Two friends of mine shared with me recently that they’d caught COVID — they said that they were no longer ashamed of hiding it. Then a handful more people I know opened up on social media and in professional settings. 

Within the span of about two months, I knew 12 people from across the country who caught COVID in the past year and had recovered — well, sort of. 

With the exception of one person, the rest are not in healthcare or frontline work. They were all living normal lives, some with kids and some without, some in their 30s and some in their 40s, and some living in dense urban areas and some not. Then COVID hit. And life hasn’t been the same since — for them and their families. 

They were responsible about wearing masks and distancing. They didn’t host large parties. Most caught it at a time when they hadn’t had their first vaccine dose, some after a single dose and one after being double vaxxed. Two catch up calls with friends turned into me reaching out to eight of the 12 people to listen to what life has been like for those who caught COVID and survived — but living with lingering and cascading effects — perhaps for the rest of their lives. 

These were the most difficult conversations I’ve had in a very long time. 

As of today, Canada has experienced about 1.69 million coronavirus cases, 28,749 deaths, and 1.64 million people have “recovered.” The people who have recovered tend to go by names like: survivors of COVID, COVID long-haulers, people with long-COVID and so on. There is no accurate data to know how many have fully recovered with no health or social effects whatsoever versus those who are still living with post-COVID conditions — be they physical health-related, mental health-related, or otherwise. While the eight people I spoke with are by no means a representative sample, they mentioned that most people who contracted COVID haven’t had their health, wellbeing, work and family life back to normal. That leads me to believe that the data on people recovered or even the term ‘recovered’ that we all see everywhere is complex and misleading. 

The common thread across all my calls? The dearth of social services and support programs for survivors of COVID. 

Some people I spoke to said that they’d found a rehab webinar, some said that they’d found a support group, and a few said they’d found nothing helpful. They all said that the current social services and supports are grossly lacking, with some expressing that they can’t believe community organizations and governments have let people down. 

I heard that family doctors aren’t equipped with the knowledge or skills to support a COVID survivor. Navigating job loss and finances are a grind. Dealing with the emotions and stigma is hard. Figuring out government income or disability supports isn’t easy. There’s a lack of mental health, counselling and stress supports tailored for caretakers and families. Psychotherapists, physiotherapists and other related professionals aren’t equipped with the tools to support recovery. There isn’t enough childcare and eldercare supports for survivors’ families. And a whole lot more. These are the things survivors are navigating on their own, every day.

Canada’s social sector was not prepared. More than 18 months into the pandemic, the dearth of social supports and services is shocking to me. One and a half million survivors and counting are in urgent need of recognition, therapies, and social services but our current social safety nets are allowing them to fall through the cracks. 

Just earlier this month, the World Health Organization (WHO) issued a definition for “long COVID,” the term most commonly used to describe the persistent problems that affect survivors of COVID-19. The WHO defines long COVID as a condition with at least one symptom that usually begins within three months from the onset of confirmed or probable infection with the virus, persists for at least two months, and cannot be explained by another diagnosis. Symptoms may start during the infection or appear for the first time after the patient has recovered from illness. This definition looks at effects on the body such as pulmonary, nervous and cardiovascular systems, as well as psychological effects. Exact numbers on long COVID continue to be difficult to track due to inaccurate reporting and the stigma associated with having it. According to Health Canada, post-COVID conditions are a wide range of new, returning, or ongoing physical and psychological problems people can experience four or more weeks after first being infected with the virus. Even people who did not have COVID-19 symptoms in the days or weeks after they were infected can have post-COVID conditions, they say. These conditions can present as different types and combinations of physical and psychological problems for different lengths of time. 

From all the conversations I had, the physical post-COVID conditions I heard included tiredness, sleep problems, heart palpitations, brain fog, ongoing shortness of breath, and joint pains. The mental health effects I heard included PTSD, isolation and loneliness, shame, stigma, financial anxiety, and feelings of distress and worthlessness. And then I heard about the stress effects on co-survivors, or people who have and are caring for COVID survivors. Add to this the stresses on families and familial relationships — including how survivorship affects children, elderly, financial burdens, affordability, and job transitions. Some I heard may have to go on long-term disability. 

Dr. Bram Rochwerg, site lead for the intensive care unit at Juravinski Hospital in Hamilton, Ontario said in a recent CBC article that there are rarely conversations about whether, “as patients were getting stable for discharge, whether…supports were in place for them. Those supports could include occupational therapy, physical therapy, mental health counselors and others.” 

Medical journals like The Lancet have begun to publish research that looks at the 1-year outcomes of survivors as part of a multi-year longitudinal study. In the article, the researchers emphasize that “the full range of long-term consequences of COVID-19 in patients is largely unclear. A basic knowledge gap that urgently needs to be addressed is the pathophysiology of sequelae after COVID-19 is crucial for development of treatment and prevention of poor outcomes after acute SARS-CoV-2 infection.” There needs to be more research in order to better understand the health, mental, economic and social effects of long COVID. On June 30th, 2020, Long COVID Canada, one of two post-COVID care centres (PCCC), submitted a letter penned by a cohort of Canadians who were struck by the virus, to elected officials and public health leaders to raise awareness and warning of long COVID symptoms going unchecked and unacknowledged within the Canadian population. That was on June 30th of last year. Today, over a year later, according to their website, most of those who penned the letter are still sick, and they still have no acknowledgement, resources or support.

So, what now?

What’s urgently required is a comprehensive suite of programs, services, and even institutions within our social safety nets tailored to support survivors of COVID. Although it wasn’t mentioned in any of the 10 Community Foundations’ Vital Signs reports I read this year, surviving COVID is already having health, social and economic effects in communities — from co-survivor stress to employment adaptation to mental health. Social sector inaction will surely exacerbate the situation, and as one survivor told me, “lead to inter-generational trauma and suffering.”

Canada’s social sector does have a lot of places to learn from. Think about the suite of supports for veterans or the HIV programs and services or supports for cancer survivors. A quick Google search for ‘cancer survivor’ has close to 200 million results with the very first one being a resource on: ‘what is survivorship?’ There’s even a Wikipedia article on ‘cancer survivor’ but no such thing for COVID yet. Then there are support groups, walks, runs, rallies, research centres, advocacy groups, regional, national and international days, survivor networks, social services, and more. It’s incredible to see the breadth, depth and sophistication of the suite of organizations, networks, and services. These didn’t come about overnight, whether it’s in the case of veterans or cancer, it took decades of advocacy, funding and leadership by everyone from community organizations to elected officials to survivors themselves. This can be done again — and must be done again. But we don’t have decades. 

If we want to see our communities rebuild in a way that sees everybody flourishing, supporting COVID survivors, co-survivors and survivor families has to be on the to-do list. We can’t pretend we didn’t see the effects coming. With new variants of concern emerging and current rates of spread, no one has clarity on what the case count will look like in six months. What I do know is that listening to just eight of 1.64 million people who survived COVID was more than enough to convince me that this is an imperative and the social sector must act now.

Vinod Rajasekaran

Publisher & CEO

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