My life with long COVID

There is one thing people with long COVID should never say: “I have long COVID.” Most people don’t know what it is, a good percentage will think you have COVID itself and have had it for a “long” time, and the rest will rise to offer you a seat on the subway.

People with long COVID don’t want a seat. What they want is a couch with plumped-up cushions, a cool breeze on their face, Taylor Swift on low, and two hours of alone time.

As I, fully vaccinated, recover from a year of post-COVID syndrome, I dream of a summer in a Swiss sanatorium — they still exist — breathing hyper-oxygenated air vented past candytuft clouds over the Alps. A nurse brings a restorative tisane, a posset.

You can’t get that kind of thing on the TTC. People will take you for a vagrant, or worse, a bore. I will bore you now about the state of the long COVID cohort, the club no one ever dreamed existed or wished to join. Someone has to do it.

People who developed the illness some time after getting short COVID deserve only the best advice. But few journalists cover long-form COVID. Doctors tune out when you mention it because they are as mystified as you are.

But more than 1.4 million Canadians — about 15 per cent of adults who contracted COVID-19 — have symptoms three months or more after their initial infection. That’s a huge iceberg.

Children get it. Men get it, although not as often as women do. By different paths and degrees, it flattens them all.

Long COVID has a wide range of symptoms, including post-exertional malaise (sudden and extreme fatigue), breathlessness, coughing, chest pain, brain fog, insomnia, muscle pain, headaches, and a loss of taste and smell that makes eating a chore. Wine tastes like wire. Meat reeks.

My symptoms are milder than most people’s, but they wax and wane. You feel tubercular, then spring back. So far, there is almost no medical care for long COVID, and the Ontario government still has no strategy for this quiet condition. But there is some advice on managing the weight of the albatross.

You plan each day with Presbyterian care, hoping for productiveness but pacing yourself, shunning crazy ambitions like shovelling snow or hauling groceries.

This increasingly chaotic world is full of strange and entertaining concepts like Rep. George Santos and Pierre “Skippy” Poilievre, but you watch political events unfolding from behind a thick pane of glass. You are distant and preoccupied.

You can work from home, say, but if you overextend, you’ll crash, sending you back into hibernation.

Crucially, long-haulers don’t look ill. Just as disabled people are upbraided for not looking sufficiently hobbled for their free parking pass, it’s difficult to convince people that you’re running on fumes.

The tiredness inside us is like a cave unvisited by humans, a great hollowness. You are the thing that holds the tiredness, yet it’s still bigger than you.

Ongoing research into causes and cures has many threads. It might be that mitochondria, the body’s power plants, are being starved of fuel or that microclots, invisible in scans, are clogging blood flow.

Or the virus is still inside you, or the immune system remains on constant high alert which causes inflammation.

One scientist calls it a “deceitful virus,” meaning that just when we think we understand it, it keeps changing, keeps surprising us.

Like all long-haulers, I had many things planned for the year. I wanted to renovate the house (my first place), go back to work in the office (second place), find a local hangout (third place), and visit Japan (distant place). By restricting where I go, I am gradually improving. But at what cost? Stasis.

What helps? Comedy. Pie. Reading. The scaffolding of work. People, mainly toddlers. The usual.

Many people with long COVID don’t have the option of working from home, or working at all, or help from family and friends, or an emergency financial cushion. They have been accused of malingering, have lost tenancies and houses. They feel they have no allies. Imagine being elderly or a newcomer to Canada, already short of defences, and coping with this.

I write this to tell long-haulers that they’re not alone. Ask anyone. They’ll have heard stories, they know someone, they will help.

After eight months, I finally was accepted into a virtual clinic offering two months of twice-weekly sessions on coping with long COVID, a series of Zooms beamed into our crowded lifeboat.

We all feel absolutely dreadful. We have hope though. This is one of the strangest things that has ever happened in our lives and we, Canadian and cautious, talk openly about the shabby aftermath of having been hit by a stray bullet from a long gun.