"You can't push through this": Here's what it's like for one COVID-19 long hauler

As provinces ease restrictions and try to return to a pre-pandemic normal, some COVID-19 survivors wonder if they will ever get their lives back.

News about long COVID, or COVID long haulers, started surfacing a few months into the pandemic. People whose symptoms never let up after the initial infection began speaking up and calling attention to how COVID-19 changed their lives.

The term long COVID was reportedly coined by patients in May 2020. It wouldn’t be until October of 2021 until the World Health Organization (WHO) provided an official definition. Some 10% to 20% of people who get a COVID-19 infection end up having long COVID. Studies have shown that vaccination could help prevent it, but there’s no guarantee.

The WHO calls it “post-COVID-19 condition” and defines it as: “Post-COVID-19 condition is defined as the illness that occurs in people who have a history of probable or confirmed SARS-CoV-2 infection; usually within three months from the onset of COVID-19, with symptoms and effects that last for at least two months. The symptoms and effects of post COVID-19 condition cannot be explained by an alternative diagnosis.”

While officially recognized by organizations like the WHO and the Canadian government, long haulers are still left with few options for treatment. While definitions and awareness are important, it doesn’t quite highlight just how severe the condition can be.

Living with Long COVID

“I’m living a half life, like a twilight,” Steve McCauley, a long hauler and an admin for the Long COVID Canada Facebook group.

He’s not the only one to be facing life changing long-term symptoms from COVID-19. Some 3,000 Canadians with long COVID have joined the Facebook group he helps moderate, and the number keeps growing.

“There are still people coming and joining, there are still people who are saying, ‘This is new.’ They got sick last year 2021, and they’re now starting to see the symptoms,” he said.

So what is it like being a long hauler? Symptoms vary across those suffering from the condition, but the vast majority suffer from fatigue, among other symptoms. This isn’t your run-of-the-mill, didn’t-sleep-well fatigue.

“It’s unlike anything you’ve ever felt in your life,” said McCauley.

He said that when he crashes, it’s not a matter of knowing he needs to take a break, he might actually fall over in exhaustion. It makes taking on daily tasks or even visiting with friends difficult, and possibly dangerous.

“You find yourself sitting with your head between your knees and there you remain for 10 or 15 minutes and then, if you’re lucky, you can get home or back to your car or what have you,” he said.

Another common symptom felt by many long haulers is the brain fog. Like with the fatigue, it’s not your average brain fog.

“Everybody reports the brain fog, that when you’re really knee deep in it, it’s so hard to think,” he said. “Sometimes people can’t speak, you can’t form words.”

Others have reported neurological symptoms, vascular symptoms and gastrointestinal symptoms.

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The longest of long haulers

McCauley is among some of the longest long haulers. He came down with COVID-19 in February 2020, before testing was available to everyone. At the time, he didn’t think he had COVID-19, he didn’t fit the criteria initially set out.

He was never admitted to hospital with the acute infection, but he said it was the most sick he’s been in his life. He coughed so hard he developed a hernia, his ribs separated from the walls of his chest from coughing so hard.

“I was basically in bed 12 hours a day for two months,” he said.

After those rough two months his symptoms began to slowly improve, but come the spring, he plateaued. His doctor began running tests to rule out other illnesses, like cancer.

“It was only later in the summer, around July or August of 2020, that I was investigating my symptoms online,” he said. “I discovered the idea of long haulers, the self-coined term within the community, of people who got sick and never got better.”

It was then that he realized he must have had COVID-19. Luckily, he had a physician who took him and his symptoms seriously, eventually diagnosing him with a clinical case of long COVID-19 after a gamut of tests.

In November of 2020, McCauley discovered that he had developed heart and lung issues, which are presumed to be related to his COVID-19 infection.

He had various tests done and doctors found that he had nodules throughout his lungs, his lymph nodes had calcification, and his heart, which already troubled him, suddenly got worse. He’s not certain that the heart troubles, which resulted in a stent being put in, were related to or exacerbated by COVID, but the timing lines up.

As for treatments, McCauley said Canada lags in the research of this area. The doctor he sees at a long COVID clinic in BC told him he didn’t have a treatment for him, but to keep up with seeing his specialists.

As people continue to join the Long COVID Canada Facebook group, he advises anyone thinking they have long COVID to take it easy and not to push yourself too hard.

“You can’t push through this” he said. “You push yourself, you will crash. That is the most painful lesson the long haulers learn right they try to continue working.

You will crash and you will burn and you will get worse and you will set yourself back, if you push it. This is not a disease that allows you to push you have to rest.”

It is time for an action plan

Despite how much his life has changed since coming down with COVID-19 over two years ago, he still feels like he’s one of the lucky ones. At least among long haulers.

“It sounds weird, I have to consider myself fortunate. I’m partly functional,” he said.

He said some of the Facebook group admins are unable to work, are stuck in bed 18 hours a day, a member of the group lost their home after being unable to work, and McCauley said she’s not the only one.

The Long COVID Canada Facebook group has been busy raising awareness since 2020, but the group wants to turn that awareness into action. It wants to get financial support for those who can no longer work, they want more research in Canada and they want medical recognition.

“Canada has some excellent research facilities, but there’s no documentation that anybody’s doing anything at this time,” said McCauley.