Every morning, Samantha Cover wakes up and braces for what the day will bring.
For two years, the mother of four has been living with the post-COVID-19 condition known as long COVID, which has limited her abilities to engage in physical activity, process information and work long hours.
If she walks too fast, she starts gasping for breath. Headaches are frequent and her vision turns blurry at times. She suffers from brain fog, fatigue, memory loss and a chronic sore throat.
"I never realized how good it would be to wake up and feel like myself because I haven't done that in two years," Cover, 40, says in an interview. "When I wake up, it just seems to be worse. My head hurts, I can't think straight."
Her three daughters, who are between seven and 13, are also experiencing long COVID symptoms, including anxiety, brain fog and shortness of breath. Her son appears free of symptoms but her husband feels like he's slowed down, she says.
"It's just been a complete change in our quality of life," says Cover, who lives in St. Albert, Alta.
Two years after the pandemic hit, Canadians with long COVID say they often feel frustrated as they grapple with the long-term effects of the virus. Experts, meanwhile, say Canada lacks a centralized system of data collection that could help study and treat the condition.
In Cover's case, her family first got COVID-19 in March 2020 and then got re-infected last September.
Her 13-year-old daughter tested positive again on a rapid test this weekend – despite being vaccinated and wearing high-quality masks – so the household likely has the virus for the third time, she says. Each time, Cover believes her kids brought the virus home from school.
"For a lot of people ... they get sick and then they recover, so they don't really care," she says. "I feel helpless because I feel like the more we get infected, the worse it's going to get for us and I don't know what I can do to protect my family."
Dr. Angela Cheung, a senior scientist at the University Health Network in Toronto, says many long COVID patients "don't feel heard."
To better understand the condition and provide relief to patients, there needs to be a "concerted effort" in establishing special government-funded clinics across the country that provide care and conduct research on long COVID, Cheung says.
"Some countries are doing better than us ... whereas in Canada, it's all very individualized and it's a little bit tricky, in terms of having connected care for these patients," says Cheung, who is researching long COVID and its treatments.
Conservative estimates currently peg the number of Canadians with long COVID at 300,000, Cheung says. That's based on the World Health Organization's estimate that at least 10 per cent of those infected with COVID-19 will experience the condition and the fact that more than three million Canadians have contracted the virus.
Cheung noted, however, that some say the true number of long COVID cases lies between 10 and 50 per cent of people infected, and there are people who recover from long COVID, so the exact count is elusive.
While the symptoms of long COVID haven't changed over time — including fatigue, shortness of breath, abnormal heart rate, brain fog and sleep disturbances — vaccination has helped prevent the condition, she says.
Treatments that can help depend on the symptoms, she says, such as steroid inhalers and nasal sprays for those experiencing a runny nose, congestion and coughing.
But the health-care system is "still struggling" with patients who haven't gotten out of hospital yet due to the long-term effects of the virus, which affects the overall number of urgent surgeries and procedures that can be done, Cheung says.
Sonja Mally, who's had long COVID since spring 2020, feels the health system has ignored her condition for much of the pandemic.
The Toronto-based artist has been suffering from chronic fatigue syndrome, memory loss and issues with her nervous system. She was admitted to hospital during the first wave but says health-care professionals had no answers for her.
"You just ended up looking like a hypochondriac. At that point, I was told not to worry so much and to go home and sleep it off," she recalls.
Mally, 36, says long COVID has prevented her from doing basic tasks like going grocery shopping, and she's been unable to work since 2020.
"I was young and healthy when I got sick," she says. "I really didn't see myself trapped in the body of a 94-year-old at my age."
Jonah McGarva, co-founder of Long COVID Canada, calls long COVID a "mass disabling event."
Although the federal government publicly acknowledged long COVID as a condition in July 2021, McGarva says those suffering from it need "a lot more support."
"With there being no guidelines in place, it creates problems where a lot of the medical community and practitioners aren't as informed as they probably should be," he says.
Dr. Neeja Bakshi, a general internist at the Royal Alexandra Hospital in Edmonton, started seeing long COVID patients at a clinic in January. She says patients asked to rate their quality of life on a scale of zero to 100 largely respond with ratings as low as 20.
"It's impacting their ability to work, it's impacting their ability to function," she said.
"And a lot of these patients have families, have children, so it's really impacting every aspect of their life."
Susie Goulding, who founded COVID Long-Haulers Support Group Canada, a Facebook group with more than 15,000 members, says there needs to be more recognition of long COVID and its impact.
"Canadians who are suffering from long COVID can't suffer for 10 years and wait for the science to catch up," she says. "They need support systems that are set up now."
This report by The Canadian Press was first published March 16, 2022.
This story was produced with the financial assistance of the Facebook and Canadian Press News Fellowship.
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