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in si de ha lto n. co m O ak vi lle B ea ve r | T hu rs da y, Ju ne 9, 20 22 | 30 NOW OPEN Time stands still for CO- VID long haulers. The infection may be long gone, but so is the life they once knew as they continue to battle linger- ing, often debilitating symptoms and the stigma of belonging to a growing phenomenon of disabled COVID survivors. Chronic health issues mean some COVID long haulers are unable to work. Disability benefits are of- ten denied and treatment, if accessible, is not always covered by OHIP. Friends can disappear, afraid of what they don't under- stand. A Facebook support group for COVID long haul- ers created by Oakville's Susie Goulding now has 17,000 members. A month after it was launched in June of 2020, there were just over 900. Group members post from across Canada, swap stories of prolonged health problems and helpful treat- ments. These are the people Goulding will advocate for when she speaks before a federal health committee, "hopefully" before parlia- ment's summer recess. "The ones that are inca- pacitated, completely bed- ridden and the people who are actually getting worse over two years, those are very severe and tragic cases. What's tragic to me also is the stigma that's at- tached to having long CO- VID and the way that peo- ple are getting treated in their workplace," said Goulding. These are people trying to manage their symptoms and get on with their lives but are being stigmatized in many different ways by family, friends, co-workers or by their bosses, said Goulding. "People are getting laid off from work, people are getting fired from their jobs." There needs to be more compassion for people suf- fering from long COVID, she said. "It's because of a lack of knowledge. They don't know what long COVID is and they don't understand the symptoms and the epi- sodic nature of having long COVID. It's hard to deal with someone when they are not pulling their weight at work or in the house." When familial responsi- bilities need to be shifted, it may not seem fair when one person is "seemingly resting." Goulding is one of the most familiar COVID long hauler faces in the country. She has given the group a voice and continues to bring attention to the plight of this often-forgotten com- munity through the media, her participation in re- search studies and advoca- cy for more funding and treatment options. Goulding contracted COVID at the onset of the pandemic, yet is still plagued with gastro and cardio problems as well as life-changing cognitive is- sues. "Mostly searching for words and memory issues." A three-month rehabili- tation program at Burling- ton's Pillars of Wellness re- lieved symptoms like mood balance, tinnitus, balance, and insomnia; some of those issues have since even resolved, she said. She is a patient partner in many studies, speaks at webinars and will soon be a patient researcher through the University of Calgary. Goulding is working again, this time as a medic in the film industry being forced to give up the phys- ical demands of floral de- sign. "I'm 80 per cent recov- ered on a good day." "You gotta live for today and live with it. I consider myself lucky in compari- son with what other people are dealing with. At least I can walk, and I can breathe. I can take care of myself. I certainly don't live the same pace of life as I used to." There's a lot of work still to be done in terms of awareness, research and funding, said Goulding. "There has been a bit of recognition, so we're mov- ing in the right direction. We're happy when one (treatment) clinic opens but there needs to be 100. What it basically comes down to is, what does this situation need and how much money are we going to have to put into it?" There are even fewer treatment options available for children with long CO- VID, said Goulding, who through her Facebook group is trying to organize a meeting with parents to determine what supports they require, so she can al- so present their needs to the committee. "I have to do what I can. So many people are suffer- ing so badly that I honestly feel like one of the lucky ones." MORE COMPASSION NEEDED, SAYS COVID LONG HAULER COVID Long Haulers Support Group Canada, launched almost two years ago by Oakville's Susie Goulding, has reached 17,000 members. Susie Goulding photo KATHY YANCHUS kyanchus@metroland.com NEWS LOCAL WOMAN FEELS LACK OF UNDERSTANDING HURTING SUFFERERS "What's tragic to me also is the stigma that's attached to having Long COVID and the way that people are getting treated in their workplace." - Susie Goulding