'Is this going to be my life now?': Here's what it’s like living with long COVID

Exploring the effects of long COVID on the brain Dr. Roger McIntyre, a professor of psychiatry and pharmacology at the University of Toronto, discusses how long COVID affects the brain.

Before catching COVID-19 in December 2020, Adriana Patino’s daily routine involved waking up at 4 a.m. and heading to the pool, where she practiced as a competitive swimmer. She trained twice a day, along with managing a full-time job.

Now, she struggles to leave her home.

“I have neurological damage to the extent that my brain can’t take the stimulation of just being outside,” the 37-year-old told CTVNews.ca in a telephone interview on Wednesday. “I've made it up to 10 minutes [before] I have to go back inside and just rest for a few hours.”

More than three months after her infection, Patino said she was still experiencing symptoms such as fatigue, shortness of breath and difficulty concentrating. It was at this point that she was diagnosed with long COVID, or the post COVID-19 condition.

Patino is one of dozens of Canadians who contacted CTVNews.ca to share their experiences with long COVID. The emailed responses have not all been independently verified.

According to the World Health Organization (WHO), long COVID occurs when physical or psychological symptoms of COVID-19 persist for more than three months after a person has been infected. Symptoms must last for at least two months and cannot be attributed to other causes.

Data released by Statistics Canada on Oct. 17 shows approximately 1.4 million Canadian adults said they had symptoms of COVID-19 at least three months after their infection. But according to the Public Health Agency of Canada (PHAC), there is currently no way of clearly diagnosing or treating long COVID.

Patino said she continues to suffer from lung damage as a result of her post COVID-19 condition, and her heart does not function properly. She has also been diagnosed with dysautonomia, an automatic nervous system disorder that can result in headaches, a racing heart and difficulty sleeping.

Patino speaks with her doctor weekly and alternates between lung and cognitive therapy, in addition to using inhalers and taking beta blockers. She has also received doses of the COVID-19 vaccine, as recommended by her doctor, she said.

“My whole day is managing my symptoms, I have to plan things way ahead,” said Patino, who lives in Vancouver. “This virus took my life but it didn’t kill me.”

STRUGGLES IN SEEKING TREATMENT

Existing treatments for long COVID are mainly supportive, said Dr. Kieran Quinn, a clinician scientist at the University of Toronto and Sinai Health System.

“This means that we use medications and self-education strategies to help people manage their symptoms,” he told CTVNews.ca in a telephone interview on Tuesday. “But we don't yet have any treatments that are proven to actually get at the underlying causes and improve [the] quality of life [for those] suffering with long COVID.”

Dallas Bargholz was admitted to a long COVID clinic in Calgary earlier this month. The 39-year-old father of three developed long COVID after his infection in January 2022. Attending the clinic twice a week has helped him better cope with his symptoms, he said, but they haven’t gone away. Bargholz, who is fully vaccinated, continues to struggle with chest pains, shortness of breath and an irregular heartbeat.

Along with its impact on his physical health, long COVID has also affected his mental health, Bargholz said. Before developing long COVID, he was a professional fighter in the International Medieval Combat Federation, on track to qualify to represent Team Canada at global tournaments.

But the physical exertion from exercising was making his post-COVID condition so severe that doctors advised him to stop working out, he said. Running and strength training were part of his mental health regime; without them, he began to feel depressed.

“I didn’t realize how much mental benefit I was receiving from sports,” Bargholz told CTVNews.ca on Wednesday in a telephone interview. “I never had a problem with depression [or] anxiety before [but] it all caught up to me.”

While he doesn’t consider the long COVID clinic particularly helpful from a physical perspective, it has helped him mentally, said Bargholz.

“When I first started attending the clinic, they were like, ‘Let's talk about feelings,’” he said. “And I’m like, ‘I don’t need this.’ But it's been more helpful than I anticipated.”

‘I’VE BEEN TOLD IT’S ALL IN MY HEAD’

Diagnosing long COVID can also be a struggle for patients and health-care providers, as the condition can present itself differently from person to person, Quinn said. Additionally, a wide range of symptoms have been associated with long COVID, and the WHO does not maintain specific list of symptoms used to determine whether or not a person has long COVID. However, common symptoms include fatigue, shortness of breath, heart palpitations, anxiety and depression.

