Two years with Long Covid

Despite millions affected by Long COVID, there’s still no roadmap. Here's my story.

Before and after. Two selves held in one frame. My sweet pal, Justine Crawford, illustrated this stunning comic from a vision I sketched out, bringing it to life with so much care and clarity. A glimpse at the shift (the before I miss, and the after I’m still learning to carry).

Dear reader,

The first time I collapsed, I was chasing a story. A hike up Burnaby Mountain to photograph fireweed for The Narwhal should have been routine. But halfway up the trail, my heart lurched. My legs felt like lead. My vision tunnelled. The world tilted.

I sat on the dirt and checked my pulse: nearly 200 beats per minute.

At first, I chalked it up to dehydration. It was an unbearably hot summer day. Maybe I’d pushed too hard. Maybe I didn’t sleep well the night before. But when the dizziness didn’t pass, when my heart rate kept spiking at random, when I woke up gripping the sleeve of an ER nurse’s powder blue scrubs, I knew something was wrong.

What followed was a cycle familiar to nearly 1.4 million Canadians living with Long COVID — emergency room visits, inconclusive tests, and doctors shrugging at symptoms they couldn’t measure. Now, as I reach my two-year anniversary and others mark their fifth, the medical system still doesn’t have answers.

For those of us living in the aftermath, the questions have never felt more urgent.

It was the end of April 2023 when COVID-19 finally got me. It was the first and only time I’ve had it. I had most of the typical symptoms, but they were mild: fever and fatigue, body aches, loss of taste and smell. It didn’t last long. Two weeks later, when I smelled the sulphurous scent of crossing the Alex Fraser Bridge on the way to school, I thought I had fully recovered (I’ve never felt more grateful for the smell of a wastewater plant in my life).

In the months that followed, my world shrank. Every part of my life drifted further away like a shoreline I kept swimming toward while the current kept pulling me elsewhere. I grieve the way I used to move through the world, not because my current life is lesser, but because no one prepared me for this shift, and the world makes it so much harder than it has to be.

For the first year, I measured my days in symptoms. A spreadsheet replaced my calendar. Temperature dysregulation. Shortness of breath. Cognitive impairments. Histamine reactions. Dysphagia. Nocturnal Seizures. Severe insomnia. The sudden, electric jolts of adrenaline that rushed through my body for no reason at all. Simple tasks became impossible correlations and calculations — if I showered in the morning, would I have enough energy to make dinner? If I walked to the store, would I black out on the way home? How was I going to deal with this all on my own?

At first, I kept waiting to bounce back. I told myself it was just taking longer than expected. Fatigue turned into vertigo. Brain fog became forgetfulness, then static, then silence. Weeks blurred into months, then years, and though the symptoms lessened, they never fully left. Each day was a negotiation between what I wanted to do and what my body would allow, and I had to learn how to adapt.

Since then, I have lost friends and family members who refuse to talk to me because I couldn’t respond to their text messages. I have spent thousands of dollars of my own money on treatments that didn’t work. My body has changed in ways I didn’t expect. Sometimes I catch my reflection and feel like I’m meeting someone new, someone I’m still learning how to care for.

During my initial hospital visit, nurses gathered around, assessing my condition, conducting blood pressure checks, and administering multiple rounds of blood tests and various X-rays. Their voices lowered as they discussed arranging for an MRI and a Holter monitor, mentioning the possibility of myocarditis. "She's so young and healthy," murmured one nurse behind the faded pink curtains.

Over nine months, I underwent a battery of medical examinations, ranging from cardiac stress tests to 24-hour urine cortisol tests, even some peculiar ones with a neurologist involving iodine and cornstarch applied to my feet. Despite discovering tachycardia, high cortisol levels, along with deficiencies in vitamin D and iron (which I’ve always struggled with), most results came back normal.

While the lab work didn’t show a single smoking gun, the overall pattern clearly supported the diagnosis of systemic dysregulation, especially involving the autonomic nervous system, HPA axis, and possibly mitochondrial function. Each specialist saw only their part, but not how those systems were failing to communicate.

