Care infrastructure
Five years ago, I became the kind of ill that the medical system and our social safety nets are ill-equipped to handle; that loved ones turn away from out of overwhelm or horror and doctors declare out of scope. The kind of sick that did not yet have a name or a diagnostic code or a prognosis. Since then, I’ve watched five years of patients get sick and very few of us become well again. Recovery patterns are mostly clustered not around symptoms, as studies seem to clump us, or pre-existing conditions or health anxiety levels, but around access to critical care and resources.
Most seriously ill people don’t need care in the Instagram meme sense of somatic therapy adages in childlike fonts. They need more than the twenty bucks Leah Lakshmi Piepzna-Samarasinha’s describes us collectively passing around and building movements and communities from. They need the kind of care that requires decade-long investments in the basic science of disease mechanisms and patient-centred pharmacological patent laws and regulatory regimes. The care of cardiac MRIs and infusion nurses and clinical pharmacy.
They need expensive diagnostic scans, and high-quality home monitoring equipment, and doctors willing to fill out insurance paperwork. They need the material infrastructure of advanced medicine, the social infrastructure to make it affordable, and enough income to eat nutritiously and outsource the labour of tasks of daily living they cannot manage, much of which are more specialized than our families and neighbours can volunteer to fulfil for us.
In the first lockdown, a month after I was released from the COVID ward to rot abed with nothing but an internist prescribing asthma meds over the phone, my longterm girlfriend temporarily broke up with me because she could not foresee a poly future that survived interprovincial closures and the family unit defined as a household. She could not foresee a future with me, because I was too sick to orient myself in time or plan past the next week or walk to the next room.
I survived and our relationship survived, and I spent the next year, through her wife’s cancer diagnosis and treatment, through further ruptures in our queer family and deaths in our blood families, downplaying how ill I was in order to be a contributing asset and not an additional strain. I remember only a handful of days from the first Fever Year my brain caught fire: driving to the beach with a temp and heart rate over 100; fainting in line to pick up oysters at the market for her birthday; sleeping in the basement when I visited, too sick to climb to their 2nd floor apartment. I spent much of the year pushing far past my bodily limits just to keep myself fed and bathed and housed and convince the medical system that something was Seriously Wrong.
The month her wife finished chemo, the week she was declared cancer-free, as I started to pull the curtain on how serious my condition was, she finally ended it for good. She said my sickness made her sick with self-loathing, that my immune-compromised body was a limiting factor to her hot vax summer and the necessary self-care of risk-taking after wrecking herself in service to others. I’ve grieved many things from that year but most of all the austerity we all lived under. We needed far more material, real-world caregiving infrastructure than pandemic restrictions allowed or were available in the first years of the pandemic, in order to take better care of ourselves and each other.
To quote myself, Long COVID is a complex multi-systemic pathophysiology in which the patient’s health can further degrade without medical intervention. Early treatment might have saved me years of decline and near-death, the rupture under pressure of many of my close relationships, the derailment of my career, and a truly astounding cost to the public health care system in ER visits.
In my experience as both patient and researcher, diagnosis of Long COVID’s multitude of sub-diagnoses and contributing mechanisms (cardiovascular damage, migraines, POTS, MCAS, immune complications) is rarely proactively offered and almost never proactively treated without patient self-advocacy. Clinics, most long-shuttered, focused on symptom management and patient education. To date, I am not on a single medication I did not personally research and request, often tracking down an amenable prescribing doctor or jumping insurance hoops or convincing the on-staff clinical pharmacist to make me an N=1 experiment. Me and my two arts degrees have a batting average higher than most medical professionals.
In the past year, new additions to my bespoke treatment plan have transformed my entire life, a suite new meds offsetting un-mendable damage or adjusting critical internal dials my body still cannot maintain at homeostasis. I have arrived again fully in the waking world, not merely a temporary visitor, able to spend whole days out of the house exercising or just existing in community, and to keep my symptoms to a dull rumbling manageable out of the hospital. Well enough to piece together some of the memory gaps from the lost years, to begin the labour of putting a life back together and publish research on the care infrastructure gaps, even if I cannot resurrect my personal losses. None of this was achievable through the Long COVID programs offered in the hospitals in my city and the clinicians on staff or the community around me, no matter how thin we stretched ourselves across the infrastructure gaps in our systems.
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 the aesthetics and labour of illness, the science of salt, and the failures of public health. To support this project, share it online or subscribe. The series is intentionally not behind a paywall, to ensure broad access to patients and timely circulation of information in our evolving public health crisis, but paid subscriptions are welcome