The COVID Long Haulers Support Group Canada, started nearly two years ago by Oakville resident Susie Goulding, has reached 17,000 members.

Time has stood still for COVID long-distance drivers.

The infection may be long gone, but so is the life they once knew as they continue to battle lingering, often debilitating symptoms and the stigma of belonging to a growing phenomenon of disabled COVID survivors.

Chronic health issues mean some long-distance COVID drivers are unable to work. Disability benefits are often denied and treatment, where possible, is not always covered by OHIP. Friends can disappear for fear of what they don’t understand.

A Facebook support group for long-distance COVID drivers started by Oakville resident Susie Goulding now has 17,000 members. A month after launch in June 2020, it was just over 900.

Group members post from across Canada, sharing stories of ongoing health issues and helpful treatments. Goulding will champion those people when she “hopefully” addresses a federal health committee before the House summer recess.

“Those who are unable to work, who are completely bedridden and those who are actually worse off for over two years, these are very serious and tragic cases. What’s also tragic for me is the stigma attached to a long COVID and the way people are treated in their workplace,” Goulding said.

These are people who are trying to manage their symptoms and get on with their lives, but are stigmatized in many different ways by family, friends, co-workers or their bosses, Goulding said.

“People are being fired from their jobs, people are being fired from their jobs.”

There needs to be more compassion for people suffering from long COVID, she said.

“It’s a lack of knowledge. They don’t know how long COVID is and they don’t understand the symptoms and episodic nature of a long COVID. It’s hard to deal with someone when they’re not doing their part at work or around the house.”

When family responsibilities need to be shifted, it may not seem fair for a person to “seem to be dormant.”

Goulding is one of the country’s most recognizable long-distance COVID faces. She has provided a voice for the group and continues to raise awareness of the plight of this often-forgotten community through the media, her participation in research studies, and advocacy for more funding and treatment options.

Goulding contracted COVID early in the pandemic but is still plagued by gastrointestinal issues and life-changing cognitive problems.

“Mostly word searching and memory problems.”

A three-month rehabilitation program at Burlington’s Pillars of Wellness alleviated symptoms such as mood balance, tinnitus, imbalance and insomnia; In fact, some of those problems have since been resolved, she said.

She is a patient partner in many studies, speaks at webinars and will soon be a patient researcher at the University of Calgary.

Goulding works again, this time as a medic in the film industry, forced to give up the physical demands of floral design.

“On a good day, I’m 80 percent recovered.”

“You have to live for today and live with it. I consider myself lucky compared to what other people deal with. At least I can walk and breathe. I can look after myself. I’m certainly not living at the same pace as I used to.”

There is still work to be done in terms of awareness, research and funding, Goulding said.

“There was a bit of recognition, so we’re moving in the right direction. We are happy when a (treatment) clinic is opened, but it has to be 100. Basically, it’s about what does this situation need and how much money do we have to spend on it?”

There are even fewer treatment options available for children with long COVID, said Goulding, who through her Facebook group is trying to set up a meeting with parents to determine what support they need so she can bring their needs to the committee, too.

“I have to do what I can. So many people are suffering so much that I honestly feel like one of the lucky ones.”

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