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Young COVID-19 long-haulers: Stuck in no man's land

Last Updated Oct 29, 2020 at 6:54 am PST

Summary

Young long-haulers say their lives are now split into before COVID-19 and after

'It’s just recurring symptoms. You don’t know what each day is going to look like,' young long-hauler says

They were young and healthy — until COVID-19 arrived.

Initially the pandemic was believed to only impact the elderly, but there is a growing number of people under 40 who are still grappling with life-altering symptoms months after they believe they were infected. Six of them told CityNews their stories.

They are between 18 and 36 years old and live across the country, as well as in the United Kingdom. Their lives are now split into before COVID-19 and after.

“It’s absolutely exhausting” — Miranda, age 36.
“It’s very frustrating” — Meaghan, age 18.
“I started thinking, am I going crazy?” — Eileen, age 26.
“I think I’m going crazy” — Maggie, age 34.

‘Like I was drowning’

Alex Wilson said when he first became ill on April 3 he was gasping for breath.

“It felt like I was drowning,” he explained.

The 34-year-old carpenter from Peterborough, Ont. said he was healthier than he had ever been in his life. Six months later he is still unable to work.

“Even cooking in the kitchen for half an hour lays me out,” he said. “It’s taking a toll that’s for sure, not being able to play with my kids…they don’t understand why.”

Miranda, 36, who lives east of Toronto, is a mother of young children. She said her COVID-19 symptoms started with headaches, fatigue and dizziness.

Before the pandemic, she could run 10K. But eight months after falling ill, nothing is the same.

“In August I had a stroke-like episode,” she explained. “It’s just recurring symptoms. You don’t know what each day is going to look like.”

‘I can’t breathe’

Across the Atlantic Ocean, close to 6,000 kilometres away, 34-year-old Maggie Kubicka has the same experience of ever-changing symptoms. It has been eight months since she tested positive.

“Every day is different,” she said. “A week ago, I had a terrible brain fog, then it changed to tummy aches.”

Eileen Holowka, 26, who lives in Montreal, knows all about the brain fogs, and calls them “especially difficult.”

Brianna McGirr, 27, also a Montrealer, was told by contact tracers that it’s believed she got COVID-19 on the subway. Six months later she still can’t do anything physical.

“I walked to the grocery store … it’s about 20 minutes and I have to take a break in between to take an inhaler on the way there and on the way back,” she explained.

And then there is 18-year-old Meghan Dewar, a first-year university student in PEI.

“I’ve been a Lifeguard since 14,” she told CityNews. “And now all of a sudden I can’t, I can’t breathe.”

Of all these cases, only Kubicka tested positive for COVID-19. The other either couldn’t get tested during the early chaotic days of the pandemic or weren’t tested in time for accurate results.

Some said doctors have told them they “present” like COVID-19 patients, but others said doctors have suggested the lingering symptoms are in their heads.

That suggestion is infuriating to Holowka.

“I think it’s bonkers to not believe that someone has had COVID when we know this is a pandemic,” she said.

No one can tell them why they are still sick or if they will get better. They all have found solace in the COVID Long Haulers Support Group of Canada – it now has more than 7,500 members. Susie Goulding started the group after she became ill.

“I felt so alone and wanted to find someone else going through the same thing,” she said.

More young people join growing list of long haulers

The group used to be mainly made up of people over 40 – but Goulding said that has changed dramatically in the past few weeks.

“Young people started to trickle in until three weeks ago when had a huge surge of young people joining the group,” she said.

That fits with the data. In the weeks leading up to the second wave of COVID-19, cases of younger people started to rise, surpassing older age groups. In Ontario there have been 12 deaths among people under the age of 40.

Most of the rest of the close to 34,000 in that age group would be considered “resolved.” Wilson argues that doesn’t mean recovered.

“They’re counting it as a win, but what kind of win is it? Okay, we didn’t die but we could have long-term heath issues,” he said,  and then stopped and struggled to take a pained breath.

“It’s taking a toll on me.”

They have a warning to all who aren’t taking the pandemic seriously – the virus doesn’t only devastate the elderly.

“I learned the hard way there is no age exemption from COVID-19,” McGirr said.

But there is one bright note to this story. Months on, Dewar, McGirr, and Holowka believe they are slowly seeing improvement.

Currently there is no firm data on how many people suffer from long term symptoms but in Canada it could be thousands. A study released this month by Trinity College in Dublin found more than half of “recovered” patients experienced persistent fatigue months later, whether they were hospitalized or not.

Another recent study from the National Institute for Health Research in the U.K. concludes there is a common theme that “symptoms arise in one physiological system then abate only for symptoms to arise in a different system.”

Goulding is calling on governments to do more research and help for rehab.

“There’s no where for us to go,” she said.

“I went to a neurologist today who said there was nothing she could do and sent me to an ear nose and throat specialist who pointed to a neurologist.”