‘I’m scared’: Coronavirus long-haulers claim they’ve been left to fend for themselves

In September 2020, Susie Goulding told Global News she was still suffering from severe neurological and gastronomic issues related to the novel coronavirus six months after she was diagnosed with the virus.

Nearly one year after becoming infected, Goulding said her condition remains unchanged — but the quality of her life in Toronto could collapse at any moment.

“I’m not getting better, I’m finished my employment sickness benefits, and I don’t qualify for the CERB,” she said.

Goulding said she is “scared” for what the future holds if she doesn’t receive support soon.

“I’m the shell of a person I used to be,” she said.

“I’m a single mom, my brain’s not working the way it used to, and we’re not getting any help. It’s taking a toll on me. I want to get back to work, but I just don’t have the capacity to be able to even stand up for a long period of time.”

The Canadian government has not formally distinguished long-haulers from “recovered” patients, or come up with a concrete plan to help ease the struggles faced by those still suffering with chronic health impediments almost a year after testing positive for the virus.

In an emailed statement to Global News, Health Canada said there is “currently not enough data available to definitively determine how common long-term effects of COVID-19 are, the spectrum of complications that may occur, or who is most at risk of developing complications.”

“It has been observed that most people who develop symptoms of COVID-19 are feeling better within two weeks, with severe cases taking several weeks to recover from acute illness,” the statement read.

8:48 Coronavirus: Inside Canada’s first post-COVID clinic

The Public Health Agency of Canada said it will continue to monitor the “evolving” effects of COVID-19, and encouraged researchers and health-care providers to “closely monitor recovered cases of COVID-19 to help identify and manage long-term effects.”

In Ontario, where Goulding lives, the provincial government said it does not track long-hauler cases and did not answer questions regarding a specific plan for long-haulers.

While Goulding and many long-haulers like her are calling for an action plan from the Canadian government, Christopher Carlsten, head of respiratory medicine at the University of British Columbia’s School of Population and Public Health, said it’s not that simple.

Get weekly health news

Receive the latest medical news and health information delivered to you every Sunday.

Sign up for weekly health newsletter Sign Up

By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy.

“For the government to have some formal recognition, we need to really know what what this is. And we still don’t know,” he said.

“People are frustrated and I understand and respect that. But it’s still too early to really define this or decide what level of long-term government program specifically for this is appropriate.”

He added that efforts to understand the long-term effects of COVID-19 have come a long way, stressing that listening to long-hauler patients, taking them seriously, empathizing and providing good care overall is a “huge, huge part of the solution.”

St. Paul’s Hospital in Vancouver is the first — and one of the only — post-COVID-19 clinic of its kind in the country, and is working to understand the long-term effects of COVID-19.

British Columbia’s Health Ministry did not answer questions about provincial plans to care for long-haulers. It is not known whether the province is tracking cases.

The Canadian Institutes of Health Research is funding prospective studies on the long-term effects of the virus, including the Canadian COVID-19 Prospective Cohort Study (CANCOV), which will evaluate the effects found in 2,000 COVID-19 patients within their first year of testing positive for the virus, as well as their family caregivers. The study will be conducted in Quebec, Ontario, Alberta and British Columbia.

The Global Research Collaboration for Infectious Disease Preparedness (GloPID-R) also held a virtual Long COVID Joint Research Forum last month, aimed at better understanding the long-term effects of COVID-19 and filling the gaps in knowledge for researchers and research funding agencies.

However, Goulding said not enough is being done, and that research is not moving fast enough.

Seeking answers, she has created COVID Long Haulers Support Group Canada, a Facebook group for other ‘long-haulers’ like herself, who experience chronic health problems well after the expected recovery time of 14 days.

“Being feeling ignored by the government that is supposed to be protecting us and offering us universal health care, it really makes you wonder how universal things are,” she said.

“What is going to happen to all these people that are suffering that this time?”

Jan Willis, 66, echoed Goulding’s statements.

Willis, who lives alone, told Global News she likely contracted the virus on her way home to Vancouver from a five-month trip in Ecuador and Peru that stopped in Puerto Vallarta, Mexico, on March 11. There, Willis said she came into contact with a group of people who had become infected on a cruise ship.

Since her doctor presumptively diagnosed her with COVID-19 on March 14, Willis said the virus has changed her life completely.

“I have this awful feeling it’s going to kill me at some point,” she said of the virus.

“I’m scared I’m going to die without knowing why. I spend every day trying to deal with that with grace and dignity. But I am scared. I have had a few times in the last few weeks where I feel like this is it and my government’s not doing anything.”

In the 10 months since her diagnosis, Willis said she still experiences regular confusion, blurred vision, coughing fits, severe body pains, extreme diarrhea and headaches.

“It’s like nothing I’ve ever experienced before in my entire life. It’s really scary.”

2:00 COVID-19 Long Haulers dealing with long-term effects of the virus

When Willis contracted the virus, Canada had yet to develop widespread COVID-19 testing. When she first returned to Canada, Willis explained that she felt confused and isolated from everyone she knew, and felt immense guilt from having taken two plane trips and being unable to get tested right away.

“I had been abroad, so I didn’t have the information that everyone else had,” she said. “It was like I was popped onto a different planet and suddenly had it and nobody wanted to be around me. It felt like I had cooties.”

At first, Willis said “it was like an Advent calendar. Every day was a new symptom.”

At three weeks, she said she started experiencing hallucinations.

“I hallucinated that there was this cloud in the dining room above me to the right, and it came into my head and it created this absolutely profound depression,” Willis said.

Feeling isolated and alone, Willis said she became suicidal.

“I was Googling online to find ways to kill myself. I found a crisis line and I ended up being escorted down to the hospital and spending the night there. My doctor put me on antidepressants, and I’ve been fine in that regard since,” she said.

Prior to becoming infected, Willis described herself as a “very healthy person.”

“I hiked Mount Everest a couple of years ago. I’m strong and healthy, but I am very concerned right now about myself. And my doctor can’t do anything for me. Nobody can,” she said.

If you or someone you know is in crisis and needs help, resources are available. In case of an emergency, please call 911 for immediate help.

For a directory of support services in your area, visit the Canadian Association for Suicide Prevention.

Learn more about how to help someone in crisis here.