Long COVID Canada is Canada's first national long COVID advocacy group
By Spencer van Vloten
September 28th, 2021
A few months after catching COVID, Jonah McGarva thought the worst had passed, only for his symptoms to remerge with devastating effect. Determined to help others in his situation, Jonah's beome a leader of Long COVID Canada, the first national advocacy organization for the cause.
We spoke with Jonah about why long COVID could be a looming crisis, and what he thinks must be done to address it.
Tell me your experience with COVID
Jonah: COVID's fascinating. The science behind it and the vaccines, the impacts of it, and the process of setting policy and directives.
You have so many different voices across the country, personal backgrounds, and motives, which makes it hard to come to agreement, and that's partly why the responses take longer than they should.
As for my story, I got COVID in early 2020 and was very sick, but I made the conscious decision not to go to the hospital, because I didn’t want to take up a bed that someone else needed more.
It was very tough and some days I thought I wouldn’t make it. I started getting better around June and tried going back to work and restarting my workout routine, but I hit a brick wall. I had no energy and couldn’t get out of bed.
Jonah McGarva's experience with long COVID has left him physically, financially, and mentally drained
It's taken 18 months and 3 different attempts to get into a post-COVID recovery clinic. There’s no urgency to treat long COVID patients and too many doctors rely on flawed PCR tests to determine whether someone has COVID.
I'm amazed that it took Canada so long to get funding and research into this. There's been a lot of downplaying of it.
You said the issue's being downplayed - how so?
Jonah: For one, the recovered statistic is a misnomer – it makes it appear as if people in those numbers aren’t sick when they are.
This number includes people with long COVID, but people with long COVID are not recovered. People will ignore that so it doesn't appear as bad as it really is.
For another, there's a lot of ignorance or refusal to acknowledge the seriousness of the symptoms that persist with long COVID, and the impact those have on people's lives.
What impacts are those?
Jonah: It's been devastating on many of us.
People can't return to work, so they're forced to sell their homes, their cars. They're forced to eat through savings, and a lot of relationships have crumbled under the stress of it.
My own experience has been mentally very challenging. I had my dream job in entertainment taken away because I got sick and financially it's been terrible.
Since January of this year I've had no income and it's been increasingly difficult to afford medications and therapies. The financial burden weighs on people and makes them desperate, leading to the rise of questionable treatments.
The financial burden weighs on people and makes them desperate, leading to the rise of questionable treatments
My brain doesn’t function properly on most days, it's hard to get out of bed and shower, and it's now hard to do something as simple as reading an email. I was a social, busy person and now can't do most of the things I enjoyed.
People with long COVID aren't being recognized or getting the support they need, and are being treated as burdens on the system. It wears down your sense of worth.
We just want to go back to work, we just want our lives back.
When did you decide to advocate for people experiencing long COVID?
Jonah: The struggle with long COVID wasn’t a conversation that was happening in Canada. Most of the groups were in the USA, and a lot of the discussion was just in small fragments here and there.
I met Scott Ferrari, the founder of Long COVID Canada, and we immediately struck up a friendship, because we saw a big need for Canadians to kick and scream about the issue.
And you know, I've lost friends and allies over issues related to COVID – such as for saying there's no evidence that Ivermectin works. It's become such a charged topic.
What policy changes should happen?
Jonah: Trudeau’s plan of $100 million to research long COVID sounds like a lot, but over 5 years that’s not so much. And it's not helping people who are sick and need help right now.
The government needs to act faster and stop merely saying they’ll look into it.
What I see that scares me is that so many people are downplaying long COVID - it’s all headline maneuvering and trying to strike a good public image. The research shows that things are much worse than a lot of people would like to admit.
Dr. Bonnie Henry, with chief public health officer of Canada, Dr. Theresa Tam. Jonah would like to see more coordination between provinces and between federal and provincial governments.
The most important thing's to coordinate with all provincial and territorial health officers so they're relaying the same information. Find a way to coordinate research as well. This is a chance to fix issues with health care across the country, and will save us from a lot of confusion and division.
I think it really does take courage to be able to step back from it all and look for a solution together, and solutions come from intelligent discourse.
What are the main things you want the public to know about long COVID?
Jonah: None of us asked to get sick or lose our livelihood.
We need more people to speak up, come forward, tell their stories, not only the physical side but also the mental and financial impact.
We also need more leaders in our community. It's been an incredible learning experience for me but I'm only one person. The more of us in this together, the quicker the response.
Coming together and sharing stories is therapeutic as well, it gives hope, strength, and determination to carry on. You can't give up on yourself, you can't give up on your own health.
You have to be a fighter and an advocate.
See more at Long COVID Canada's website
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to email@example.com!