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Toronto consultant Kim Caughlin has had to make drastic work and lifestyle adjustments because of long COVID.Tijana Martin/The Globe and Mail

Deborah Brown has tried not once but four times to get back to her job in the past year.

The 54-year-old from Fort St. John, B.C. works as an advisor specializing in auto and recreational vehicle insurance. She is also COVID “long hauler” – a term used to describe patients who got ill from the virus and never fully recovered. Ms. Brown became ill in February 2021 and although her case was mild and she got back on her feet quickly at the time, she hasn’t felt the same ever since.

“I was at the top of my game. I was at the point where the company was asking me to train other people. I was making a good commission and it was great but then I got COVID and things changed,” says Ms. Brown, a single mother who also takes care of her elderly mother. “I couldn’t pinpoint what was wrong with me. All I knew was, I could not focus and I could not organize, and I found myself very confused and very scared.”

After pushing herself to the brink at work for three months, Ms. Brown finally crashed at work.

“I found myself sitting at my desk, not knowing how to do certain protocols that I’ve actually trained people on, not understanding certain parts of my job, and I even couldn’t find certain words,” she says. “It was just all of a sudden as if everything became tunnel vision.”

According to the Public Health Agency of Canada (PHAC), the ailments Ms. Brown describes are common symptoms of long COVID or post-COVID 19 conditions, which include debilitating fatigue, brain fog, anxiety and difficulty maintaining focus.

A problem that refuses to go away

It’s no secret that women have borne the brunt of the COVID pandemic, incurring heavy job losses and having to take on additional caregiving duties at home. Now, as the world gradually emerges from the devastation of the last two years, long COVID is casting a shadow over women’s work and family lives, with no clear respite in sight.

Jackie Loree had a nasty bout of the virus in early 2020 and a multitude of problems followed. The 62-year-old bedside nurse, who was working in the respiratory unit of a hospital in Kitchener, Ont., experienced a blood clot in her leg and chronic pain.

“I went back to work. I was supposed to do 12 hours and it was too much for me and I kind of relapsed,” she says. “I missed another couple of weeks and then I told the hospital that I really don’t think I can do the bedside because you’re pushing and pulling and lifting and things like that.”

Her employers have been supportive so far, offering her flexible hours and a less demanding profile, but Ms. Loree doubts she will be able to work till she’s 65 because of the impact on her health.

“It’s been two years of feeling like this and it’s overwhelming,” she says.

Women affected disproportionately by long COVID

Researchers looking at the long-term effects of COVID-19 have found that they seem to affect women more significantly than men. A survey conducted in May 2021 by Viral Neuro Exploration (VINEx), an non-profit group researching brain health, the COVID Long Haulers Support Group Canada and Neurological Health Charities Canada found that women in their middle years – their prime working years – are disproportionately impacted by long COVID, with estimates ranging from 60 per cent to 80 per cent of all reported cases. Out of the more than 1,000 COVID long haulers surveyed across Canada, over 87 per cent identified as women.

Specific to workplace impacts, the survey found that 60 per cent of long-haulers had to take a leave from work; 70 per cent had to reduce their hours; one quarter had to go on disability and 44 per cent were unable to access disability insurance. A follow-up survey and report, conducted one year later, revealed that over 80 per cent said the virus has negatively or very negatively impacted their brain health. More than 87 per cent of survey respondents identified as women.

“The fact that women are disproportionately impacted by the virus aggravates gender inequalities, and leads to health, social and economic consequences,” says Inez Jabalpurwala, Global Director, VINEx. “It presents one more barrier to women’s full participation in the economy.”

Ms. Jabalpurwala notes that because women tend to shoulder the majority of caretaking and household management, the impact of long COVID also extends to the unpaid, and sometimes unrecognized, work they do.

For Toronto-based consultant Kim Caughlin, long COVID has made a significant dent in her family’s finances. Her husband has been off work since January 2021 and her daughter has taken a reduced course load at university and has accommodations due to long COVID and anxiety. Ms. Caughlin herself had to stop working from mid-January to September of last year, then part-time at 15 hours a week.

Though she’s now back to working full time at her business, Ms. Caughlin says she had to scale back.

“If I push myself too hard, I crash. In addition to executive coaching and management training I also do strategy facilitation, but I’ve had to cut back on that,” she says.

Ms. Caughlin has had to make drastic lifestyle changes as well, rethinking her work schedule and making time for self-care.

“There are trade-offs in life in general, but I’m just much more conscious of it now,” she says. “For example, [my husband and I] planted the garden this weekend. Then we take the next day off to rest.”

The future for long haulers

Though she loves her job and her workplace has been very supportive, Ms. Brown is considering retraining at an alternative job that is less taxing.

“With long COVID, it’s so important to understand that you may feel good one day and rip it out at work. But then the next day, you are flat on your back,” she says. “You can’t afford to go to your boss and say, ‘I am doing awesome today, but in three days, I’m going to be off work for a week.”

Ms. Jabalpurwala says there is a great need for governments to establish more multidisciplinary care clinics that can treat the different dimensions of long COVID. There also needs to be increased funding for multidisciplinary research and longitudinal studies in order to advance the understanding of what causes long COVID, she adds.

Most importantly, she says, women need to be heard, believed and supported through this burgeoning crisis.

“We need to bring attention to the stories of people with lived experience and counter the stigma being faced by those who are not believed because the illness is not well-defined and not always properly diagnosed,” says Ms. Jabalpurwala.

She notes that beyond the mental health stress, improper diagnosis can have an impact on an individual’s ability to access unemployment benefits and disability insurance.

When it comes to the workplace, employers have an important role to play, she adds.

“Employers need to provide more support, flexibility and a gradual return to work, for those who are ready to return.”

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