumatology. “And we’re seeing a lot of parallels between post-COVID and what we’ve seen early in the course of these people who ultimately end up to go on and receive a diagnosis of ME/CFS.”
Like Greenspan, Yellman and others at the center help locals and individuals around the world via virtual services. They both said it’s hard to know what to expect when dealing with a novel virus, but the pattern is concerning.
Similar to how varied symptoms of ME/CFS can present, the long-term symptoms of COVID-19 can range from breathing issues and chest pain to autoimmune disruption, anxiety disorders, gastrointestinal upset and a myriad of other problems.
Maughan now suffers from heart palpitations, fluctuating blood pressure, phantom smells, fever and chills, stabbing chest pain and difficulty breathing, along with the standard debilitating fatigue of Post-exertional malaise.
Sheeshley and May have dizziness and gastrointestinal issues. May has now been diagnosed with Hashimoto’s disease, an autoimmune disorder where the body attacks its own thyroid gland.
Maughan joked, because her symptoms “have been all over the place,” she’s been tested “for pretty much anything else you could think of that is not COVID.”
“But the list of things that I know that I don’t have is very long,” she said. “And it’s still ongoing.”
And the physical issues are just one component.
Mental health issues are prevalent in the long-hauler community, especially feelings of self-doubt and mourning their “pre-COVID” lives.
“It just stands out to me that I definitely took my health for granted before,” Sheesley said. “I took my body for granted before and now sometimes I just feel like I’m trapped, or I’ve just lost the healthy body that I had before. And that can be kind of discouraging sometimes.”
As with other aspects of the pandemic, those who had to take time off work because of their illness can be concerned about money. Even though employment was not a concern for May, the additional expenses of new medications and dietary requirements to control his symptoms adds up. Negotiations over how much monetary stimulus to send, and to whom, that stretched into the week of Christmas have added one more uncertainty to the pile of what people are still trying to figure out about the new virus and the pandemic it has caused.