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

Susie Goulding considered herself the « queen of multitasking » before March 2020.

« I was always on the move, I had energy to spare and I always did everything without any qualms… I was living my life, » she said.

« After COVID, I’m a completely different person. This whole experience was a big trauma of losing my life as I knew it. »

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

But more than two years after getting what she believes to be COVID-19, the florist and single mother is still struggling with neurological, gastrointestinal and heart issues associated with what many are calling the long COVID or post-COVID-19 status, according to the World Health Organization (WHO). Goulding had to quit her job as a florist and now has another job that is less stressful on her health.

The 54-year-old man who lives in Cambridge, Ontario. says she’s not the only one dealing with these symptoms. She 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% of people who contracted COVID-19 say they experienced persistent 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 meeting the needs of those with long-term symptoms, Goulding said. That’s why she hopes governments will listen.

Here is part of his conversation with Dr. Brian Goldman, host of the CBC show White Coat, Black Art.

When did you decide to start taking matters into your own hands, in part by creating the long-running COVID support group?

You know, everything happened very organically. It happened in June 2020 after talking with my doctor and she asked me how my PCR test was. And I said it was negative. And she said, « Here, you’ve never had COVID. It must be something else. »

And I thought at that point, I think I need to talk to other people who have the same issues, who have symptoms, persistent symptoms, like I can’t be the only one.

This is how the band started.

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

And then it became, you know, advocacy because people were getting enlightened by doctors.

There was like a huge disconnect with all the politicians. They just wanted to sweep it under the rug like it was going to go away. It was like they thought there just weren’t enough people. That’s what I was told. There just weren’t enough people for it to be a big deal.

Well, now there is.

You spoke. You have testified before everyone who will hear from the parliamentary committee on health care, insurance groups. How has it been for you, speaking on behalf of members who have long had COVID and their loved ones?

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

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

I feel lucky 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, surely they wouldn’t let them dry themselves out.

There must be some support. It must arrive soon.

I have confidence in our government that it will in turn recognize this atrocity that is 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 affecting hundreds and thousands, if not millions, of Canadians.

And they have to be careful.

There must be comprehensive funding for national long-COVID strategic research and a network of clinics established that are dedicated to treating people with this disease. There needs to be a national registry that simply shares information.

People are not counted in Canada. How are we supposed to deal with this event without even knowing what we’re dealing with, when we haven’t even really counted the number of people it affects? So that would be a good start.

Written and directed by Stéphanie Dubois. Questions and answers edited for length and clarity.