Four hundred million people affected globally. Over 200 documented symptoms. No approved cure. Widespread ignorance, even among medical practitioners. Millions unable to work and provide for themselves. Negligible medical, monetary and social support. An estimated annual economic impact of $1 trillion. On the fifth anniversary of the COVID-19 pandemic, this is the grim reality of Long Covid (LC), a complex, disabling, chronic illness, afflicting 10–30% of Covid-infected people.
March 15 is now observed as International Long Covid Awareness Day – to increase recognition, public education, advocacy and attention to the plight of those suffering.
Though most people speak of the pandemic in the past tense, COVID-19 is still killing thousands every month, while continuing to affect many with LC. The policy shift from ‘eradicating the virus’ to ‘living with Covid’ has been flawed, as it doesn’t focus on prevention and protection of the vulnerable but on normalising illness.
It’s called LC for a reason, but no one imagined it would last so long – five years now for first-wavers infected in March 2020. While advances have been made in understanding LC’s pathophysiology and in providing patients with some symptomatic relief, cures remain elusive. Misdiagnosis, medical gaslighting and mistreatment of patients are prevalent, often resulting in irreversible health damage. Had post-viral illnesses like Myalgic Encephalomyelitis (ME/Chronic Fatigue Syndrome) not been neglected, underfunded and invisibilised, LC may not have been this medical conundrum.
Vaccines have saved millions of lives, but also caused ‘post-vaccination syndrome’ in some, with chronic symptoms similar to LC. Although both conditions are seriously life-altering, they shouldn’t be equated but equitably addressed.
I got Covid in April 2021, during India’s lethal delta wave, while at home. I didn’t die from Covid; I didn’t recover either. My symptoms morphed into an indescribable, agonising, unrelenting nightmare that baffled not only me but all the doctors I saw. I didn’t know such torment, exhaustion and complications could exist in the human body, that too simultaneously, with no medicinal mitigation. For three years, I spent most of my day in bed, an unbudging boulder of pain lodged over my entire being, every moment monopolised by a driven-over-by-a-road-roller feeling. Speaking and breathing, taken for granted, became a struggle.
A tri-colour ribbon designed for Long Covid awareness. Grey represents loss and grief, black stands for loneliness and isolation, and teal signifies hope and support.
When your body charges its ‘battery’ only partially, every iota of energy has to be allocated cautiously, each action deliberated ponderously. The slightest overexertion fuels a flare of symptoms, leaving you totally depleted, for days or weeks. Known as ‘post-exertional malaise (PEM), this is among the most debilitating components of LC and ME. In the best article on PEM, Ed Yong says, “Most people never see such damage because PEM hides those in the midst of it from public view.” And that’s the reality – people with LC and ME are mostly invisible. The majority suffer in silence, slowly fading from life with no one noticing. The ME campaign’s slogan, Millions Missing, encapsulates this bitter truth. In many countries, invisibilisation is by design – in the absence of data, we’re not even a statistic; they’d rather pretend we didn’t exist.
Physical distress is only one side of the complex-illness coin. The other is the emotional-financial dimension dominated by the disbelief-drenched grief of loss: of former lives, work, income, independence and relationships. Without support mechanisms, many are being forced into poverty and homelessness. Furthermore, stigma and gender bias create additional hurdles for patients.
Living with chronic illness is tough. But navigating a complex, novel illness is exceedingly arduous, more so for children. We had questions, doctors had no answers; we needed relief, medicine offered none. So, despite our multi-symptom-wrought, energy-limiting condition, we had to research, find remedies, advocate for ourselves, and seek other long-haulers online. We built community, discovered support groups and safe spaces to discuss perplexing symptoms, found validation, and received invaluable guidance, including from people with ME – for which we’ll be eternally grateful; without which we wouldn’t have survived. I can’t imagine the daunting isolation of confronting unknown illnesses in pre-internet, pre-social media times.
