Lack of support for long COVID patients leaves N.B. woman feeling 'abandoned'

Sonia Aubé, a social worker with the Department of Social Development in Bathurst, feels like she has gone from hero to zero in the span of a year.

In early 2021 she volunteered to be part of New Brunswick's rapid outbreak management team in her region. Comprised of different health-care workers, the team, also known as a PROMT, is deployed to long-term care homes and other vulnerable settings when a COVID-19 outbreak happens.

Aubé, 51, says helping others is a big part of her job and her personality and she stepped up right away.

"This is my calling — and I really thought I could help … but then I got COVID."

Aubé hadn't yet received her first shot, when she responded to the outbreak at an Edmundston special care home on Jan. 22, 2021.

She tested positive for the virus 10 days later and was quickly isolated at a chalet near her home in Petit-Rocher. Her symptoms included a loss of taste and smell, fever, fatigue and body aches but never anything serious enough to require hospitalization.

"I was followed by Public Health for the whole two weeks," Aubé said. "A lot of people came to bring me gifts and food — you know, on the porch — and came to see me through the windows."

She felt supported by her employer and fully expected that her health would return, and her life would go back to normal.

"But let me tell you, when I got out of the chalet and came back home, I felt like the world just gave out on me."

Long COVID unknown

At the time, Aubé had never heard of long COVID. She had no idea why she was developing new symptoms that included brain fog, headaches and the feeling that she was spinning. She kept telling herself that if she could go back to work and get back into her routine, she would be fine.

On her first day back, she was proud of herself and felt her co-workers were proud of her too.

"They made this line of applause … because they thought I was a hero. You know, going there and then getting COVID and then coming back to work."

That feeling didn't last. Aubé found herself lost in her tasks at work, unable to do the job she had done for 25 years.

By the third day, her co-workers were so worried that they called Aubé's daughter to come and get her.

Her family doctor wasn't available to see her, so Aubé went to the emergency room. The doctor there suggested she could have post-COVID symptoms. That was the first time she had heard of long COVID.

"The doctor didn't know what to do with me, and he said, 'I'm sorry, I know you got COVID, but I don't know anything about COVID. You might as well go and check online and see what's going on because it's the best thing you and me can do.'"

Mount A prof leads long COVID study

Prof. Vett Lloyd said that response was common early in the pandemic.

Lloyd, who teaches biology at Mount Allison University, is leading a study into long COVID. In the past year, more than 800 people from across Canada have completed an online survey about their experience with long-term effects of the virus.

Fatigue, brain fog and constant pain are the common symptoms.

Lloyd said the other themes that run through the responses are the "horror" of being diagnosed and not getting better, and the slow response of the health-care system.

"You have people who have been healthy — they're working, they're employed and all of a sudden they can't get better and they're having trouble looking after themselves," Lloyd said. "That's devastating on so many levels.

"The other thing that stood out is initially the response from the health-care system was not that helpful and in many ways, antagonistic."

Lloyd said the health-care system isn't well-designed to help people with multi-systemic illnesses such as long COVID. Even for those lucky enough to have a family doctor, the process of seeing multiple specialists is very slow.

Call for better long COVID support in N.B.

CBC News asked the Department of Health what supports are in place for New Brunswickers who are suffering with post COVID symptoms, whether those patients are being tracked, and whether there is a doctor leading their care.

No one was made available for an interview. In an email spokesperson Bruce Macfarlane did not answer any of those questions. 

"The long-term effects of COVID-19 are still not widely known," Macfarlane wrote. He went on to say continuing research will "address many outstanding questions" and that the health authorities have "enrolled patients into a collaborative registry study to better understand the impacts of COVID-19 on New Brunswick patients."

Aubé is participating in two studies but said answering a survey and taking part in interviews with researchers aren't helping her to get better and get back to the job she loves.

"You're left all by yourself. What do you do? There's no clinic in New Brunswick. There's no support other than my family doctor that took it upon herself to make sure that she was very well equipped with the medical information that she could get."

Being at home and feeling that others don't believe your symptoms is lonely, Aubé said.

"My self-esteem has gone so low. And I don't even know if I have the capacity to do the job that I used to be able to do."

83 COVID claims approved by WorkSafe

One of the biggest blows in the past year came when WorkSafeNB turned down Aubé's claim for long-term compensation. She received about three months of compensation.

A letter from WorkSafeNB dated Nov. 29, 2021, which outlines Aube's case, states, "It is quite certain that Ms. Aubé acquired COVID 19 in her occupational setting."

However it goes on to say, "Long COVID is considered anecdotal and has not been the subject of rigorous controlled studies."

WorkSafe concludes that the most plausible explanation for Aubé's ongoing symptoms is "a major depressive episode."

To Aubé it seems clear that WorkSafeNB does not recognize long COVID.

"Going back to work scares me because WorkSafe has told my employer that, 'No, she doesn't have post-COVID-19, she has depression.' Oh, my God, I don't know how I'm going to be able to face that."

When asked whether WorkSafeNB recognizes long COVID, spokesperson Laragh Dooley did not answer the question directly.

"We do not classify long-COVID claims separately from COVID-19 claims," she said in an email statement. "We do accept COVID claims, when it is proven they arose out of the course of employment."

Dooley went on to say that between March 2020 and January 2022, Worksafe approved 83 cases of COVID-19 for compensation. She did not specify how many claims, like Aubé's, were turned down.

New model needed as COVID cases rise

Lloyd hopes the research that's being done will lead to a new model of treatment for patients who are suffering with long COVID.

Based on the results of her survey, she believes the answer is "blindingly simple." Patients want an integrated health-care approach.

"It means that you have one person in charge of you. So they're actually integrating the reports of all of the specialists. And in many cases, the specialists are not necessarily seeing the patients, but they're seeing the patient files, they're seeing the test results. So they're providing their expertise."

I've been a loyal worker for many years … and going to work is a place where I feel really good. But now I don't feel supported at all.- Sonia Aubé

Lloyd doesn't believe the province, which already has a shortage of health-care workers, has any choice but to change its approach and provide faster care to help get people like Aubé back to work.

"It's going to have to happen simply because there have been now so many COVID cases," Lloyd said.

"The provinces are going to have to come up with a way to deal with this, or we just have more and more people debilitated, unable to work, and we're already in a significant labour shortage."

Aubé said she has good days and bad. She is devastated that she is unable to do the job she loves, and is trying to remain optimistic that she will get better.

"I felt so abandoned," she said. "I've been a loyal worker for many years … and going to work is a place where I feel really good. But now I don't feel supported at all."