Responsible Monster

Despite research and advocacy, the medical and social paradigm for Long COVID remains patient responsibility. You miscalculated risks, breathed crowded air that public health policy left unventilated, mounted an insufficient immune response or fought too hard, under-prepared or over-researched and scared yourself sick, returned to exercise too soon or too late, ate the wrong things or not the right things, moved far from family or didn’t find a partner to commit to you in sickness and health.

The system needs a blame vessel, a headline to fleece the world’s unease, a rationale to reopen the public realm. You are the problem and solution. You were lazy, deserving, unmotivated, anxious, cursed, or otherwise predisposed to disaster; the exception to the impervious body politic. You stressed yourself into severe, irreversible illness with the power of your own weak mind. 

Responsibilization, writes O’Malley (2009), is “the process whereby subjects are rendered individually responsible for a task which previously would have been the duty of another – usually a state agency – or would not have been recognized as a responsibility at all.” Subjects make “decisions about their self-conduct surrounded by a web of vocabularies, injunctions, promises, dire warnings and threats of intervention, organized increasingly around a proliferation of norms and normativities” (Miller and Rose 2008).

In social service models of governmentality, users take on “risks that they have not been able to govern themselves” and their irresponsibility is contagious, “caus(ing) problems and danger for other citizens” (Juhila and Raitakari, 2019). In the legal world, a “demand letter” warns the recipient to “govern yourself accordingly.” In medicine, patients who refuse recommended treatment are “non-compliant.” In Long COVID, it’s used to explain why at least 1 in 9 patients fail to recover after infection and half of those still sick have not improved, to justify triage models where only the most severe are treated.

The responsibilization of patients occurs in Long COVID clinics offering rehab and diet tips; studies on mindset, psychological causes, and weight loss; disjointed care models requiring active patient coordination across practitioners; biometric trackers for self-monitoring and remote observation; self-managed non-pharmacological interventions patients need to trial before meds; and the necessity of patient-led research funding questions doctors do not want to ask. In the latest StatsCan survey, only 3.1% of acute infections were prescribed medication. 40% of those with seeking treatment for long-term symptoms reported access difficulties including referrals, waitlists, and scheduling; only 1 in 8 said they received adequate care.

The Saskatchewan Public Health’s Guide to Long COVID Self-Management reads: “After spending time recovering, your body may have become deconditioned. This means that you are weaker, your body is less flexible and you have less muscle because of all the time spent being sick in bed or resting. A person becomes more tired and less motivated to work on regaining their strength. All of this can affect your mood. Some people are afraid to become active again. Others feel helpless or hopeless.”

In this model, inactivity is riskier than action and a few weeks of rest can undo a lifetime of exercise and muscle mass, rewiring your brain to believe you are too sick to safely exert yourself and incapable of recovery. It is your responsibility to overcome this, not the health system’s to treat the pathophysiological causes of the illness that bedded you. In the months after our breakup, my girlfriend’s wife will tell me to stop thrashing, stop fighting the inevitable end and making myself sicker. Bedridden, I develop a tremor akin to akathisia, psychomotor restlessness ironically named from the Greek akathemi, meaning “never sit down.”

Patient responsibilization is a product of 2020 restrictions, in which patients quarantined and most outpatient treatment was remote. It’s produced by health system exhaustion, patients filling gaps between research, clinical guidelines, and insurance. It flourishes in outdated disease models of psychosomatic and ‘functional’ neurology. Illnesses like fibromyalgia are still sometimes described as the physical manifestation of emotional trauma binding the body in pain, despite studies showing high rates near water reservoirs contaminated with intestinal parasites, alterations in bile-metabolizing bacteria, and links between chronic pain and viral triggers impacting tryptophan catabolism

Medicine has historically failed to fund and treat post-viral/bacterial and neuro-immunological disease, writing off whole hospitals and towns afflicted as mass hysteria and punting responsibility to psychiatry or back to patients. UK psychiatrists with ties to the insurance industry, and an influential $5 million dollar trial of graded exercise and cognitive behavioural therapy, set back global research and treatment by decades. Though since disproven and removed from clinical guidelines, this framework lives on, resurfacing under new names. Even asthma and hay fever were once considered anxious illnesses of “the psyche”, treatable with phenobarbital, stimulants, and herbal inhalants.

The responsibilization of patients also thrives in wellness culture, where, as Dan Rather said on 60 Minutes: “Wellness is really the ultimate in something called self-care, in which patients are taught to diagnose common illnesses and, where possible, to treat themselves.” In dissecting this clip on the podcast Maintenance Phase, Michael Hobbes and Aubrey Gordon note how quickly we get from “lifestyle affects health” to “your lifestyle is the only thing that affects your risk for disease (and) everybody who's sick must have done something to deserve it.”

The history of viruses is lush with blame for patient behaviour and metaphors for punishment. Rebecca Makkai writes in The Great Believers, in the voice of gay men in the 80s: “This disease has magnified all our mistakes. Some stupid thing you did when you were nineteen, the one time you weren't careful. And it turns out that was the most important day of your life.” 

