COVID-19 long-hauler now on long-term disability warns others about the 'invisible disease'

Leanne Argoso of London, Ont., assumed she would bounce back after getting COVID-19 in March 2022. She didn't.

Argoso, 45, is now on long-term disability from her job as a physiotherapist at Parkwood Institute with St. Joseph's Health Care and struggles with fatigue.

She's warning others that long COVID-19 is real.

"I'm quite an active person and after having COVID, I treated it like any other cold. I went back full throttle into my exercising, work and everything, and I just didn't have the same energy."

I look like I'm functioning fine. You kind of start to wonder if you're crazy a bit.- Leanne Argoso, COVID-19 long-hauler

By October, Argoso was on short-term disability. After a brief return to work, she's now on long-term disability.

"I wake up and my legs just feel heavy," she said. "When I overdo it, my body gets jittery. It's almost like I'm vibrating and pulsing."

She has trouble concentrating, gets frequent headaches and often has difficulty remembering words. These are typical long-haul symptoms, which can also include having trouble sleeping, shortness of breath, general pain and discomfort and mental-health struggles, according to the federal government's website on long COVID-19.

"It has changed my life significantly," said Argoso, who is now a patient with St. Joseph's Post-Acute COVID-19 Program.

Unknowns create epidemiological 'disaster' 

Kelsi Break, a spokesperson for St. Joseph's Healthcare, said that since the program started in January 2021, they've served 510 patients who've made more than 3,300 visits.

The future of the program, however, remains unclear.

"We have not yet received confirmation of permanent funding," she said.

In an email to CBC London, Break said funding for the program that was provided by Ontario Health ended on March 31, 2022.

"St. Joseph's has continued to operate the program without a confirmed funding source, to maintain continuity of care for our patients while we continue discussions with Ontario Health regarding ongoing funding for the program," she wrote.

There's no definitive diagnostic test. Everyone's got a different clinical definition. From an epidemiological standpoint, that's a disaster.- Colin Furness, epidemiologist

Argoso said most people would never know she's a COVID-19 long-hauler.

"Unless you're really affected — the people who can't get out of bed, who have had to get mobility aids — you can't tell when I'm out and about," she said Argoso. "It's an invisible disease. I look like I'm functioning fine."

Tests on Argoso's heart and lungs look good. It's been hard to pinpoint why she feels the way she does.

Leanne Argoso documents her long COVID journey on Instagram:

"Everything's normal," said Argoso. "You kind of start to wonder if you're crazy a bit."

There's still much that isn't known about long COVID-19, such as what the risk factors are, said Colin Furness, an infection control epidemiologist and University of Toronto assistant professor. 

"There's no definitive diagnostic test," he said. "Everyone's got a different clinical definition, and from an epidemiological standpoint, that's a disaster.

"We don't really know why COVID is able to penetrate the body so thoroughly and cause so much damage for some people, but not others," he said. 

Argoso is urging people to not let their guard down.

"People think the pandemic is over and I get it's not as extreme, but COVID is still out there. Be cautious and aware that it's still out there and it could affect you — you don't know."