Pressing Life's 'Pause' Button More Than 'Play'

—Published by THE WIRE on 15 March 2025—

"Covid became capitalism’s great disruption, so they propagated the myth of its ‘mildness’ while trying to suppress science and dismiss data… They minimized Long Covid and victimized patients, as we’re the counter evidence to their falsehoods."

Pressing the 'Pause' Button More Than 'Play': 

Living with Long Covid 

~ Shivani Chaudhry ~

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 US$ 1 trillion. On the fifth anniversary of the Covid pandemic, this is the grim reality of Long Covid, a complex, disabling, chronic illness, afflicting 10–30% of Covid-infected people.

Annually, March 15 is observed now 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 is still killing thousands every month, while continuing to affect many with Long Covid. 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 normalizing illness.

It’s called Long Covid for a reason, but none of us imagined it would last so long—five years now for first-wavers infected in March 2020. While advances have been made in understanding Long Covid’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 invisibilized, Long Covid 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 Long Covid. Although both conditions are seriously life-altering, they shouldn’t be equated but equitably researched and 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, agonizing, 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 over three years, I spent most of my day in bed, an unbudging boulder of pain lodged over my entire being, every moment monopolized by a driven-over-by-a-road-roller feeling. Speaking and breathing, taken for granted, became a struggle. 

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 Long Covid and ME. In the best article written 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 Long Covid 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, invisibilization 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 became guinea pigs, not only for doctors to trial and repurpose drugs, but also for ourselves, experimenting with multifarious proposed ‘remedies’ in desperate anticipation that something might bring relief. We spent our savings on unpronounceable supplements and swallowed daily cocktails of pills, only to learn later—often after enduring dire consequences—that given Long Covid’s heterogeneity, what could be a panacea for someone could be pernicious for someone else.

In the blackhole of ignorance and inadequate healthcare, we built community, discovered support groups and safe spaces to discuss perplexing symptoms, found validation from co-patients, 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. But over the past year, with the cessation of funding, several solidarity platforms and online forums have dissolved, leaving many patients stranded in this desolate, perplexing, and seemingly endless void.

Tri-colour ribbon designed by survivors for Long Covid awareness. 

Grey represents loss and grief, black stands for loneliness and isolation, and teal signifies hope and support.

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 watching the drastic redesigning of life’s canvas while fervently not wanting the new paint to dry. 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 realize 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 prioritize 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 ostrichization, 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 ostracized them. They minimized Long Covid and victimized 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 prioritized 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? Recognizing 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 settings. Increasing medical accountability. Restoring the Hippocratic Oath. Reintegrating survivors in schools and 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.

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The version published in The Wire is slightly shorter than the above piece, as I had to delete a few lines to meet their word limit.

Link to the original published article: 
https://thewire.in/health/pressing-the-pause-button-more-than-play-living-with-long-covid