“Not all long COVID is created equal,” said Quinn. “Some people might have very mild symptoms that persist beyond three months, and some people might have very debilitating symptoms … So you can imagine how that affect the health care that they need.”

For some patients experiencing long COVID, getting health experts to acknowledge their symptoms has also been a challenge. Raven Thomson from Edmonton said she has been living with long COVID since January. To this day, she continues to experience short-term memory loss and symptoms of chronic fatigue syndrome, which can include difficulty concentrating, headaches and joint pain.

“Symptoms come in waves, they change constantly which leads doctors to be dismissive,” Thomson wrote in an email to CTVNews.ca on Oct. 14. “I've been told it's all in my head [and you’re] not doing enough to get better.”

Some of the patients Quinn works with have shared similar stories -- not feeling as though other health-care providers are taking their concerns seriously or accepting that their condition is real.

“This is a brand new diagnosis from a brand new disease,” Quinn said. “One of the consequences of that is there are probably many people who are suffering and not getting the help that they may need because it's not being recognized by themselves or by their health-care providers as long COVID.”

One way to address some of these challenges is by offering more education and awareness around long COVID, Quinn said. This involves sharing strategies on how patients can manage their own symptoms, as well as better educating providers on how to support those with long COVID.

LONG-HAULERS TURN TO SUPPORT GROUPS

It was after being met with skepticism from her family doctor that Patino joined the Facebook support group Long Covid Canada. She is now one of the group’s head administrators, managing more than 3,500 members. The membership is growing each month, she said.

“I’ve made it a personal mission to be as loud as I possibly can,” Patino said. “Having a support group of people who … understand the struggles that you’re having are absolutely essential because for a lot of us, our own family members don’t believe us.”

One of the group’s members, Carol Gross, has had long COVID since January. The 64-year-old has had three doses of the COVID-19 vaccine and lives in Parry Sound, Ont., where long COVID medical facilities are limited, she said.

“Although I have been referred to specialists out of town, I have yet to see one,” Gross wrote in an email to CTVNews.ca on Oct. 14. “I am told wait times are up to two years."

While trying to cope with her symptoms, the Long Covid Canada Facebook group has been her “lifeline,” she said. Gross and other members of the group continue to reach out to all levels of government for additional support for those with long COVID by writing letters and making phone calls.

Gross’ home province of Ontario, for example, announced it will be making decisions regarding funding for a long COVID strategy in the near future. However, no updates have been shared with the public since the government’s announcement on Sept. 18. In its latest budget, the federal government also announced $20 million would be going towards research on the long-term effects of COVID-19 infections over the next five years.

Elaine Binnema said she has also used support groups to get advice from others based on their personal experience with the condition.

“It is very helpful in not feeling alone and normalizing the experience,” Binnema wrote in an email to CTVNews.ca on Oct. 15.

Binnema, who lives in Chillliwack, B.C., developed long COVID after contracting the virus in January. Her symptoms include fatigue, head congestion and stomach issues, she said. The 54-year-old has also received three doses of the COVID-19 vaccine. One of the toughest parts of having long COVID is not knowing how she is going to feel from day to day, said Binnema.

“One day might be a little bit better than another, and then the next day you just get back a symptom that you haven't had [for months],” she said in an interview with CTVNews.ca on Wednesday. “Part of you goes, ‘Is this going to be my life now?’”

Melissa Noftall said she is doing what she can to adjust to her new life. Based in Edmonton, the 35-year-old mother of three has been living with COVID-19 symptoms since she caught the virus in March 2021. These include parosmia – a distorted sense of smell – as well as fatigue and brain fog, she said. She has received three doses of the COVID-19 vaccine.

“I had to adapt my entire life,” she wrote in an email to CTVNews.ca on Oct. 14. “I write everything down [and] I have reminders and routines … I have to constantly tell people why I was so different [than] the person I was before.”

Living with long COVID has changed her outlook on life as well, Noftall said.

“It changes your perception of things and what’s actually important,” Noftall told CTVNews.ca in a phone interview on Wednesday. “I'm OK with dishes in the sink now, because I'm taking that time with my kids.”

With files from The Canadian Press