Strange symptoms, flare-ups, weeks-long illnesses for some COVID-19 survivors
More support needed for people with long recovery times, survivors say
Chandra Pasma thought it was strange when she started feeling a burning sensation in her neck and ear canal.
It was March 16, just days after COVID-19 had been declared a pandemic, and the 40-year-old Ottawa resident knew people were being infected across the country. But since her symptoms weren't among those listed for the virus, she didn't think much of it.
Then every single member of Pasma's household started falling ill.
First it was her husband, 44-year-old Matt Helleman, who suddenly felt exhausted. Just days later, the couple's three children — seven-year-old twins and a nine-year-old daughter — started experiencing fevers, sore throats, and fatigue. And around the same time, Pasma's own symptoms ramped up into chest pain and a cough.
"I thought, oh crap," she recalls. "This is COVID."
Like many people with milder forms of the illness, the whole family hunkered down, hoping to get better over a couple weeks at home — not knowing it would mark the start of a months-long recovery, with none of the family members feeling back to normal even now, more than 10 weeks later.
So far, at least 90,000 Canadians have been infected with COVID-19. In some cases, the illness leads to a stay in intensive care or even causes death, with roughly 7,000 people dying to date.
But in most other instances, those suffering from less-severe forms do recover outside the health-care system. What's growing clear, both patients and clinicians agree, is that some of those people wind up facing a long, rocky road to recovery.
'Constant cycle' of new symptoms
A few months back, as the little-understood virus was first spreading around the world, health officials initially described it as a respiratory illness, even weaving that piece into its official name: SARS-CoV-2, referring to "severe acute respiratory syndrome."
Since then, evidence and patient stories have emerged suggesting it actually impacts various parts of the body.
One recent study published in the Canadian Medical Association Journal, for instance, determined that changes to someone's ability to taste and smell are likely a common feature of infection — a symptom first noticed anecdotally by doctors around the world.
Similarly, early notions of a roughly two-week recovery period for mild cases — outlined in a February review of preliminary Chinese data from the World Health Organization — have been questioned by people who say their less-severe illnesses are still taking weeks, if not months, to fully clear up.
Pasma first realized her family wasn't alone after joining a COVID-19 support group called Body Politic on Slack, an online communication platform. The group now includes more than 4,000 people.
There, she met other global COVID-19 sufferers who were also documenting weeks-long illnesses with a strange mix of symptoms.
In Pasma's home, multiple family members wound up having gastrointestinal issues, such as nausea and diarrhea, while she experienced inflammation in between her lungs and chest wall. Then, weeks later, a chicken pox-like rash broke out on her stomach and upper thigh.
"It just went on like that: A constant cycle of new symptoms developing," Pasma said. "One symptom would get better, and I'd start to feel optimistic I was through it. Then something new would set in — something totally random and strange."
She isn't sure where she caught the illness, but said it may have been during one of two business trips to Toronto for her job as a researcher at the Canadian Union of Public Employees in the weeks before her symptoms started.
Like many Canadians early in the pandemic, she wasn't told to get tested by her family physician, who instead encouraged her to just stay at home.
It's an experience echoed by others, who've reported bouts of illness but no positive test result to record their experience as a confirmed case of COVID-19 — an issue more common when testing guidelines in many places like Ontario were initially tied to travel abroad, which now represents the transmission source for less than six per cent of all confirmed cases to date in the province.
Test came back negative
Some now question how many cases are flying under the radar, amid additional concerns over false negatives from COVID-19 tests, which detect the active virus circulating in someone's body, and a lack of access to antibody testing to see if someone previously had the virus, which wasn't approved for use in Canada until May and isn't widely available.
For Pasma, it wasn't until after her symptoms worsened, flaring up a previous bout of pneumonia, that she went to a local hospital and got tested.
The test came back negative. Pasma believes that's because it came so late in her illness — not that she wasn't infected.
"There seems to be zero followup," she said. "I don't know if there would be more follow up if we were acknowledged cases."
Pasma also worries both the media and medical community have painted COVID-19 as far too binary, either on or off.
"You get better in two weeks, or you die," she said. "There's no talk at all about what happens to the people who do not get better in two weeks."
600+ people surveyed about symptoms
Hannah Wei, a Toronto-based design and qualitative researcher who helped launch the Slack channel where COVID-positive people are swapping recovery stories, said most people are lacking "clarity" about how COVID-19 plays out beyond the most critical cases.
Like Pasma, Wei also believes she got the illness back in March, likely after travelling abroad to Taiwan. But she didn't get tested after she returned to Canada because she said hospital staff in Vancouver, where she was staying for a client meeting, told her they were short on nasal swabs.
Wei said she was sent back to her Airbnb room with just a sheet of paper featuring COVID-19 information from the hospital's website. She wound up stuck there with no followup until she tested negative weeks later before finally flying back home to Toronto.
"There's no centralized way to track and monitor how we're all doing," she said.
To give sufferers more insight into the spectrum of symptoms and recovery time frames, Wei's team surveyed around 640 people from both their online channel, which is primarily younger adult COVID-19 sufferers, and other social media platforms.
Many respondents shared similar experiences of weeks-long recoveries, with some stretching beyond a month, and featuring a range of symptoms — including respiratory issues, gastrointestinal problems, and sometimes neurological symptoms like dizziness, trouble concentrating, insomnia, or just a general feeling of "brain fog."
"When we ran the survey, people were on, on average, their 40th day," Wei said. "A lot of these people, they're getting to the point where they're not quite recovering, but they're not severely sick in the bed either. They just can't get back to their normal life."
Patients calling for more followup
Wei and Pasma both say the medical community needs to focus more on these under-the-radar patients.
Ontario family physicians who spoke to CBC News say thanks to the rise of telemedicine, it's easier to keep in touch with COVID-19 patients who don't need hospital care. Still, treating them remains a challenge given the wide range of symptoms and length of illness.
It's a mixed bag, according to Markham-based family physician Allan Grill.
"You can have patients with mild symptoms that recover in a few days, like less than a week," said Grill, who is chief of family medicine at Markham Stouffville Hospital and lead physician at the Markham family health team.
"You can have other people where the symptoms last two or three weeks."
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Pasma said the digital divide between patients and care providers can leave people feeling isolated as they recover at home.
As she and her family slowly get their lives back, she's hoping more physicians grow aware of the challenging recovery process many COVID-19 sufferers are experiencing — so they can give newly diagnosed patients a heads up on what to expect, and help them manage the possible weeks ahead.
"Just because you're well and don't die from pneumonia doesn't mean you won't spend three or four months of your life trying to recover from this virus," she said.