When Tanaeya Taylor caught a severe case of COVID-19 in March 2020, she never thought she would still be feeling its effects.
But after recovering at home from the initial infection and illness, she noticed symptoms that weren't going away.
"I was having just full body tremors all the time, and then I started to feel not fully alert, I still don’t feel fully alert,” says Taylor. “I was getting dizzy spells, I thought it was going to pass out all the time.”
Those were just a few of her symptoms, which also included a rapid heart rate and trouble breathing. At her worst in October of 2020, Taylor says she was so tired, she couldn’t drive.
At 23-years-old, she had to go on leave from her job and still hasn’t gone back.
Taylor says it was a struggle to even get diagnosed at the time, because her doctor kept insisting there might be other causes for her symptoms.
These days, Taylor now shares her story as a so-called "long-hauler" through her Instagram and TikTok feeds, creating a podcast for "long COVID" sufferers called, “Longer than COVID.”
“I would never wish what I went through on my worst enemy, ever,” says Taylor.
Taylor’s experience is familiar to Mount Allison University biology professor Vett Lloyd.
Soon after the pandemic began, Lloyd began a survey of patients across the country who were experiencing new symptoms after recovering from a COVID-19 infection.
She surveyed more than 700 patients about their symptoms, medical care, and quality of life, and then followed up with them in 2021.
“A year later, you still have people with severely debilitating conditions,” says Lloyd, who is continuing her study as infections continue.
Lloyd says global figures estimate between 10 to 30 per cent of COVID patients develop post-virus illness.
“So, even if we take the most conservative estimate, 10 per cent of the people who get COVID will have ongoing symptoms, and then say half of those will still be very ill a year later, we've got a substantial problem with a big chunk of the population dealing with chronic illness," she says.
In Nova Scotia, "long COVID" patients are typically sent to a specialized team at Nova Scotia Health’s Integrated Chronic Care service in Fall River, N.S., which existed before the pandemic for treatment of other chronic conditions, but now also takes on "long COVID" cases.
"Upwards of 300 have come in through our service, our post COVID navigator,” says Ashley Harnish, who leads up the health authority’s "long COVID" team.
Nova Scotians can access post-COVID help through an online self-assessment survey to be filled out at least three months after a COVID-19 diagnosis.
Harnish says the team is currently one year into its two-year pilot project, which is designed to help patients manage the symptoms.
Since each long COVID case presents differently, Harnish says the care steps taken vary by patient, but normally involve helping the individual learn to manage their chronic symptoms.
“And then handing back over to the primary care provider with some of those strategies that they would have learned with us,” she adds. “So, that they can manage their own health and any chronic conditions that may come out as a result of their long COVID.”
It's a system the other Maritime provinces don't have right now, with "long COVID" patients in both New Brunswick and Prince Edward Island calling for the establishment of clinics and services specific to the needs of "long COVID" patients.
In New Brunswick, government spokesperson Valerie Kilfoil said in a statement, “the Department of Health and both regional health authorities are looking at how best to deliver programs and services with those experiencing post COVID-19 condition, while meeting the objectives of the Provincial Health Plan.”
A request to Health PEI went unanswered.
Taylor says patients like her need more specialized medical care. She feels even the Nova Scotia model could use more resources, including on-site medical specialists, such as neurologists and cardiologists.
She herself has been on the long waitlist to see a neurologist since November, as the “brain fog” experienced by many "long COVID" patients persists.
Taylor says she shares her story so that others know they are not alone.