I have a chronic illness. I know what the COVID-19 long-haulers are going through

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Nadine Sander-Green is a writer living in B.C.

By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and with a little training, time and guts, it would perform.

Right before my 33rd birthday last November, and just months before COVID-19 hit North America, I was struck with a high fever, the kind where I confused my bed for a life raft and my floor for the Atlantic Ocean. This strange virus kept me locked in my apartment for weeks. I waited patiently to feel better, but I never fully recovered.

It took me a month to admit that something was very wrong with my body. When I went to the doctor, he seemed perplexed and amused by my smorgasbord of symptoms. He gave me a prescription for antacids. “I’ve never seen anything like this!” he said. I didn’t fill the prescription.

Deep down, I already knew what was wrong with me: myalgic encephalomyelitis (ME), or chronic fatigue syndrome. The family curse. My brother, sister and mother – including me, four out of the six in my family – all have ME, a chronic disease that affects more than half a million Canadians and is often triggered by a viral infection.

Almost one year later, I still can’t walk more than two blocks. If I do, my body rebels. First, a headache, then my heart beats wildly in my chest. If I keep walking – even in a slow, cautious way – my thighs grow heavy and exhausted as if I have just run 10 kilometres. The next morning I will wake up with what feels like a combination of a hangover and a flu.

With most diseases, physical activity helps with recovery. With ME, exertion is the very thing that triggers a profound worsening of symptoms. This is called a crash, or in formal terms, postexertional malaise. Some patients will crash from climbing a flight of stairs, doing a load of laundry or even reading a book. In severe cases, it can be triggered by simply rolling over in bed. It can take days, or even weeks, to recover from a crash.

What’s the treatment? We don’t know. Even more frustrating: We haven’t even figured out the problem. Doctors still don’t understand what is happening in our bodies.

Patients often still face disbelief, a kind of medical gaslighting where their physical symptoms are downplayed as being all in their heads. This kind of dismissal can lead to much deeper damage, such as declining mental health from lack of hope and support, or the attempt to recover by trial and error, including exercising – the very thing that will make a patient sicker.

ME has slowly become more recognized and researched over the past decade, including the work of Nobel laureates and a recent $1.4-million funding announcement from the Canadian government. Professor Alain Moreau, one of a small group of Canadian researchers, has called ME the last "medical conundrum of the 21st century.”

This conundrum is no coincidence – the disease has a myriad of factors working against it. It isn’t taught in medical schools. Around 75 per cent of people with ME are women, and it is no secret that women’s chronic pain has historically been ignored and denied. Although ME was recognized by the World Health Organization as a disease in 1969, in the mid-1980s it was coined chronic fatigue syndrome, a name that wildly underrepresented its severity and contributed to a cultural ignorance that has led to a dearth of funding. Without enough research, it’s hard to even know how many people suffer from ME. And without reliable statistics, no one really understands just how debilitating and common ME is.

After being sick for three months, I still could not walk the aisles at the grocery store or up the staircase at work without my body ending up in a flu-like state.

In February, I moved 3,000 kilometres from the home I loved in Yukon and retreated into my childhood bedroom. I stared at the glow-in-the-dark stars on the wall, furious and ashamed of my helpless body. How much of my life, I wondered, would I lose? I tried not to think about my mother in the bedroom next door. She has been sick with ME since I was two years old. Was I destined to never recover?

And then it was March, and the world was slammed with a pandemic. We all shut down, sheltered in place and washed our hands obsessively. We morbidly listened to the numbers of cases increase. Just as I didn’t know how to process the mysterious changes to my own body, no one quite knew how to process the COVID-19 statistics of the infected, the recovered and the dead.

Our only solace was to imagine the light at the end of the tunnel. If we just waited patiently for the virus to sweep through, could we move on, forget about this nightmare?

As spring turned to summer, I noticed the word “recovered” was becoming more nuanced. The Atlantic published a story about thousands of people who, months after contracting COVID-19, were still not recovered. They called themselves COVID-19 long-haulers. Their symptoms ranged from fatigue, brain fog and body aches to chills, sweats and trouble sleeping, among others. Many of these long-haulers had experienced a “mild” case of COVID-19. They did not fit the tidy narrative of how humans recover from viral infections within weeks, and fully.

Now, some long-haulers have been sick for six months or more, with no end in sight.

“It is mild relative to dying in a hospital, but this virus has ruined my life,” said Vonny LeClerc, the main subject in the Atlantic story who was then on day 66 of COVID-19. “Even reading a book is challenging and exhausting. What small joys other people are experiencing in lockdown – yoga, bread baking – are beyond the realms of possibility for me.”

