Why this woman is fighting to get more help for people with long COVID

Susie Goulding considered herself to be the "queen of multi-tasking" before March 2020. 

"I was always on the go, had energy to spare and would always get everything done without any qualms … I was living my life," she said.  

"After COVID, I'm a completely different person. This whole experience has been a big trauma dealing with the loss of my life as I knew it."

Like many people who fell ill early in the pandemic, she never tested positive for COVID-19 and has never been officially diagnosed with long COVID.

But more than two years after she got what she believes was COVID-19, the florist and single mom still deals with neurological, gastrointestinal and cardiac issues associated with what many call long COVID or post-COVID-19 condition, according to the World Health Organization (WHO). Goulding had to quit her job as a florist and now works at another job that is less taxing for her health.

The 54-year-old who lives in Cambridge, Ont. says she's not alone in dealing with these symptoms. She's found others with similar symptoms after creating the COVID Long-Haulers Support Group Canada, a Facebook group with more than 17,000 members.

The exact number of people with long COVID in Canada is unclear. A Statistics Canada report released this week found that nearly 15 per cent of people who've contracted COVID-19 say they experienced lingering symptoms such as fatigue, shortness of breath or brain fog three months or more after their initial infection. 

Knowing how many people have been dealing with long COVID is key to better addressing the needs of those with long-term symptoms, Goulding said. That's why she's hoping governments will listen.

Here is part of her conversation with Dr. Brian Goldman, host of CBC's White Coat, Black Art.  

When did you decide to start taking matters into your own hand, in part by establishing the long COVID support group? 

You know, it all happened very organically. It happened in June 2020 after I had spoken with my doctor and she asked how my PCR test was. And I said it was negative. And she said "There you go; you never had COVID. Must be something else." 

And I thought at that point, I think I need to speak with other people who are dealing with the same issues, who are dealing with symptoms, lingering symptoms, like I can't be the only one. 

So that's how the group started. 

So we started advocating and the media, you know, put a spotlight to long COVID first and gave us a platform to be able to speak, to say you need to take heed and follow all of the mandates, wear masks, social distance. 

And then it became, you know, advocating for our rights because people were getting gaslit from medical practitioners. 

There was like a huge disconnect with all the politicians. They just wanted to sweep it under the carpet like it would go away. It was as if they thought that there just weren't enough people. This is what I was told. There just weren't enough people for it to be a big deal.

Well, now there are. 

You've been speaking up. You have testified to anyone who will listen from the Parliamentary health care committee, to insurance groups. What's that been like for you, speaking out on behalf of members who have long COVID and their loved ones?

She had COVID-19 symptoms in March, but she never got better

4 years ago

Duration 1:00

Susie Goulding says she feels like she’s living with a 'broken brain.' She started experiencing symptoms of COVID-19 in March 2020 and has paid hundreds of dollars for private medical treatment because, she says, she hasn’t been able to access the care she needs in the public system.

I feel fortunate to be able to have a voice in these places. It's really crucial work that needs to be done, you know? I just feel like if these people really knew, the government knew how terribly these people were suffering, they surely wouldn't leave them out to dry on their own.

There has to be some support. It has to be coming soon. 

I have faith in our government that they will in turn acknowledge this atrocity that's happening. 

What action do you want the government to provide?

We want the government to recognize that this is a national crisis, and that this is a mass disabling event that is affecting hundreds and thousands, if not millions, of Canadians.

And that they need to take care.

There needs to be comprehensive national strategy research funding into long COVID and a network of clinics set up that are dedicated to treat people with this disease. There needs to be a national registry that just shares information. 

People aren't counted in Canada. How are we supposed to treat this event without even knowing what we're dealing with, when we haven't even really counted the number of people that this is affecting? So that would be a good start. 

Produced by Sujata Berry. Q&A edited for length and clarity.