Canadians with long COVID: Sick and, increasingly, worried they’ll go broke

"I have memory issues, it takes me a while to retain information or follow up conversation or I misspell words constantly," says the North Vancouver-based consultant.

Patino, once a competitive swimmer who represented Canada at the FINA World Aquatics Championship, says she's been housebound for more than six months. Minor physical or mental exertions lead to debilitating exhaustion or violent headaches. Carrying out her job, she says, is impossible.

But while Patino says her employer has been very supportive, getting her long-term disability (LTD) insurance claim approved is taking longer than expected. Patino, who has exhausted her short-term Employment Insurance (EI) sickness benefits, says she was hoping her LTD coverage would kick in around a month after she filed the claim in early April. Instead, the insurance company keeps coming back with new requests for medical records, she says.

In the meantime, Patino says her financial situation is rapidly deteriorating. After raiding her personal savings, she had to borrow from her mother. Her friends raised funds through a GoFundMe account.

But if her workplace benefits don't come in soon, she says she'll have to start selling some of her possessions to make ends meet.

"We don't have anything else to rely on

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More than half of COVID-19 patients might be suffering from long-term symptoms more than 12 weeks after testing positive, according to a new review by the Public Health Agency of Canada. To date, 1.39 million Canadians have contracted the virus and survived, according to official statistics.

But many of the country's COVID long-haulers say they're falling through the cracks of both private workplace insurance benefits and government income supports.

Only 12 million Canadians have disability insurance, according to the Canadian Life and Health Insurance Association. But even those who, like Patino, have coverage, aren't necessarily able to access the benefits when they suffer from long-term COVID symptoms, also known as long COVID.

The lingering effects of the virus manifest as a bewildering array of symptoms. The common ones include fatigue, difficulty breathing, cognitive problems often described as "brain fog," cough, muscle pain or headache, sleep problems, cardiac issues and trouble sleeping.

But long COVID has all the hallmarks of an illness for which it's difficult to claim workplace disability benefits. What's causing those often debilitating symptoms doesn't always show up in diagnostic testing. Patino, for example, says she has undergone a barrage of tests, most of which came back normal. Only a few tests revealed issues with her lungs, blood and heart, she says.

"It's an invisible illness, it's much like ... chronic fatigue syndrome, (that is) myalgic encephalomyelitis," says Susie Goulding, a floral designer based in Oakville, Ont. She's a COVID long-hauler who founded COVID Long-Haulers Support Group Canada, which has almost 14,000 members.

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Many COVID long-haulers in the group have been denied long-term disability benefits, she says.

"People are being turned away because they just can't prove it in black and white on paper that they are as ill as they are saying that they are," she says.

Because there is still little research around long COVID, it's easy for insurance companies to dismiss disability claims due to "insufficient medical evidence," says Nainesh Kotak, a Mississauga, Ont.-based disability and personal injury lawyer, who has recently been retained for a long COVID case.

"It's no different than dealing with a chronic fatigue case or even a chronic pain case. What is more difficult, though, is certainly the newness of the impairments," he says.

It's important for long COVID sufferers to build medical evidence by relying on their family physician to record their symptoms and provide referrals to specialists as needed, Kotak says.

"The important thing, of course, is to have your physicians as an ally," he notes.

But that's often a challenge for long-haulers in Canada, where not everyone has access to a family physician. The head of the Canadian Medical Association recently called on the federal government to boost access to family doctors for long-haulers.

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In the absence of that, long-haulers should consistently use the same walk-in clinic for appointments, which makes it easier to gather evidence, Kotak says.

But besides providing a full picture of long COVID patient's symptoms, it's key that doctors identify how the condition limits the patients' ability to function in their jobs, he adds.

Still, it doesn't help that, unlike the U.K., Canada has yet to establish a clinical definition of long COVID.

And some long-haulers face yet another mystifying obstacle: they can't prove they ever had COVID-19.

Many long-haulers who caught the virus in the first wave, when Canada was rationing a limited number of available tests, don't have a positive COVID-19 test result to show for it, Goulding says. For example, many COVID-19 symptomatic patients weren't given tests if a family member had already tested positive, she adds.

"They were assumed to have a positive case as well, but then they didn't get a positive ... test, so then they're left trying to prove themselves," she says.

For those who don't have or can't access long-term disability benefits, there's little in the way of a social safety net.

Chantal Renaud says she began suffering from crippling symptoms, including severe difficulty breathing, tachycardia and profound fatigue in April 2020. When her LTD insurance claim was rejected, she says she accessed EI sickness benefits. But after exhausting the 15-week maximum eligibility period for the program, she says she found herself without any income.

In the end, Renauld says she was forced to sell her house to survive financially.

"I have financially contributed to this country for more than 32 years and I should never have lost my house because I fell ill," Renaud recently told the House of Commons' Human Resources committee. "No Canadian should ever have to experience that."

Renaud had been called to testify about Bill C-265, a private member's bill sponsored by Bloc Quebecois MP Claude DeBellefeuille proposing to extend the maximum period for receiving benefits to 50 weeks.

Federal budget legislation recently extended the maximum number of weeks for receiving EI sickness from 15 to 26, but the changes are expected to take effect only in the summer of 2022.

The office of Human Resources Minister Carla Qualtrough did not respond to a question about whether the federal government is considering a further extension of the maximum benefits period.

"The Government of Canada recognizes that this continues to be a difficult time for many workers in Canada. We will continue to monitor how the labour market rebounds and the needs of Canadians as we move forward on the path to recovery," Employment and Social Development Canada said via email.

Patino, for her part, says she's hoping her story helps people and policymakers appreciate the impact of long COVID.

"I want people to take this seriously and I want the government to take us seriously."