'I have lost who I was': Winnipegger struggling with long-COVID says more support is needed

A Winnipegger struggling with long-COVID says more understanding and support for the condition is needed.

L. J. Custance, a home-care nurse, caught COVID-19 in August and has not returned to work due to lingering physical and mental symptoms. She says her sense of smell and taste still have not returned.

She now works on worksheets given to her by her occupational therapist, which she says are helping to retrain her brain.

"Talking out loud is something they say to do for your memory too," she said.

Custance hopes this helps improve her long-COVID symptoms, including fatigue and brain fog, which she said makes every day a struggle.

"My husband and I went to pay a bill the other day and I had to write a cheque and after making three mistakes and I started putting letters instead of numbers, he was just like, 'Did you want me to just do this for you?'"

The licensed practical nurse said it has been close to eight months since she worked doing home care.

"I think the government needs to start acknowledging this and get help out for people," she said.

On Tuesday, a provincial long-COVID working group was announced. A Shared Health spokesperson told CTV News in part, "The group is developing a webpage with information for patients as well as guidance and recommendations for health-care providers treating this condition and its symptoms."

Dr. Brent Roussin, the chief provincial public health officer, said right now there isn't a jurisdiction that has long-COVID as a reportable illness.

"It would be very difficult, as this is very tough to come up with a clear case definition of," he said.

Custance said she is working to accept her life may never be the same.

"I used to consider myself fairly smart, fairly sharp and I feel stupid and it's really frustrating," she said. "It's like a grieving process—I have lost who I was and I don't know if I am ever going to get that back."

Still, she's hopeful recovery and a safe return to work is possible. However, she said the biggest hurdle standing in the way is having her experience validated.

"We didn't shut down the world for two years to then pretend that COVID is nothing and that its long-lasting effects don't exist," she said.

Custance said she did have a meeting today to start easing back into work, though she will likely be working in a different area and will be partnered with another nurse to start.

Shared Health said the group is also developing tools highlighting when, where and how to seek support from a health-care provider with a focus on addressing gaps in accessing community-based care.