It's been 4 years since COVID-19 was declared a pandemic. Here's what it's like for Canadians living with long COVID

Four years after COVID-19 was declared a global pandemic, Yahoo Canada spoke with several people still living with long COVID. Read their stories HERE.

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

March 11 marks the fourth anniversary of the World Health Organization declaring a global pandemic due to COVID-19. In that time, Canadians have been affected in all aspects of life — from shuttered businesses to disrupted education and family disagreements, among other things.

While some have settled back into their routines, the reality of long COVID-19 persists for many, reminding us the pandemic's effects are far-reaching and complex.

"For those that have long COVID, this is a very real issue that is just as important as it ever was," said Dr. Grace Lam, a respirologist, an assistant professor of pulmonary medicine at the University of Alberta and a co-director of a long COVID clinic in Edmonton, Alta.

Yahoo Canada recently spoke to Canadians suffering from long COVID as well as doctors and researchers in the field, to get a sense how the long-lasting illness continues to derail people's lives. Here's what you need to know.

How long COVID is like 'losing your life without dying'

According to Statistics Canada, one in nine Canadian adults have experienced long-term COVID-19 symptoms. These symptoms can include respiratory, cardiovascular, neurological and cognitive impairments — and they can be debilitating.

Almost half of Canadians who reported they continue to experience long-term symptoms, also reported no improvement over time. As of June 2023, more than 58 per cent of infected Canadians who ever reported long-term symptoms continue to experience them. These can be felt in waves or daily, affecting someone's routine and work, limiting their activities.

Lam said the people who are predominantly affected by long COVID differ from those who might have a severe acute COVID-19 infection. Specifically, while people who were older and immunocompromised were prioritized for vaccines and antiviral medications, the cohort of people with long COVID tend to be middle-aged, around 40-60 years old. Females are also more likely to have long COVID, Lam added.

"I think the unique thing about long COVID is that it seems to strike people who are young, in their prime working life, taking care of children and that sort of thing," Lam said. "And the broader ramifications of this chronic illness is having a huge impact, not only for the family or the patient individually, but as well as the community and society."

More than one in five Canadians with long COVID, also known as long-haul COVID or post-COVID-19 condition, reported missing days of school or work. Many have also sought social programs or disability because their illness prevents them from working.

During a virtual public roundtable in September 2022, people with long COVID described their illness as "losing your life without dying." They described their experiences which included stigma, inadequate support from the healthcare system and the loss of personal and professional identities.

How do long COVID symptoms present in people?

As different variants of concern entered Canada and the years have gone by, what first characterized COVID-19 and its symptoms, things like a cough, difficulty breathing and a loss of sense of taste or smell, have changed over time and vary between individuals.

For long COVID, many common symptoms people experience include, but are not limited to:

• Extreme fatigue

• Brain Fog

• Heart palpitations

• Breathlessness

• Post-exertional malaise

For Robert DeRosa, a 41-year-old living in Hamilton, Ont., all these symptoms and more rang true. DeRosa even experienced tooth and hair loss, as well as insomnia and PTSD (post-traumatic stress disorder). "I feel like a shadow of myself," DeRosa told Yahoo Canada. "It's been four years now. I just want my life back."

Hoi Bing Mo, a 53-year-old woman living in Coquitlam, B.C., also experiences debilitating fatigue, but what was most alarming for her when she first contracted COVID-19, were the "excruciating" headaches and severe heart palpitations. "My chest pain got so severe I thought I was experiencing a heart attack one night and ended up in the ER," she recalled.

Many Canadians with long COVID, like Mo, also experience POTS (postural tachycardia syndrome), a condition where one's heart rate spikes when they stand up from a seated or lying position.

Though the list of physical symptoms of long COVID is long and different for each individual, the mental health effects and grief around their illness are common, and just as pressing. A Facebook group called "COVID Long-Haulers Support Group Canada," has nearly 20,000 members, all trying to find advice, support and community in their illness.

"Certainly, having a chronic illness is going to make it difficult for anybody who was previously healthy and had no health issues to now having a chronic illness where it's difficult for them to even get out of bed," Lam said. "It's a challenge to have to readjust how they see themselves, or their role in society."

What does treatment for long COVID look like?

DeRosa and Mo were accepted as patients in long COVID clinics but were both disappointed by their experiences. A doctor was allegedly dismissive of DeRosa and his symptoms, while Mo's clinic moved to an online, educational model, rather than an in-person clinic.

During the 2022 virtual roundtable, people with long COVID highlighted the importance of simply acknowledging long COVID is a real condition to help overcome barriers to care.

Though no cure currently exists, and many long COVID clinics have shifted to online, some rehabilitation centres are tailored specifically to those suffering from the illness. Dr. Alexandra Rendely, a physician at the University Health Network's Toronto Rehabilitation Institute, works in a clinic like this.

She said the UHN clinic has been busy since it opened in June 2020 and referrals have not slowed down. Sessions are tailored to each patient and their goals: if they hope to return to work, find some relief in their body aches, or just try to keep their house and daily activities functioning.

"We talk a lot about pacing," Rendley said, adding the goal is for patients to learn self-management strategies for their symptoms. "We have definitely seen some great improvement. We've seen patients that have been in the ICU that have returned to work. We've seen patients that have struggled with daily activities like getting up, getting dressed and showering, who have been able to return to the activities they enjoy."

Optimism in long COVID research

Dr. Emilia Falcone, the co-leader of the biomedical team of Long COVID Web, the Pan Canadian network on long COVID, as well as the director of the IRCM post-COVID-19 research clinic in Montreal, said there has been a significant amount of progress in understanding long COVID.

She added her research team hopes to learn two important objectives. One is to identify predictive biomarkers of disease and long COVID, which would help in clinical care and for patients dealing with insurance issues or in need of workers' compensation. Her team is also researching potential treatments.

"I am hopeful. I think we have lots of brilliant individuals and different disciplines and sectors working on this pressing matter," Falcone said.

In the meantime, respirologist Lam claimed the COVID-19 vaccine is one of the best things people can do to avoid getting the virus and developing long COVID.

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