In April, I was a keynote speaker at the 2024 International Forum on COVID Rehabilitation Research, presenting an N=1 case study of myself as scientific subject and object, to an audience of faculty and students in the University of Toronto Faculty of Medicine, and clinicians and patients around the world. I am cognizant always, in these spaces, that I am treated differently than other patients, because I can pass for having fully recovered cognitive function, without measurable impairment in word recall or working memory; wave credentials adjacent to and legible in the health sciences; rifle through a closet of conference attire from pre-pandemic and dress to carry a room. Different doors open, different opportunities present themselves, and I try to speak carefully about the luck and privilege that have afforded me this trajectory, while taking advantage of invitations in which patient narrative might meaningfully be shared in venues other patients might not have access to or be respected in, to keep the doors open behind me and widen them as I go. My talk pulled heavily from essays published here, so this content will not be unfamiliar to regular readers and you may wish to skip this edition, but at the request of patients who attended the conference, I am publishing my speaking notes in full, as a resource and accessibility addendum to the videos available on conference website.
I spent the first years of the pandemic trying not to die. Not in the literal sense of taking precautions against a deadly virus, although I did that too. Not in the same urgent way as an ICU patient, though I was a regular in the ER. Not in the sense of warding off suicidality, although I was, sometimes suicidal, as many patients are with no prognosis or treatment. But in the most mundane, microscopic of ways: I caught COVID in March 2020 and my body forgot how to live, not for weeks in acute infection but for years.
Supposedly innate, automatic, processes broke down under viral damage and immune system hyperbole. Everything that keeps you uncomfortably up at night debating if you should call an ambulance, all the perceptions and adaptations that let you move through the world as a functional, self-preserving body that can handle changes to your internal and external environment, went haywire. Nearly every bodily system was implicated, from the cardiovascular to the gastrointestinal to the neurological. I had almost every symptom you have read about and others you haven’t: migraines, angina, vomiting, diarrhea, hyper and hypotension, tachycardia and bradycardia, hypoxia and air hunger, allergic reactions, fainting, tremors, and constant burning fevers.
Cognitively, I was so impaired it had a secondary effect on my condition because I couldn’t manage my own care. I forgot how crosswalks worked and walked into traffic. Forgot to turn off the stove and burnt meals and grabbed pot handles with bare hands. Once I left a carton of eggs on a hot element until it smoked with a rot I couldn’t remember how to smell. I forgot my doctors’ names and my own birthday. Forgot I had a mailbox and bills, forgot how to pay them and got every utility shut off like the cascading organ failure of household management. I forgot how to chop vegetables, or follow a recipe. I forgot how to read and write. I forgot how to dress myself or fold laundry. I presented essentially, like a patient with traumatic brain injury or dementia, which makes sense knowing what we now know about the impact of covid on the brain.
I got sick before PCR tests were widely available, before patients named our illness Long COVID to underline its viral origin and undefinable end-point, to own the narrative of the disorder disordering our lives. I got sick before public health bodies acknowledged that post-viral complications were common, before we knew what to screen for or how to manage it. I was the first patient for all of my early clinicians, and everything we tried was a joint experiment I consented to out of fear that I would not recover without intervention. It is reassuring to be in this room and see how much has changed, and devastating to know long the tail is between research and clinical practice, to hear from other patients how poor the care is that they are receiving in 2024.
When I accepted the invite for this talk, I was particularly interested in two opportunities. The first was having a patient present their own case study as an expert witness and the value of patient narrative as a clinical and educational tool. Particularly for an illness that often eludes available tests and defies commonly accepted notions of viruses, illness, exercise, injury, and recovery. I’m a researcher by trade and training, though I am used to working with a much larger N than myself, and my recovery has been the most complicated research project I have ever run.
The second was the opportunity to talk about what’s changed in four years of research and clinical practice since I first got sick. How would our panelists approach a case like mine today knowing what we know now? How is the rehab field helping prevent the estimated 20-30% of infections from degrading into severe and potentially intractable chronic illness? And how do they see their roles in a medical system in which few patients have access to specialists or 1:1 care?
I’ve given our panelists a traditional written case study and latitude to ask me any questions in advance or during this session, but I want to use my time today to talk about the experiential, about what medicine and the rehab field have gotten wrong, and the critical success factors that make it possible for me to be here. I want to talk about what your patients are likely still experiencing, whether or not they have the words to explain it to you.