In gay incompetence memes, pre-illness I broke the tropes: I could drive, do math, cook, eat dairy, hold a job, and top a lover. My girlfriend joked I was the sanest and most capable of her friends and lovers. It is true I was the least medicated and the most independent, the one with a driver’s license and no fear of night driving, public speaking, or talking to strangers. Our arrangement relied on me living autonomously: separate houses, finances, health insurance, holidays, nothing that could bind us numerically or counter-weight sudden deletion.

“Memory makes me flawed in remembering”,  writes Camoghne Felix in her heartbreak memoir Dyscalculia, “but this I can tell without mirage, without the phantasmagoria of misery…..What two lovers do in the room of that third world is the math of it all. I loved him, and it gave me a fever.” In illness, I am not any kind of woman or monster. I am a fire hazard, a perpetual fever, both in and made of danger. In the months after our breakup, she’ll tell me she does not care if I live or die: she cannot bear responsibility of loving someone at heightened risk. As she leaves on vacation with her wife, I call an ambulance again for my Schrodinger's heart, symptoms always either innocuous or deadly, letting the medical system take responsibility for my survival the only way it knows how.

In the 15th month of illness, I start reteaching my broken brain how to drive, joking that at least I will faint in new, scenic locations. I am convinced no one else should be in the car for fear I will injure or infect them so I do this alone. I’ve been driving since I was 15, in four provinces’ weather and road rules, but nothing makes sense now but muscle memory. I cannot process sensory input fast enough to change lanes on the highway I didn’t intend to merge onto. By the time Google Maps finishes instructing me, I’ve forgotten the beginning of the sentence. Driving is an unfamiliar video game and my brain cannot autosave. I forget what the letters stand for on the gearshift and drive the wrong way up a streetcar-only road. I abandon buying gas because I cannot remember my PIN. I lose my keys in the car and drive home pressing the ignition with my finger like magic. Switching makes dumbfounds me and I spend hours searching Youtube for the mechanism to wing the machine’s lashes in a storm or pin it safely on an incline.

Last year, the Chief Psychiatrist and VP of Education of Sunnybrook Hospital published an op-ed arguing for a rebrand of the term ‘psychosomatic’ so that patients will accept the diagnosis. He said that Long COVID symptoms were due to changes to the “software” or circuits, not the “hardware” of the brain, induced by frightening media priming people to expect complications and “amplified by social contagion.” It’s a poor medical metaphor and an astounding claim in the face of hundreds of studies on brain damage: grey matter reduction, tissue damage, blood-brain barrier impairment, and inflammatory markers in cerebrospinal fluid. Newborns exposed in utero show developmental delays, young adults have sudden onset psychosis, and seniors show exacerbated dementia. Magnetoencephalography scans of my own brain show unusual wave activity that doesn’t map onto PTSD or psychosis models and markers akin to traumatic brain injury.

To avoid misdiagnosis, I calmly explain to my doctors that chest pain (the most common cardiac symptom post-covid) wakes me from calm sleep, that my blood pressure hits 180/140 while calmly baking a comforting recipe or after a relaxing bath. I lie and say I am not reading medical journals, side effects, or the constant stream of social media posts from terrified people querying the internet about the probable trajectory of our collective punishment. I say I am optimistic I will recover.

In reality, I am wracked with unreasonable fears, brain racing to find a cause for my physiological distress. I can’t reason, hold facts and thread them into logic, anchor new memories in the eroded topsoil of my mind, or retain yesterday’s conclusions to counter today’s terror. Patricia Lockwood, in possibly the first major personal essay on cognitive impairment in Long COVID, writes:  “My mind had moved a few inches to the left of its usual place, and I developed what I realised later were actual paranoid delusions. ‘The love of my life is now my enemy,’ I thought to myself, crawling out of the bedroom on hands and knees to take one million mg of Vitamin C, because what the hell else was I supposed to do – apply leeches?” 

Unclear what day or year it is, I wake from nightmares that feel more real than morning, and obsess over every decision that led to this immurement. I involuntarily replay the same dead-end conversations, burning tracks through neurological hedge mazes. I struggle to distinguish now from never, recent memory from resurrected, how to tell time what to do in the haunted dark of my sickroom. I lose friends and loop harder because conflicts and conversations remain eternally incomplete. I am a problem I cannot solve and repetition does not equal memorization or comprehension. Camoghne Felix writes, “Sequence and process was the first sense to go. With each retell….bit by bit I could feel the glitchings start. My executive functions beginning to complicate. Memory was burning a hole through my capacities, taking up so much space, getting heavier and heavier. My brain’s ability to process taking away from its ability to compute.”

My world shrinks to my block, my apartment, my bedroom, and finally a single side of the bed I cannot roll out of. I blame myself for my decline and reduce activity down to the movement needed to keep a body alive. My once lover, my emergency contact, my character witness, the woman who called me her favourite monster, says I am too sick, too dangerous, too ungovernable, to love, and I believe her. It is the same day, the same month, the same grief rolling over me, and I can only white knuckle through it. I have few memories from this period. I sleeping beauty’d through hell and woke older and alone. I was a monster, but I didn’t harm myself or anyone else, I took responsibility for my survival when no one else would. I moved, if not on, at least in florid motion.

The Impairing Curse is a long-form, serialized experiment. 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.