Long-haulers quickly banded together in online forums for support. On Facebook, “COVID Long Haulers Support Group Canada” has more than 4,000 members. The Body Politic Slack group has more than 14,000 members from around the world, with channels specifically for people suffering for longer than 30 or 90 days.

In the Atlantic’s follow-up story, a specialist who has started a program at New York’s Mount Sinai Hospital dedicated to caring for long-haulers said that most of his patients were women and formerly fit, with an average age of 44. And 90 per cent of them experience postexertional malaise: a severe worsening of their symptoms after even mild physical exertion.

Not only are these long-haulers' physical symptoms and demographics similar to those of ME – it’s young, healthy women who most often get the disease – but so is their experience navigating a health care system that so often ignores and belittles those who they cannot categorize.

Half of the respondents in a study led by long-haulers themselves reported “conflicting outlooks and advice from different medical staff,” while more than 20 per cent reported having been “not supported” at all. They were told to stay home, and sometimes denied resources such as prescriptions and further testing.

I have to admit that reading the long-haulers' stories gave me a guilty sense of relief. Suddenly, my family was not so alone. To see such a hidden, misunderstood part of my life in the spotlight provided a kind of solace I had never felt before.

The truth is, the narrative of chronic illness is frustrating. Our brains are hard-wired for the sensationalism of story: for a beginning, a middle and an end. My family’s story is stuck in the murky middle.

My mother was an Olympic cross-country skier in her teens and led a healthy, active life until she got sick when she was 35, on my second birthday. Convinced she was just out of shape, she tried running to get better. After that, she could hardly roll over in bed. My mother spent years hidden in her bedroom with the whole menu of symptoms: unrelenting fatigue, a racing heart, sore throat, fever and chills and brain fog, to name only a few. Her family doctor instructed her to wait it out. One specialist suggested more intellectual stimulation. Had she tried chess? Another doctor’s main concern was not my mother’s symptoms, but the fact that my father had to do the majority of the housework.

Now, after waxing and waning through 31 years of illness, she has enough energy to scramble an egg, sitting on a stool next to the stove.

My brother developed ME when he was 15 years old, ending years of intense training for cross-country skiing. Although he largely recovered for the next two decades, in the past year the disease has come back to haunt him. Now, he makes his Zoom work calls lying in bed. He has gone for months without leaving home.

My sister was a whitewater-raft guide who was known for her strength and endurance. She battled a series of infections last fall and suddenly found herself unable to hold a book up for more than a few minutes. She now rides a mobility scooter around town.

I am the healthiest of my sick siblings. I can work from home, write, socialize and have gained enough energy back to live independently. I suppose, in one sense, this makes me lucky. Still, I do not know how to comprehend the magnitude of what I have lost. One year ago I ran a half-marathon. Today, I still can’t walk more than two blocks without paying for it for days.

The word shocking does not do our story justice. How did my siblings and I collapse like dominoes? How could we lose so much freedom and independence, so quickly? Our story doesn’t fit the narrative of how young, healthy people get sick and how they recover.

It’s deeply uncomfortable to acknowledge your health could be taken away in an instant. To not know why, or if recovery will ever come, is more than uncomfortable for healthy people to think about – it’s unbearable.

It’s easier, perhaps, to just look away.

The word “long-haulers” is becoming more common within our pandemic lexicon. Every day, a new story is published about a COVID-19 patient who is still sick after months. Some are gasping for air at night. Others are experiencing debilitating fatigue. Many are not being taken seriously by their doctors.

Postviral illnesses are more common than you might think. After the SARS outbreak in the early 2000s, one study found that 27 per cent of 233 survivors met the criteria for ME several years later. SARS infected just 8,000 people worldwide. COVID-19, so far, has infected 38 million.

We don’t have to do the math to know that we will see a wave of chronic illness in the coming years. Some people will eventually recover. Some people will be diagnosed with ME, while others will be diagnosed with other chronic conditions. Others will be misdiagnosed. Some will struggle for years, even a lifetime, without a diagnosis at all.

From witnessing my mother’s illness my whole life, what I know is this: paying attention to those who are suffering will be a struggle. We want the satisfaction of closure. We don’t want to be left in the pain of the pandemic after there is a vaccine, or whatever ends this nightmare. There are some things in life we are willfully ignorant toward, and chronic illnesses – especially those that are still a mystery and keep patients at home, out of sight – are one of them.

As uncomfortable as it is, we need to stop looking away from what we don’t understand. We need to believe patients. We need our universities to teach medical students how to treat with deep respect those with illnesses they don’t yet understand. We need a massive amount of funding for research into diseases such as ME, which don’t fit within our current medical paradigm and which have the capacity to deepen understanding of the human body. Perhaps most important, we need a cultural shift toward radical empathy, so whatever the illness, no one feels like my family members have: silenced and hopeless.

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