On paper, I didn’t meet any of the criteria of being high risk for either initial infection or complications, but in practice, now, we know that’s not true. I’ve had concussions, asthma and allergies, migraines, a history of prior post-viral illness and fainting spells, a family history of autoimmune disease, and I was quite physically active, female, and of childbearing age, putting me at higher risk of POTS and immune dysfunction. At my most severely ill, I was bedbound. Unable to eat or bathe, sit up or communicate, tolerate screens or light or sensory input, or handle tasks of daily living, even those that were medically necessary. Dr Lucia Lorenzi calls this the metaphoric and literal “dark room” of neuro-immunological illness, the most isolating experience I have ever had.
This wasn’t a singular moment of severity from which I’ve slowly recovered but rather a repeat low point triggered over and over by physical or cognitive exertion, medical tests, vaccines, viral exposure, and treatment. I might bike or swim, climb stairs, lift groceries, make breakfast, shower, listen to a podcast, call my doctor, go to the blood lab, and then, hours or days later, collapse for an afternoon or a week, or a month, or a season. The medical terms for this are post-exertional malaise or post-exertional neuro-immune exhaustion suggesting not just fatigue but a mechanistic failure of the body to effectively labour and repair, to operate under the strain of exertion without causing damage. Research suggests that repeatedly hitting your body’s threshold can cause a downward spiral, further degrading the mechanisms of repair and reducing your capacity, the opposite of heathy endurance-building, and an imperative for rest.
Patients describe it as a crash because it feels like you hit a wall, like the car that is your body exploded on impact. My acupuncturist describes it as a shortage of coolant for an overheated engine. My physiotherapist describes it as starting every day with the glass already too full. In me, and many patients, crashes feel like a combo of flu, jet lag, hangover, concussion, and the day after running a marathon. Every frailty in my body flickers like street lights before a power outage, seemingly long-dead symptoms return to haunt me like Christmas ghosts.
I call this era of my life The Fainting Season, because my body literally could not bear the gravity of the situation, couldn’t circulate blood sufficiently to keep me conscious. I fainted in COVID screening line-ups and clinic parking lots, in the heat of every shower and the head rush of putting on shoes, in elevators and change rooms and airport wheelchair line-ups, while unloading the dishwasher and in the middle of arguments.
Four years later, I still crash if I push the bounds of what my body can safely handle and don’t cushion the repercussions. I have to treat light cardio as though it was an intensive workout and I still can’t do HiiT exercise or hike uphill. But I am no longer triggering disaster at the slightest movement. I’m working full time, able to do light weightlifting, and social activities. I can exist in the world outside of the dark room, taking transit or sitting in a restaurant or going to an appointment in person, without making my condition worse.
When the pandemic hit, I was running an applied research program at Toronto Metropolitan on technology, labour, and socio-economic inclusion. Most of my work has been on public systems, services, and interventions, and my team quickly pivoted to studying covid as an occupational disease, risk of exposure by sector and demographics, and gaps in our health and social safety nets. In the early months of the pandemic, we advised the government on sectoral and occupational risk to target personal protective equipment and test distribution, and how to help the economy recover post-lockdown.
My own recovery was dependent on a pretty all-consuming investigation of my health, remaining up-to-date on a quickly moving field, and knowledge translation of my findings to my medical team, my caregivers, and policymakers. I was the best source of both data and analysis for an illness too new to have robust clinical guidelines or large longitudinal studies, and which crossed specialities indiscriminately. I had to self-refer, including researching which specialists to send myself to, and what medications to try. Most Long COVID patients are doing an enormous amount of this kind of unpaid labour to navigate systems that are not designed for their illness, to ensure that balls are not dropped, that errors are not made, and that their clinicians take their symptoms seriously.
In some ways, I was very lucky. I had a job that became fully remote and flexible, paid sick leave and consistent health insurance. A GP who studied HIV and believed in post-viral illness. Access to early data and policy discussions, enough to take the pandemic and my condition seriously. Enough background to understand a scientific paper. I lived in a big city, with specialists and long covid clinics and was educated and white enough to be believed at least some of the time. I didn’t have caregiving responsibilities and could choose to reduce my exposure to new infections when public health policy failed to protect the population.
In other ways, I was utterly failed by the medical system, as was most of my patient cohort. The only treatment and care I received that moved the dial, other than cardiology, was in private practice. Most public health system referrals were single appointment dead ends and caused more harm than good. When I nearly fainted, repeatedly, during intake at the long covid clinic, the physiatrist, who was the only doctor on staff, told me all she could do for my labile blood pressure, heart rate, and chest pain was refer me to group physio. The clinic sent me to an infectious disease specialist who said his sole job was to rule out other infections, like STIs. They sent me to a speech language pathologist who told me I would never work again and gave me a PDF handout I couldn’t read, on reducing multi-tasking to improve attention. The technician in the cardiology lab, told me I wasn’t trying hard enough not to pass out during a stress test, and when I collapsed in the lobby afterwards, told me to go home and sleep it off.
