The Current

Host of symptoms, variable recovery times complicate return to work for those with long COVID

Jessica Sewell was working as an administrative assistant in Burnaby, B.C., when she contracted long COVID last June. Her unpredictable symptoms have made it difficult to know whether she'll be able to work from day to day.

Employees and employers often left in limbo, not knowing if someone can work from day to day

Jessica Sewell, an administrative assistant in Burnaby, B.C., has been battling long COVID since last June. Her unpredictable symptoms have made it difficult to know whether she'll be able to work from day to day. (Submitted by Jessica Sewell )

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Jessica Sewell has been on and off work since she developed long COVID last June, fighting the disease's symptoms, which she describes as "volatile."

"I can be OK today and able to do my job, but I get a cold and I have a two-week flare-up," said Sewell, 28, an administrative assistant in Burnaby, B.C. 

Sewell contracted COVID-19 last May, and was very sick, but said she felt well enough to return to work after her 14-day isolation. Three weeks later, she began to experience brain fog, dizzy spells, extreme fatigue and tremors. Her heart rate would shoot up to 200 beats per minute, even while standing still. 

Sewell was assessed at a long COVID clinic in July. In the weeks leading up to her diagnosis, she tried to keep working because taking time off felt like "defeat," she said.

But, "the more you push, the more [long COVID] pushes back, and it always wins," she said.

Unclear timeline for recovery

More than 200 symptoms are associated with long COVID, affecting the brain, heart, lungs and blood vessels, according to a 2021 study published in the Lancet. The World Health Organization says symptoms can appear up to 12 weeks after even a mild infection, and can persist for months, but also "fluctuate or relapse over time."

Doctors are grappling with how to treat patients, but there is no known cure. 

WATCH | Doctors strive to solve long COVID as patients struggle: 

Doctors search to solve long COVID as patients fight to recover

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Nearly two years into the COVID-19 pandemic, doctors and health experts are searching to find a cause and treatment for long COVID, while patients are simply fighting for their recovery.

Some experts fear the recent surge of infections in the Omicron wave could translate into a swell of long COVID cases in the coming months. That could have a "knock-on effect" for Canadian workplaces, in terms of illness, absences, and helping workers get back on their feet, said Peter Smith, senior scientist at the Institute for Work & Health, which studies the health and safety of working Canadians. 

He pointed to pre-Omicron research that showed roughly 10 per cent of COVID-19 recoveries developed into long COVID, suggesting 170,000 Canadians were already living with the disease last fall. It's not known whether Omicron is linked to long COVID at the same rate, but Health Canada has recorded more than 1.2 million confirmed cases of COVID-19 since the first Omicron cases on Nov. 28. (Testing issues mean many more cases may be unrecorded).

Smith said the disease might be difficult for some bosses to grasp, given the variety of symptoms, the way it flares up unexpectedly and the unclear timeline for recovery.

But he said, "it's a missed opportunity [for employers] not to enable these people to come back to the workplace."

It's a missed opportunity if employers don't help to accommodate long COVID sufferers who want to come back to work, said Peter Smith, a senior scientist at the Institute for Work & Health. (Submitted by Peter Smith)

Before getting sick, Sewell says she was a hard worker with plans to further her education and seek promotion. But while her employer has been understanding, she fears this time off is harming her career prospects, and feels in limbo, not knowing if she can work from day to day.

"It makes it hard to be that dependable employee that I'm used to being," she told The Current's Matt Galloway. 

Burden of proof is a problem

Another woman who spoke to The Current was working at a Toronto bank when she caught COVID-19 in March 2020. CBC has agreed not to name her because she fears she could face repercussions for speaking out about her employer. 

She was unable to confirm the infection due to testing limitations at the time. But when unexplained symptoms — including dizziness, headaches, chest pain, muscles spasms and nausea — flared up in June 2020, her doctor diagnosed her with presumed long COVID. 

By August, she was too ill to work. But when her employer insisted on proof of the original infection, she didn't have it.

"My doctor had tried her best to support me, but she wasn't able to provide the evidence," she said. 

She enlisted a lawyer, who helped her secure long-term disability support through her employer's provider.

