When Nada Mokhtar Forbes started to feel chest pain after returning from a spring break trip to visit family in Egypt, she immediately knew something was wrong.
“It didn’t feel normal, didn’t feel like a regular cold or flu, it felt really weird,” she told HuffPost Canada.
On March 29, the 37-year-old mother of two received a viral test to see if she had COVID-19. A few days later, the results came back positive — Mokhtar Forbes had COVID-19, one of the early travel-related cases in Canada.
When she was first diagnosed, Canada was in a much different place than it is now. People were still rushing to hoard toilet paper and the prime minister hadn’t even warned people not to speak “moistly.” Big summer events like the Calgary Stampede were still tentatively happening, and the Toronto Blue Jays’ season was set to kick off in the coming weeks.
Around the same time Mokhtar Forbes started to feel ill, her husband also started feeling sick. Her two kids started showing minor symptoms within a few weeks.
Her husband and kids recovered relatively quickly after a few weeks. But five months later, Mokhtar Forbes is still feeling the effects of the virus.
In the ensuing weeks after her positive test, she ended up in the emergency room three times after being unable to to breathe. She developed constant chest pain, and a neurological “fog” where she couldn’t even concentrate on the TV or help her kids with their homework.
“Now, I’m [on] week 18,” she said. “And I still get tired, I’m still feeling the effects of the virus.”
The long haul
Mokhtar Forbes is a “COVID-19 long-hauler,” a phrase used to describe people who experience lingering or long-term symptoms as a result of contracting the novel coronavirus. For many, it’s lasting fatigue, while others have developed everything from neurological conditions to heart problems to a loss of taste and smell.
Less than a year since the virus first emerged, we still know very little about the true scale of the long-term impacts of people who contract COVID-19.
An early study out of Italy published in July showed that 87 per cent of hospitalized patients still showed symptoms two months after the virus first showed itself. The Atlantic reported that a team from the U.S. Centers for Disease Control and Prevention found that a third of 270 non-hospitalized patients hadn’t returned to their usual state of health after two weeks — the usual recovery time for common influenza. A U.K. study found that patients diagnosed with COVID-19 remained “highly symptomatic” eight to 12 weeks after first becoming sick.
WATCH: Coronavirus “long-haulers” still suffering from lingering effects. Story continues below.
By those numbers, there are likely thousands of people across Canada experiencing the lingering effects long after they were supposed to “get better.” Many tested positive right away, while others waited weeks with symptoms to get tested, only to eventually test negative. Others believe they had false negative test results.
“It comes in waves”
After weeks isolated with severe symptoms, Mokhtar Forbes thought she was finally starting to recover in late May.
“I was sick for about eight weeks, like really, really sick with no breaks at all. And then after those eight weeks, I started to get better. And I thought I was recovering,” she said.
She said for three weeks she was “fully recovered” and returned to a sense of normalcy, driving her kids around and cycling 10 kilometres a day. But then the symptoms returned — the shortness of breath, the inability to expand her lungs, the headaches, the elevated heart rate and, most notably, the fatigue.
“I was unable to get out of the bed, like I was unable to like walk downstairs,” she said.
She said she couldn’t help her kids with their online learning because she didn’t have enough breath to speak. She couldn’t care for her dog. Yet her husband, who got sick around the same time as her, was feeling better.
Since that initial relapse, Mokhtar Forbes has undergone a rollercoaster of returning and new symptoms, despite being given the “all clear” of negative test results in April and again in June.
Jackie Strandberg, a 36-year-old long-hauler in Ottawa, said she started to get sick on April 7, but received a negative COVID-19 test.
“I honestly thought I was going insane, especially since I was getting negative COVID results but the doctors were saying ‘Yeah, you probably have COVID,’” she told HuffPost Canada. “I had symptoms of COVID and I was told by a doctor in the emergency room, ‘You need to treat yourself like you have COVID, you need to go on quarantine.’”
Strandberg had several stints in the ensuing weeks in the hospital dealing with an “awful” cough and other symptoms.
And now, months later, the cough is gone, but the other symptoms persist.
“I’m still exhausted all the time,” she said. “I have asthma now ... before this I had no breathing problems whatsoever.”
