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

Sonia Aub, 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, theteam, also known as aPROMT, isdeployed to long-term care homes and other vulnerable settings when aCOVID-19 outbreak happens.

Aub, 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."

Aubhadn't yet received her first shot, when she responded to theoutbreak 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 torequire hospitalization.

"I was followed by Public Health for the whole two weeks," Aub 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 employerand 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 COVIDunknown

At the time, Aub 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. Aub 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 Aub's daughter to come and get her.

Her family doctor wasn't available to see her, so Aubwent to the emergency room. The doctor there suggested shecould havepost-COVID symptoms. That was the first time she had heard oflong 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 experiencewith long-termeffects of the virus.

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

Lloyd said the other themes that run through the responses arethe "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 notthat helpful and in many ways, antagonistic."

Lloyd saidthe 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 Newsasked 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 continuingresearch will "address many outstanding questions" and that the health authoritieshave "enrolled patients into a collaborative registry study to better understand the impacts of COVID-19 on New Brunswick patients."

Aub is participating in two studiesbut saidanswering a survey and taking part in interviews with researchers aren'thelping 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 thatothers don't believe your symptoms is lonely, Aub 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 yearcame when WorkSafeNBturned down Aub's claim for long-term compensation. She received about three months of compensation.

A letter from WorkSafeNB dated Nov. 29, 2021,which outlinesAube's case, states, "It is quite certain that Ms. Aub acquired COVID19 in heroccupational setting."

However it goes on to say, "LongCOVIDis considered anecdotal and has not been the subjectof rigorous controlled studies."

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

To Aubit seems clear that WorkSafeNBdoes 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 inan 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 Aub's, wereturned 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 Aub

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 peoplelike Aub 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."

Aub said she has good days and bad. Sheis 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."