Repair-ations
There are some things that repair on their own, or with time: a heated conflict cooling off, a sprained wrist glueing itself back together with collagen, the fumes of an unrequited crush or the flush of a bad haircut. This illness is, mostly, not one of them. Left untreated, the fire spreads upwind, biological miscommunication further tangling. Much of what we call symptoms of Long COVID are actually indications of repetitive damage, the way repeat floods or unresolved conflict can destabilize the ground you walk on.
For example, migraines (both exacerbated and viral-onset) are common. A study in a Barcelona ER reported that, of 130 patients with acute COVID, 75% had headaches. Thirty-eight percent still had pain months later; half with no previous history. The mechanism is as complex, comorbid, and multi-variant as all migraines: aim at the wrong target and you risk further damage. Fever and the inflammatory cytokines of systemic infection can themselves trigger pain. SARS-CoV-2 proteins were found invading the trigeminal nerve, the main transmission path of sensory information in the facial skin, muscles, tendons, and teeth. Dysautonomia can impact central and peripheral hemodynamics in the brain and skull, itself impacted by COVID tearing through blood vessel linings.
More recent research suggests structural mimicry between the CGRP receptor and COVID. Which is to say, long after viral clearance, the body’s own immune antibody response can bind to receptors that impact cerebral and dural blood vessels, mast cells and inflammatory mediators, mis-transmitting perceptive information to the nervous system. To leave this untreated not only drives the pathophysiology into chronic ruts, but risks further complications to the cardiovascular, immune, and nervous systems, where they are most tightly and precariously twined.
I have yet to see a good study on recovery rates for Long COVID, much less an optimistic one. Most try and infer something insightful from demographic information, vaccination status, variant, or initial symptoms, and fail to find it, or equate no longer seeking medical care with recovery. The better studies look for biomarkers, but struggle to find a unified theory for an illness that can cause heterogenous changes in nearly a third of metabolites (e.g., lactic acid, ornithine, and citrulline), and both anemia and elevated iron.
David Putrino, Director of Rehabilitation Innovation at New York’s Mount Sinai Health System, says only 15-20% of his patients fully recover "for now” (barring repeat infections or other stressors); another 10% are immoveable, no matter the intervention. The data is likely worse for those who do not have access to this kind of interdisciplinary research-informed care. Statistics Canada survey data suggests recovery rates are higher in the 6-12 months, but the study doesn’t theorize why.
A study from the Université Paris Cité, found that patients with persistent lasting symptoms +24 months were more likely to report “tachycardia, bradycardia, palpitations, arrhythmia (93%), paresthesia (78%), hot flushes (76%), sweats (69%), heat/cold intolerance (65%) and photophobia/phonophobia (59%)”, classic autonomic dysfunction in which all things normally regulated by the autonomic nervous system come undone. Patients with “rapidly decreasing symptoms” mostly reported neck and back pain (65%) and diarrhea (52%)”, which would be a highly unusual symptom presentation for Long COVID on their own and indicative of a study flaw rather than a predictive category.
No large studies to date have effectively tracked intervention outcomes over time in a large sample size, including both medical and patient-led. So much of what we’re offered causes more harm than good; a product of a medical system that needs a standardized checklist of clinical guidelines and prioritizes preventing death over treating symptoms patients say are worse than dying.
I don’t think I’ll ever fully trust the medical system to catch me; to limp through the broken service design of ER triage and simply follow instructions, believing what I’m told. I have caught enough errors in a single hospital visit for a medical malpractice suit; been the only person in the room who has heard of my diagnoses. If I want to be taken seriously, I say I work in health policy or that I’m from a family of nurses. I put my research in the mouths of more believable experts, reference specialists I don’t yet have on rota to access medications my doctors have never heard of. Otherwise I’ll be four failed IV attempts in before someone believes my veins are difficult, trialing frontline meds I am contraindicated for several times over.
Lacking population data, I compare my own prior states to gauge the improvement delta and monitor for decline, the sensory information from every past attempt shimmering in the corner of my eye. Capacity (can I do X?) is a less useful metic than symptoms during or outcomes after (how much am I willing to tolerate to do X; what do I risk to achieve it?). I think about this fleetingly on every streetcar ride and hot shower, every concert and date and back-to-back meeting; the mundane achievements as inconceivable as the impressive feats.
I’m at a writing residency this week and the last time I was here, walking the same vulnerable shoreline, lifting the same suitcase up the same quarter flight of stairs, a new lover burning up my phone with distractions, I still ran fevers after every cold dip and a morning amble immobilized me for the day. Many Long COVID symptoms leave the body on edge, even if the outside seems serene, swimming like the dead but sleeping like a glitch. At worst, it felt like dropping into the most heated part of an imagined screaming match or the moment you realize you’ve made a life-changing error. Residencies are a challenge when sick, but also a boon: reducing life down to a minimum set of options for food and activities; hair feral and adornment efficient, my only obligation artistic output and the basics of communal living. The simplicity of travel without the extra challenge of movement or new horizons.
I write often about recovery wins but I am not sure I believe in it as a conceptual framework for this illness. An ankle broken and repaired is still vulnerable. A loss taken can leave the griever indefinitely tender or mistrustful. The virus damages cells that do not regenerate, inhibits others that should. I’m still learning when to let things lie, and when to chase the problem or step into after-care mode; trying to paper over looping bad memories and ill choices with fresh experiences or new ways to apologize. To stand in the same place with at least different, if not fully-resolved, symptoms and let the changes anchor me.