Our healthcare system excels at emergency care. Because if you can find the wound, usually you can treat it. But what happens when the damage is systemic, doesn’t follow a predictable path, and looks different in every body?

“It’s just anxiety,” one doctor said when I returned to the hospital after days of struggling to swallow and experiencing what I later came to learn was derealization (a common Long COVID symptom). When I insisted it was physiological, not psychological, he took my belongings, led me into a small room, and left me alone there for six hours while I stared at my hands and listened to people screaming outside and police de-escalating violent attacks. At the end of it all, he sent me home with a prescription for Seroquel, which I tossed in the recycling bin. I was in and out of the hospital for weeks after that.

Doctors rely on single appointments, single sets of vitals. But Long COVID is a disease of patterns. What they see in a 15-minute visit doesn’t capture the reality of an illness that fluctuates daily, cycles in waves, and rewires the body in ways they don’t yet understand. I’m lucky I’m a journalist. I have a background in research, data tracking, and finding patterns where others may miss them. I track my symptoms because when your body is a mystery, data is the only proof you have and, sometimes, the only thing healthcare practitioners will listen to. The burden of management and advocacy is often placed in the hands of the patient.

Across the country, Long COVID patients were cycling through the same revolving doors of the medical system — emergency rooms, specialists, referrals, shrugs. Long COVID has more than 200 symptoms, and statistically, it affects women more often than men. For many of us, the experience is similar: abnormal test results dismissed as insignificant, debilitating symptoms reduced to stress, and prescriptions for antidepressants handed out like consolation prizes.

Family members told me Long COVID didn’t exist. Some of my friends minimized my experience, saying, “It could always be worse.” Others didn’t say anything at all — just looked at me with a blank expression. Most people don’t know what to say. They nod vaguely. Change the subject. Keep moving, because the idea that a virus could do this, could unravel a body so completely and so unpredictably, is something easier not to think about.

But this kind of response, even when it comes from a good place, doesn’t land the way people think it does. Comparing suffering doesn’t make pain smaller. It just makes it lonelier. It’s a form of ableism, whether people realize it or not, a way of deciding which stories of illness count, and which ones don’t. But there’s no prize for having it the worst. No gold star for silence or survival. Just different versions of hard, and all of them deserve to be taken seriously.

Despite Long COVID affecting 17.2% of Canadians who have had COVID (about 1 in 9), research remains underfunded, and treatments remain nonexistent (sort of). Instead, we are told to "pace ourselves," to "wait it out," to "stay positive." Meanwhile, some of us can no longer work. Some of us can no longer leave our homes. Some of us are impossibly isolated and deteriorating while the world pretends the crisis is over.

When I finally got into Providence Healthcare's Post-COVID Recovery Clinic, a nurse told me that my nervous system was in a constant state of fight-or-flight. She explained that my autonomic nervous system — the system that regulates involuntary functions like heart rate, blood pressure, circulation, digestion, and temperature — was no longer working properly.

She called it Dysautonomia.

At times, I thought I was dying. I wasn’t, but what was happening was my body was forgetting how to be alive. The body is supposed to know what to do — to beat, to breathe, to circulate, to rest. But mine had lost its rhythm.

This, she explained, was closely tied to dysfunction in the hypothalamic-pituitary-adrenal (HPA) axis, which controls stress responses and energy regulation. In healthy people, it turns on when needed and shuts off when the threat is gone. In me and others like me, it was stuck. She also mentioned growing evidence of mitochondrial dysfunction, how the tiny powerhouses of my cells were failing to produce energy efficiently.

She also brought up oxygen flow. The brain consumes 20% of the body’s oxygen supply, and even a brief disruption, whether from blood pooling in the lower body, microclots blocking circulation, or damaged endothelial cells failing to regulate vascular tone, can trigger a shutdown.

When standing, gravity pulls blood downward, but in dysautonomia, the autonomic nervous system fails to properly constrict blood vessels to push it back up. The result is a slow suffocation at the cellular level. The heart, sensing the drop, speeds up in a frantic attempt to compensate, but without enough volume returning, each beat delivers diminishing returns. Pre-syncope, the warning stage before full unconsciousness, sets in. Blurred vision. Muffled sound. Heavy limbs. The creeping loss of proprioception as the body loses track of itself in space.

