Almost a year after 15-year-old Kayleigh McCue tested positive for COVID-19, the once active young athlete says she still gets constant headaches, fatigue, nausea and has trouble concentrating.
As students return to school across Ontario this week, Kayleigh and her mother Desiree McCue are speaking out about the symptoms of long COVID, hoping it might raise awareness and keep students vigilant about the potential dangers of contracting the virus.
Prior to coming down with COVID-19 in October 2020, Kayleigh was an active member of her high school, Sir Oliver Mowat Collegiate Institute at Lawrence Avenue East and Port Union Road in southeast Scarborough, playing basketball, hockey and running track.
In the past year, she hasn't been able to play any sports at all.
"When everything happened ... I couldn't play anything because I was so tired and I couldn't eat," she said.
"I just felt really tired and I couldn't really get up in the mornings, and if I started walking, I'd feel really sick."
While Kayleigh had most of the typical COVID-19 symptoms when she first contracted the novel coronavirus — headaches, nausea, vomiting, fatigue, shortness of breath and loss of taste and smell — she said it's been the long-term effects that have been the most jarring.
'You feel like a failure'
After initially recovering from the virus after about two or three weeks, the teenager said she started feeling ill again in March 2021.
She said her symptoms returned in the form of nausea, vomiting, coughing and vomiting up blood, headaches and constant fatigue, as well as unexplained bruising on her arms and chest.
"I was a little scared because I thought I had COVID again, but we got tested and it came back negative," she said.
While doctors initially said her daughter had "mental health issues," Desiree became convinced it was long COVID.
WATCH | Teen with long COVID highlights struggle with prolonged illness:
Her family doctor had been "fantastic" in trying to get them connected with specialists and infectious disease experts, she said, but she was "frustrated" because "there's not enough known about it, so they don't know how to direct us."
"As a mother, you feel like a failure cause you can't take care of your kid, you can't fix her," she said.
"It's tough because you don't know where to go or what this is, There's so much unknown about this virus that it terrifies me and it angers me."
Due to the severity of her health issues, Kayleigh was forced to become a part-time student last year and Desiree worries that if she can't keep up this year, she won't be able to graduate with her friends.
"I'm scared that it's not going to go away sometimes," Kayleigh said.
So Desiree joined a Facebook group, COVID Long-Haulers Support Group Canada, to share pictures of Kayleigh's bruising and details about her health issues, and said the responses "made me cry", as many others had had similar experiences.
The founder of that group, Susie Goulding, told CBC News "there's no understanding in the medical community of what's happening with these kids."
"There's a misunderstanding at a very ground level across the board. There's no information to be given. So it becomes very difficult to understand or get a child diagnosed with long COVID," she said.
Goulding suffers from long COVID herself after contracting the virus in March 2020 and suffering from ongoing speech issues, brain fog and fatigue.
Only after an intense three-month period of rehabilitation, involving occupational therapy, acupuncture, counselling and naturopathy, did she notice her symptoms start to improve.
She hoped governments would direct more money and resources and funding to research long COVID — as her Facebook group now has 14,000 members and is growing.
"The issues that 'long haulers' are having are really serious issues. They're not like symptoms that just go away; these are debilitating issues that can really turn someone's life upside down."
Dr. Anu Wadhwa, staff physician in the Division of Infectious Diseases at Toronto's Hospital for Sick Children, said the hospital has seen about 30 long COVID patients since the beginning of the pandemic.
"Most of these patients have seen their symptoms improve over time and care is based on the unique set of symptoms an individual patient may be experiencing," she said.
"Based on our clinical experience, long COVID seems to affect approximately one to two per cent of pediatric patients who had an acute COVID-19 infection."
'People aren't believed'
Dr. Anna Banerji, a paediatric infectious-disease specialist at the Dalla Lana School of Public Health, said one of the key concerns she has about long-haul COVID patients is that "these people aren't believed."
"You have these people who were yoga teachers or would do exercise several times a week or run half marathons and now they can barely get out of bed — and the biggest problem for a lot of these people is that no one takes them seriously," she said.
She said research shows that anywhere between two to 10 per cent of those who contract COVID-19 will suffer from long-term symptoms. Many will recover after a period of "interventions" that include increased exercise, rest, sleep and a focus on their diet, but some will not.
"Most family doctors really don't understand COVID long-haulers' symptoms. A lot of cardiologists and respirologists just don't have the volume yet to understand that some of the symptoms are related to COVID."
Meanwhile, Desiree hopes her daughter's experience will shed some light on the plight of those suffering from long COVID across the country, as well as providing some impetus for research.
"I want doctors to take it serious and actually believe her and look into it," she said.
"If we can reach one family that says 'Oh my goodness, I'm feeling the same way, I thought I was alone' — that's how we felt until other families reached out to us."