Amethyst Barron is a COVID long hauler who participated in East End Community Centre’s Long COVID-19 Support Program.
Since April 2020, Amethyst Barron has experienced fevers, migraines and exhaustion. Constant and unrelenting, the symptoms impact day-to-day life for the 36-year-old Beaches resident, so much so that it can be difficult to “get through a 20-minute walk.” Occasionally, these symptoms are exacerbated by other complications that Amethyst began experiencing around the same time last year: gastrointestinal issues, pink eye, tachycardia, severe lower back pain.
Perplexed by the onset of these symptoms, Amethyst looked online and, despite never testing positive for COVID-19, discovered they may be suffering from long COVID, a period of extended complications stemming from a COVID-19 infection. Although research about the condition is ongoing, it’s estimated that anywhere between 10 to 35 per cent of individuals who have tested positive for COVID-19 (or suspect they have had COVID-19) experience long-term symptoms.
These symptoms include headache, fatigue, “brain fog,” chest and muscle pain, persistent cough, loss of smell, depression, shortness of breath, recurrent fever and more. During this period, these individuals — often referred to as “COVID long haulers” — are not considered contagious. However, research suggests they may experience multiple symptoms at once or in waves, and that symptoms could persist for months and even years.
“It’s been very debilitating,” Amethyst said. “Both the illness itself and the lack of understanding from friends and family, as well as some medical professionals.”
It’s this reason why Amethyst joined East End Community Health Centre’s Long COVID-19 Support Group. The virtual group’s first cohort of self-identified COVID long haulers met weekly from February to April. During each session, participants received mental health support and educational resources that helped them learn about and manage their symptoms. They also received peer support which helped validate their health concerns and issues.
“Because long COVID is a relatively new phenomenon, there is little support and resources available for those who may be experiencing it,” said Marilyn Van Der Kooi, a social worker and mental health counsellor at East End Community Health Centre who led the support group. “There are a lot of unknowns. And that has a huge impact on people’s ability to live their life and on their sense of self.”
During the program, Marilyn partnered with other local agencies, such as South Riverdale Community Health Centre, Scarborough Centre for Healthy Communities and Four Villages Community Health Centre, to help ensure participants could take away “real, relevant strategies” for managing their symptoms from a team of allied health professionals. These include nurses, occupational therapists, a social worker, a kinesiologist, a respiratory therapist and a physiotherapist.
For Amethyst, the mutual support offered by the Long COVID-19 Support Group was especially valuable. They said, up until the support group’s start, they had been primarily learning about long COVID, and connecting with others who had the condition, through Facebook groups. They said they appreciated how East End Community Health Centre’s Long COVID-19 Support Group created a safe virtual space for COVID long haulers to come together and share their experiences, as well as coping strategies that have worked for them.
“It was a really positive and helpful experience, both in terms of support and information,” Amethyst said.
Since completing the eight-week program, Amethyst has had the opportunity to receive their first dose of the COVID-19 vaccine, which early research suggests may help improve long COVID symptoms. They urge others to take public health guidelines seriously, and to get the vaccine when it is available to them, so we can prevent the transmission of COVID-19.
“There are huge numbers of people who are experiencing varying levels of disability from this virus that, at this time, we’re not sure can be fully cured,” Amethyst said. “So it’s not just deaths and hospitalizations from COVID-19 we’re trying to prevent. It’s the long-term impact on individual lives, too.”
As more studies on long COVID come to light, additional supports will be needed to help those experiencing the condition. These supports include East End Community Health Centre’s Long COVID-19 Support Group, which supported its second cohort from May to June, as well as Providence Healthcare’s new outpatient and virtual rehabilitation program, which helps individuals who are experiencing long COVID symptoms regain their independence.
“I think these programs are necessary because they help participants understand what could be happening to their bodies and that recovery is different for everyone,” said Marilyn.
She added she is hopeful that East End Community Health Centre, along with other community health centres, will be able to continue providing long COVID support given its value for participants and its capacity to help providers further develop professional knowledge and responsive programs.
“These individuals may not feel the same as they used to and they may not be able to do the same things they used to,” Marilyn said of COVID long haulers. “So it’s important we give them that medical and emotional support.”
East End Community Health Centre’s Long COVID-19 Support Group is seeking participants for its third run from July 8 to September 9. Individuals who are interested in participating should email Marilyn Van Der Kooi at mvanderkooi@eastendchc.on.ca before July 7. Please note space is limited. Individuals are required to participate in a phone screening prior to July 8 to help ensure that the program will meet their needs.