“It’s like running a marathon every day,” she said.

The nurse explained that the problem wasn’t just in my head — it was in my cells. “There’s growing evidence of mitochondrial dysfunction,” she said. “We don’t fully understand it yet, but we know something’s going on.”

While those words provided hope, I couldn't shake the lingering sense that our overburdened healthcare system had been too slow to grasp the situation, leaving insufficient support for those of us afflicted. The thought of those slipping through the cracks continually weighed heavily on my mind.

The chronic illness community is frequently disregarded, and our society remains deeply ableist. Governments barely acknowledge the escalating crisis. People push through school, work, and social events because they have no other choice. The truth is that any of us can become disabled at any moment in time. And yet, we rarely think about it until it happens to us or someone we love.

Post-viral illnesses aren’t new either. After the 1918 flu pandemic, survivors reported lingering fatigue, brain fog, and muscle weakness. SARS, MERS, and Epstein-Barr have left similar wreckage in their wake. For decades, patients with post-viral syndromes like myalgic encephalomyelitis (ME/CFS) have been dismissed, told to push through, to move on.

We need more than vague reassurances and scattered rehab programs. We need a national strategy because Canada has no standardized care pathway for Long COVID, no federal mandate to ensure consistent clinical training, and no dedicated infrastructure for long-term disability support. The few funding announcements — like the $20 million research network and the $9 million for guidelines — are a start, but they don’t address the realities patients live with now.

Numbers and funding reports don’t tell the whole story. They don’t show what it feels like to live inside this — to try and build a life around an illness no one believes, to watch the world move on while you’re still fighting to be seen.

We need doctors who are trained to recognize systemic illness. We need provincial healthcare systems that acknowledge disability, fund rehabilitation, and stop placing the burden of case management on patients who can barely get out of bed. This will require doctors who understand nuance, health systems that support complexity, and policymakers willing to fund long-term care that doesn’t rely on self-advocacy just to be believed.

I’m considered one of the “higher-functioning” cases. But I often think about those who can’t leave their beds, those who’ve disappeared from view entirely, whose suffering remains invisible. Those who pushed to keep up with the pace of the world only to backslide into something worse.

Two years in, I am better, but not well.

I still struggle with debilitating insomnia that can stretch for days. I still cannot exercise, something that brings me immense grief. If I push too hard, I crash. If I try to engage in university life or work on a journalism assignment, I have to weigh whether the post-exertional malaise will take me out for the next few days. My heart rate is erratic. My blood pressure fluctuates. I can’t regulate my temperature. My limbs go weak. My vision blurs. I wake gasping. My nervous system jolts with adrenaline for no reason. I experience episodes where I lose orientation, lightheaded, disconnected, close to collapse, as if my body can’t hold itself up in space. I am always bracing.

I never expected this to happen to me because our culture doesn’t teach us how to imagine disabled futures with dignity or support, but I hope by sharing my story, someone else feels less alone, less ashamed, that it opens a door, that it makes space for a different kind of future.

As for me, this summer, I’m stepping away. I’ve taken a leave from school, from work, from deadlines, from the pace of a world that rarely slows down. I’ll be spending my days beside rivers and in my garden, listening to birdsong instead of alarms, trading performance for presence. I don’t have EI or family money to fall back on, just a bit of savings from working too much this past year, and a credit card to catch my fall. Most of us don’t have the support we need to rest. But I know this is something I have to do. I don’t know when I’ll get another chance to have this kind of space, this rare window to focus, fully, on recovery.

Most clinical approaches to post-viral illness now recognize that radical rest is a foundational component. For people with dysautonomia, HPA axis dysfunction, or mitochondrial issues, healing depends on reducing the body’s allostatic load. Recovery doesn’t happen in a state of alarm. I’m choosing what the system won’t give me: time. Stillness. A chance to let my body relearn. There’s no map for where I’m going. No clear markers of progress. I don’t know what happens next.

Until next time,

Kay