It's time to act for all these people suffering from these debilitating conditions.- Simon Décary

Simon Décary, a professor of rehabilitation at the Université de Sherbrooke, said this burden of proof could become a problem, because testing capacity collapsed during Omicron.

While the required proof varies by workplace, Décary thinks employees with long COVID shouldn't need a positive PCR test result to prove they were previously infected with COVID-19. Instead, health-care providers could be trained to diagnose long COVID based on the WHO definition, with that diagnosis accepted by employers, he said. 

Criteria for claims changing in Ontario

On Friday, the Workplace Safety and Insurance Board announced that Ontarians who believe they contracted COVID-19 at work can make a claim without a positive PCR result, but should try to get a medical opinion or rapid test to confirm their infection. 

Workplace compensation boards around the country vary on this requirement. The Saskatchewan Workers' Compensation Board insists on a PCR test confirming the original diagnosis; while in Quebec, CNESST stipulates that priority workers who can access PCR tests will need one for a claim, but workers who cannot access PCR tests will have their claim assessed in "good faith."

Up to Dec. 31, the WSIB has approved 31,363 claims related to COVID-19 workplace infection. The Current asked how many of those claims are related to long COVID symptoms, but the organization did not provide a figure.

In a statement, the WSIB said it provides financial support until workers are "safely able to return to work," and that 86 per cent of claimants did so within 16-30 days. 

"If people experience symptoms after they have recovered and returned to work, they could come back to us to see if they are eligible for additional benefits," the statement continued. 

WATCH | COVID-19 long-haulers adapt to new normal:

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As Ontario slowly reopens, COVID-19 long-haulers are still trying to adapt to their new normal. Ismaila Alfa spoke with Amara Possian about her struggles with the disease. This is the second installment of a Metro Morning series exploring how the pandemic has changed people — and what comes next.

If infected outside the workplace, workers across Canada might be left to rely on their employer's paid sick days or health-care benefits, before applying for up to 15 weeks of employment insurance from the federal government

In B.C., Sewell used up her sick days, then applied for provincial financial support. But a backlog in processing claims meant she had to dip into her savings.

"You're supposed to be trying to stay stress-free … it's hard to do that when you're slowly watching your savings dwindle down to nothing," she said. 

Décary thinks the federal government should recognize long COVID as potential grounds for disability, to help patients access appropriate supports.

"It's time to act for all these people suffering from these debilitating conditions," he said.

In a statement to The Current, a spokesperson for Employment and Social Development Canada said the federal government "has a number of programs and services that provide financial assistance and help advance the inclusion and participation of persons with disabilities."

"Eligibility for these programs is not determined on the basis of a particular disease, diagnosis or condition alone," the statement read.

Return to work needs communication, flexibility

In Toronto, the bank worker is still off work nearly two years after contracting COVID-19. She suffers from fatigue, heart palpitations and muscle cramps. She said her employers hired someone to fill in for her temporarily, and told her that she can return when she's well enough, but she doesn't know when that will be.

She said that alongside coping with her illness, she had to cope with "the stress of knowing that my employer felt that I wasn't ill enough to be off, when I couldn't even get out of bed."

Smith said "trust on both sides" is key to a successful return to work for those suffering from long COVID, and it takes flexibility and frequent communication. In light of testing issues during Omicron, he thinks "we should focus less on the condition and more on what the symptoms are."

Simon Décary, a professor of rehabilitation at the Université de Sherbrooke, said more should be done to help Canadians living with long COVID. (Submitted by Simon Décary)

That means patients could discuss their daily work with health-care providers, who could pinpoint what parts of their job might still be doable without inflaming their symptoms, he said.

Workers could then communicate clearly to their employers: "'This is what I can do. This is what I've been told I can't do,'" he said.

The employer could also consider temporary assignments, and try to give employees autonomy and flexibility over when tasks are completed.

Sewell contracted COVID-19 for a second time in December. But after a mild infection, she returned to work this month.

She wants employers to "lead with empathy," and understand that the illness may be very limiting for staff.

"[Working] may be the only thing they're going to do that day. They may be sacrificing going to their kid's activity, or taking a shower, or having a home-cooked meal for their family," she said.

"If we're choosing work and being at work, just understand what that really means."

Written by Padraig Moran. Produced by Alison Masemann and Joana Draghici.

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