Complex chronic illness brings misery but invaluable lessons too. It unveils relationships, sifting the genuine from the superficial. It exposes society’s systemic ableism, even among the ostensibly progressive. It reveals how conditioned the world is by ableist norms, how difficult life is when you don’t fit them; how we continually fail persons with disabilities. It’s about being condemned for your inability to meet people’s expectations of ‘abled normality’; being abandoned by colleagues because you no longer hold utility for them. But it’s also about being embraced by strangers with the same illness, in a unique intimacy, which helps us traverse this ordeal.
Severe chronic illness is about living in limbo. It’s a slippery space between recovery and death, biology and biomarkers, free will and helplessness; between irony and paradox. It robs you of spontaneity but also of the ability to plan. It makes you simultaneously long for life’s miracles and death’s release. Survival necessitates a regular recalibration of life, a radical redrawing of boundaries of freedom and endurance, and the constant reimagination of dreams.
Complex illness magnifies mortality; it melts and freezes time. Despite its all-consumingness, it makes us realise we’re more than our bodies, greater than our illness. It’s a state of life in which the ‘pause’ button is pressed more than ‘play’. Where you feel like unclaimed luggage on an airport conveyor belt, revolving in a tedious time-loop, longing to be back in the world. And while some long-haulers are seeing slow progress, others find their condition plateauing or deteriorating; tragically, many have died.
We thought this pandemic would make the world more sensitive, empathetic, compassionate. We hoped governments would prioritise public health and create stronger social safety nets for the vulnerable, that employers would care about employees with work-impeding illnesses and disabilities, that states would unite to develop better pandemic-preparedness measures. Alas, how wrong we were. Instead of imbibing the intended lessons, society has developed a perilous amnesia and, what I call, a trend of ostrichisation, with potentially grave consequences.
Covid became capitalism’s great disruption, so they propagated the myth of its ‘mildness’ while trying to suppress science and dismiss data. Masks – the simplest life-savers – became the surveillance state’s biggest barrier, so they ostracised them. They minimised LC and victimised patients, as we’re the counter evidence to their falsehoods.
Five years later, we’re still witnessing misinformation masquerading as health messaging and personal pleasure being prioritised over public safety. Denialism has defeated decency and the dogma of ‘you do for yourself’ seems to override the ethos of human interconnectedness.
But the medically vulnerable and disabled will speak up, as much as we can, for justice and equality, increased public health investments, and better healthcare. Not only for ourselves but for all. Because everyone is potentially just one infection, one illness, one accident away from disability. We refuse to allow the loss of human life to be condoned by the term ‘underlying comorbidity’ and the death of immunocompromised/vulnerable people as the ‘collateral damage’ of society’s ‘normality’. All lives matter; it’s our collective responsibility to protect them.
What would be the ‘escape velocity’ required to turn this tide? Recognising invisible illnesses. Believing patients. Funding patient-involved biomedical research. Expediting clinical trials. Studying post-infection illnesses, including in medical schools. Expanding health-insurance coverage. Providing disability benefits, including for episodic/dynamic/invisible disabilities. Ensuring employer and state assistance. Improving public health awareness. Enhancing data collection. Installing clean-air filtration systems. Mandating masks in healthcare/public settings. Increasing medical accountability. Restoring the Hippocratic Oath. Reintegrating survivors in schools/work places with flexible allowances. Ending ableism.
We need support, not sympathy; therapeutics not therapy; cures not contempt; love not betrayal.
In these uncertain, unpredictable times, embracing hope is our best option. Despite the despair, we tenaciously cling to the faith of a gentler tomorrow. We light candles for everyone with chronic illness and disability. We hope the world stops ignoring us. We hope medical breakthroughs bring durable cures. We hope everyone wakes up to public health exigencies, not just Covid, but anything the future brings. Now. Because tomorrow may be too late.
Shivani Chaudhry is a writer and advocate for human rights and all forms of justice.
