Shopping at a greenhouse with her father left Beth Wood unable to leave her Halifax home for days.
“It’s Wednesday, and I can barely get out of my chair still,” the 63-year-old said, two days after the trip. The day before, she was too tired to cook her usual frozen meals and opted for Popsicles instead.
But the exhaustion did not concern her.
“It’s predictable,” she said. “I knew that that would be what I’d be doing this week.”
Such has been Wood’s life since first experiencing long COVID symptoms in 2022. She was formally diagnosed with long COVID in 2024, the same year she officially stopped working, ending a more than 30-year career in social work and community development.
Government estimates peg the number of Canadians experiencing long COVID symptoms at 2.1 million, although it last collected this data in June 2023.
And yet, despite the high numbers, doctors and researchers say public interest in the condition is low.
“Most people want to not think about [COVID] anymore,” said Dr. Satish Raj, a Calgary cardiologist who regularly sees long COVID patients and University of Calgary professor. “People want to move on.”
But for Wood and those like her, moving past the virus is impossible.
Wood can no longer go for long walks or drive for long distances. At home, chores take longer. She relies on frozen meals because she does not have the energy to cook.
Since leaving work, she has relied mainly on government disability support programs. Her weekly Sunday visits to her parents’ are her main social activity.
“It’s very isolating,” she says of living with long COVID.
Research into long COVID is ongoing. In March, for instance, researchers at McMaster University found that the antidepressant fluvoxamine can help relieve fatigue for long COVID patients.
But patients still struggle to find appropriate health care while researchers search for answers.
‘A moving target’
The difficulties of treating long COVID stem, in part, from the condition itself. No consistent definition exists.
“Having one universal definition of long COVID is key,” said Kelly O’Brien, co-director of the Rehabilitation Science Research Network for COVID at the University of Toronto’s Temerty Faculty of Medicine.
According to the World Health Organization, long COVID occurs when COVID symptoms continue three months or more after an individual’s initial infection, or if new symptoms develop without any other explanation. Symptoms must last two months or longer.
Canada uses a similar definition, but does not specify how long the symptoms must last.
Right now, long COVID is diagnosed by “ruling out” other causes for a patient’s symptoms, says Dr. Grace Lam, an assistant professor in the University of Alberta’s department of medicine who researches long COVID.
More than 200 symptoms are associated with long COVID.
Common symptoms include difficulty concentrating, chronic fatigue, or post-exertion syndrome, where a person experiences debilitating exhaustion days or weeks after an activity. Others include headaches, joint and muscle pain, breathlessness, impaired sleep, and anxiety or depression.
But many conditions can cause these.
It can be difficult to determine with perfect accuracy if COVID caused someone’s symptoms, says Lam.
“Can we be 100 per cent sure that a super rare uncommon thing could be driving [a patient’s symptoms]? No, we can’t.”
Long COVID shares similarities with other post-infection syndromes, like Lyme Disease, says Dr. Angela Cheung, a professor at the University of Toronto’s Temerty Faculty of Medicine.
Cheung helped create Long Covid Web, a directory of long COVID resources, and also runs observational studies and clinical trials on the condition.
“There are some similarities [to other post-infection syndromes], I would say, but it’s not exactly the same thing.”
There have been over 180 published clinical trials into medical treatments for long COVID, says Cheung. But medical treatments are “not the end all and be all,” she adds.
Occupational and physical therapy are some of the best treatments for long COVID, although they are not cures, says O’Brien, a physiotherapy professor at the University of Toronto’s Temerty Faculty of Medicine.
The impact of long COVID can change over time. “Living with long COVID is a bit of a moving target,” said O’Brien, who also holds a Canada Research Chair in episodic disability and rehabilitation.
Episodic disabilities are health-related challenges that can impact a person’s ability to perform daily living tasks, and have physical and cognitive symptoms that fluctuate. Many long COVID patients experience this, she says. They learn to pace themselves, manage their energy, and avoid activities that could trigger their symptoms.
But accessing the therapists who can teach those strategies can be difficult. Not all physiotherapists or occupational therapists know how to work with long COVID patients in a way that does not exacerbate their symptoms.
Specialty long COVID clinics can be difficult to find, sometimes because governments no longer fund them. Many that exist are private, meaning patients must pay out of pocket — a difficult requirement for many, especially for those forced out of work.
“There are places, but it’s all private,” said Lesley Stoyan, who was diagnosed with long COVID in spring 2021. Stoyan, 55, is a former high-performance athlete and coach who had to stop working in 2023 because of long COVID.
She manages her illness with an athlete’s dedication: taking medications on schedule, practising tai chi, deep breathing and meditation. But she knows she is lucky to be able to do physiotherapy and have the support of her family.
Long COVID is lonely, and not just because it has shrunk her social circle.
There is not a lot of public awareness about long COVID, or foundations that are dedicated to studying it, says Stoyan, from her Toronto home.
She often hears people in long COVID support groups say they wish they had another disease, like cancer, for which there is more public awareness and research.
“You know something’s really awful when people are wishing that they had a different disease,” she said. “Nobody should be wishing that they get cancer.”
‘A big tent’
There is a trend among some medical researchers to include long COVID research as part of broader research into other post-infection syndromes or complex chronic conditions, like chronic fatigue syndrome or fibromyalgia.
“I think more and more we’re going to see [long COVID] coming under a rubric of a post-infectious syndrome,” said Raj, of the University of Calgary.
That approach has some advantages, says Lam, of the University of Alberta. “A big tent is great, because then people [with other conditions] get awareness,” she said.
But it can have downsides. If people with various post-infection syndromes are included in the same medical studies, it can be hard for researchers to determine which treatments best address specific conditions.
Dr. Jane McKay, a B.C. doctor at a clinic that specializes in long COVID, chronic fatigue and fibromyalgia, says health authorities need to fund clinics that specialize in treating people with post-viral conditions.
Her clinic, which is publicly funded, includes various types of health professionals and offers virtual care, a critical option for people who may not be able to leave their homes.
“There needs to be a multidisciplinary approach, and the funding agencies need to recognize that this is a significant health burden,” she said.
Lam says she understands why long COVID patients may feel forgotten, given the slow pace of medical research. But she is confident things will improve.
“The medical community at large and the research community at large have not forgotten about long COVID,” she said. “There is a lot of hope in the dark.”
Cheung, of the University of Toronto, regularly sees long COVID patients recover.
“I see it every week,” she said. Many patients have returned to levels of functioning that are close to what they had before their COVID infections. Some have returned to work or to their athletic pursuits.
Over the years, Beth Wood, in Halifax, has seen some improvements. She can climb more stairs without losing her breath. She still volunteers at a food bank, although now in an administrative role. She sleeps all day when she comes home, but she is building up her endurance.
Summers can be difficult. Before long COVID, Wood spent much of her time at the beach. Now, beach days are exceedingly rare: she does not have the energy to drive herself there and back.
But she can be thankful for the beaches she has visited around the world. Photos of them decorate her walls.
“I’ve seen some of the best beaches in the world. And so, I’m not going to moan and groan that I can’t go to the beach,” she said.
“It’s unfortunate I can’t go to the beach. It bothers me, but I can still live.”