Today many long covid clinics are closed, and patients are mostly routed to group programs or back into a mainstream health system ill-made for what in my field we’d call “complex problems” and medicine might call “chronic multi-systemic illness”. But I benefited enormously from creative rehab clinicians in private practice who themselves had experienced something akin to long covid, whether other kinds of brain injury or immunological disease, who adapted what they already knew to an emerging illness and to my unique case. That included modular physical rehab that reflected that some days just sitting up in bed caused me to pass out, much less getting on a stationary bike. It also included cognitive rehab and occupational therapy that helped me adapt my work set-up and improve cognitive endurance. With rehab alone, my clinicians agree I would still be very ill. But working in tandem it helped me adapt to a highly fluctuating capacity, take advantage of other improvements, and maintain strength and mobility, so that my condition didn’t further degrade.
I have trialed, or been screened out of taking, the majority of what medication is an offer in Canada for long covid. We tried vasoconstrictors, which left me hypertensive and hysterical. We tried cholinesterase inhibitors that sunk my gastrointestinal system so deep into “rest and digest” I couldn’t keep food in my body long enough to glean nutritional value. We tried calcium channel blockers, beta blockers, leukotriene blockers, histamine blockers, prostaglandin blockers, and opioid blockers as though, if we just stoppered every malfunctioning mechanism, and shutdown the machinery overproducing illness, the underlying issues would go away. We supplemented every nutrient and mineral I was deficient in, gave me IV liquids to improve blood volume, fed me a diet so high in sodium my stomach folded over like a slug.
The one medication that helped, that I remain on, is a heart failure med that inhibits the cardiac funny current response to stress and exertion. And with that, slowly the pieces of my recovery started to come together as my body stopped operating like it was about to bleed out or go up in flames. Other supplements were helpful, notably fibrinolytics, that reduced my D-Dimer, Iron for anemia, Magnesium threonate and PEA for neuroinflammation, and probiotics for my gut, all the things my body had burned through working up an immunological sweat to try and protect me.
Resurrection was a slow cooker, not a defibrillator: the absence of disasters stacked like crossed fingers, the embedded speedometer of the threshold of too much stretching gum-thin but holding. As my brain flicker on like an unreliable subway map, I became better at managing my own care and plotting a path forward. I’m not 100% better but around Year 3, I started having longer periods of improvement and less severe crashes. For the patients that are in the room and online, it may help to hear that a year ago I had to step back from moderating this forum because I couldn’t read the agenda or tolerate watching a screen for a day, much less attend in person. That stability made it safer to try new treatments and return to light exercise, to be at events like this without putting my hard-earned progress at risk.
But people are dying still, of acute infection and post-COVID complications, and despair and suicide over lack of supports and treatment options. Media and social narratives overplay available interventions and downplay recovery timelines; and medical professions are still prescribing pretty outdated treatment or mistaking physical symptoms for the psychological. For patients without health insurance, without the ability to rest, without income for good food, recovery trajectories are much less positive than mine. As a policymaker and researcher, I know we cannot solve a problem we have mostly stopped collecting data on or that we pretend doesn’t exist. This illness so inconceivably complicated and isolating for patients, so injurious to clear thought and speech, so limiting in mobility and possibility, it is often impossible to communicate to someone outside the injured body and its intimate sick rooms. And so there is a greater burden on clinicians like yourselves to read between the lines and interpret, to be proactive so your patients don’t have to.
I want better care for myself and for everyone who is sick or will be sick and I trust you all do too, or you wouldn’t be here today taking the time to learn. I know no better way to solve a complex problem than to learn it intimately, and the systems it lives or dies in, until I can document it on the back of my eyelids, and the undersides of my sick-bed sheets, on the dark walls of the “dark room” of illness I lived in for many years. To refuse to set aside my professional skills as a researcher and storyteller at the hospital or university gates and be solely a patient. I want to turn individual experience and case studies into actionable data and a spell against forgetting as the world moves on from the pandemic. To not let this incredibly complex illness with an ever-growing and ever-desperate patient population, be simplified to the point of untruth, by decision-makers that want to pretend it is solvable with existing systems and resources and frameworks. I want all of you to have the research and clinical guidelines you need to do more than just help your patients adapt to disability.
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about fainting, water therapy, and the aesthetics and labour of illness. To support this project, share it online or subscribe.