“I was sick for about eight weeks like really really sick with no breaks at all. And then after those eight weeks I started to get better. And I thought I was recovering.”
Like Mokhtar Forbes, Strandberg said she’ll start to think she’s feeling better but another wave of fatigue will hit.
“I’ll feel really good to speak so then I try to run a couple laps around the high school field I live close to, and then the next day, I was just wrecked,” she said. “When you say exhaustion, it’s not just like, ‘Oh I feel tired.’ It’s really that I physically sleep for 16-18 hours a day sometimes.”
Tracey Thompson said she’s experienced the “big three” symptoms persisting: fatigue, an elevated heart rate and difficult breathing. The 52-year-old says she was in “perfect health” prior to getting sick.
“The fatigue is huge,” she said. “There are days where I can’t pick up a teacup.”
Other recovered COVID-19 patients reported prolonged nausea or a loss of smell or taste. One long-hauler said certain foods like garlic and eggs “taste like fire” now, like the smell of smoke.
Still so much we don’t know
Dr. Isaac Bogoch, an infectious disease specialist at the University of Toronto, said long-lasting fatigue, along with a change in taste or smell, is one of the most common long-term symptoms experienced by long-haulers.
“Most people who get this seem to recover and seem to have no lingering side effects. It’s clear that there is still a percentage of people who have prolonged effects from this virus,” Bogoch told HuffPost Canada.
He said the sample size of true COVID-19 long-haulers is so small at this point, the medical community is still working to understand what that group actually looks like.
“Usually the people that I’m seeing have very mild, persistent symptoms and they’re certainly able to get about their day and go through their day,” Bogoch said.
That’s not to say people aren’t experiencing severe long-term effects, he added. More research is needed to determine what symptoms are caused by COVID-19 and what might come from pre-existing conditions.
“I think we’re gonna find that some individuals had COVID-19 and truly have lingering symptoms, and other people might not have had COVID-19 but unfortunately, believe that they’ve had the infection and have lingering symptoms,” he said.
“Most people who get this seem to recover and seem to have no lingering side effects. It’s clear that there is still a percentage of people who have prolonged effects from this virus.”
Several studies are being conducted in Canada with COVID-19-positive patients. Experts like Bogoch hope this will help researchers understand the difference between pre-existing conditions and the true effects of the virus.
But ultimately, COVID-19 or not, properly caring for people is what’s most important.
“At the end of the day, whether people have had documented infection or not, everybody needs care,” Bogoch said. “Everybody needs to be listened to and everybody needs to be taken seriously.”
WATCH: COVID-19 symptoms may last beyond two weeks. Story continues below.
All of the long-haulers I spoke to said they hope the medical community continues to research not only the cause of their symptoms, but the best ways to care for them.
“I want people to know this is a real ongoing unaddressed medical concern in the country. And mostly, I just want doctors to get on board,” Thompson said. “I want to be able to access care. I want other people to be able to access care.”
Both Mokhtar Forbes and Strandberg also reported difficulties navigating the medical system, due to the variety of symptoms they experienced.
“You’ve got so many different symptoms, affecting so many different organs and systems, that you need to be seen by a neurologist and a cardiologist and a respirologist, and it’s just crazy because they’re referring you one by one to each of these specialists,” Mohktar Forbes said.
Many COVID-19 long-haulers have come together on social media in Facebook groups and Slack channels to share their experiences and advise each other.
Mokhtar Forbes said it’s been reassuring to hear from others going through the same experience with lingering symptoms.
“It’s been great because you’re able to connect with people who are going through the exact same thing,” she said. “You don’t feel so alone.”
Thompson said it can get overwhelming with sketchy medical advice or people’s exaggerated accounts of symptoms.
“Sometimes it’s very beneficial and you can’t spend too much time there because it’s easy to find yourself thinking about, you know, the possible things that go wrong,” she said.
But ultimately, it’s good to know she’s not alone.
“Whenever someone new joins, the first thing they say is, ‘I’m so glad I found you. I thought I was crazy,’ because people are telling you that you’re fine, and we’re not fine,” she said.
“I haven’t been fine for 150 days.”