Should we really ‘Learn to Live’ with Long Covid?

Russell T Davies seems to have a penchant for all things apocalyptic. And sometimes, it feels like I’ve woken up into his dystopian imagination. It can’t just be me feeling this way, can it? I remember what it felt like to watch Turn Left. There was a thrill in seeing Donna Noble’s universe calamitously deteriorate in front of her very eyes. But in 2020, this adrenaline-dripped nightmare of a world became a fiendish reality.


Like Donna Noble, my Christmas had been with the family, enjoying a rare getaway from the City. On New Years’ Eve, my sibling scrolled through their Twitter, casually telling me of a mysterious outbreak in Wuhan. Little did we know that the New Year would change everything. In 2019, we didn’t have a mass pandemic that would spark international lockdowns, the mass culling of animals and the deaths of almost fifteen million people. We didn’t have healthcare staff going to the hospital like it would be their last, often without any adequate form of protection. We didn’t see violent footage of mourning families around burning pyres, with a black fungus maiming its victims. We didn’t see so many businesses shut down for good, as hospitals and funeral morgues struggled to contain themselves. And we didn’t expect so many to carry on, content with this violent status quo, being infected with a virus whose long-term consequences are only now beginning to be realised.


The pandemic has been a struggle for survival. I’m thinking of all the remarkable souls who’ve needlessly had to leave this world. I’m grieving for the entire neighbourhood of Tamil elders that my family loved and knew, who lost their jobs and then their lives, as we were told to ‘live’ with the virus. Today, the BMJ estimates over two million people in the UK to have Long Covid. Thousands of NHS staff with long COVID risking losing their pay, 71,000 children in the UK are now struggling with Long Covid, with a growing number now permanently disabled.


Long COVID has meant days where I’m unable to walk, feeling confused and helpless as throbbing, disabling sensations assail my entire body. ‘Long Covid’, by its very phrase, is more than a state of medical deterioration. It is a linguistic, physiological and social identification with the virus. When people disregard COVID, they are disregarding people.


When people disregard COVID, they are disregarding people.


COVID-deniers have often used their distrust in the medical and scientific establishment to justify their stance. It is ironic that the very spread of the virus has now made others more susceptible to the life-possessing power of these very authorities. Numerous people who never took COVID seriously – friends, students and professors – have now told me to ‘see a GP’ about my disabling Long COVID symptoms. To have support at any official level requires medical documentation – a dependency on the very institutions that many COVID-deniers have long foregone. I must confess that I’m reluctant to seek medical consultation myself- why must I have to endure a profession that has a history of gaslighting and poorly serving people that I know and care about? Medical racism and saviour-complex ableism is tiring enough! There have been many saddening tales of medical professionals gaslighting and trivialising people for their Long COVID experiences. Yet few around me seem to worry, let alone know, about the long-term impact this disease could have on their own autonomy. It is an abject failure of public health awareness, which begs the question: where did it all go wrong?


Where did it all go wrong?


In the early months of the pandemic, the UK Government and its respective health agencies issued awareness adverts that emphasised washing your hands, over wearing masks. During this period, Boris Johnson, the then PM, flaunted his disregard for the Government’s own official advice by shaking hands with hospital patients. I remember wearing a mask on the Tube, only to be greeted with baffled smirks. Perhaps it was the conflicted public health messaging that helped fuel misunderstandings about COVID. If washing your hands at your own discretion was enough to prevent the spread of COVID, then was it even as bad as the flu?


Meanwhile, the WHO took over two years to admit that COVID was an airborne disease. So what happened? Policymakers and health officials should not go about tackling a novel virus by sitting and waiting it out. However, this often happened, with public health officials initially denying now established facts about COVID due to a ‘lack of evidence’. The prioritisation of evidence-based medicine over sensible precautions and proactive strategy has arguably contributed to plenty of inconsistent messaging, when research was still rolling out. Furthermore, what did they deem as ‘evidence’? As scientists awaited data from surveys and trials, the evidence of lived experience was disregarded altogether. Disabled, chronically ill and psych-incarcerated communities have long been commenting on and accurately predicting the ways in which COVID will affect people – some even calling it a ‘mass disabling event’. The authority of this lived experience, however, has often been widely ignored.


Policymakers and health officials should not go about tackling a novel virus by sitting and waiting it out.


The images of the Wuhan outbreak made it perfectly reasonable that COVID could have been airborne. However, even a few months into 2020, GPs would appear on national television and act as though hand-washing and insignificant social distancing were the causes of concern.   The medical education system and its recruitment process is perhaps also to blame here. In “How Doctors Think”, the author Jerome Groopman reflects on his own profession’s tendency to work within known frameworks and protocols, but not beyond formulaic presuppositions. The lack of intuitive wisdom here, which many an ancient grandparent may instead possess, has again thwarted any meaningful prevention of Long COVID. A medical education system that rewards textbook-learners but ignores or even penalises intuitive actors certainly does not equip them well for the novelty of a pandemic.


The media’s propensity to misreport information surrounding COVID is also problematic. Take for example, a recent study published in the BMJ which suggested that long-COVID symptoms in mild patients resolved within a year. While many experts critiqued this study for its methodology and the contradictory evidence available, it didn’t prevent newspapers from uncritically hailing it as fact.


Perhaps also the misunderstandings of Long COVID stem from misperceptions surrounding COVID (Sars-CoV-2). Many still imagine COVID to be a lung condition and not a vascular problem. However, there is now ample evidence to show that this virus can lead to vascular damage and multi-system dysfunction. It is hardly a surprise when ACE-2 receptors, associated with COVID, are situated in the lungs but also in other areas of the body such as the gut. The long-term implications of COVID, then, can be far-reaching: from heightened risks of chronic gut conditions to neurodegeneration to paralysis to damaged immune systems to rapid ageing and increased risk of cancer.


Virologists, disabled and marginalised communities have long commented on the long-term consequences a disease like COVID might have on the body. A person with HIV, for example, might take several years before the worst of its effects are known. Similarly, HPV may not be an immediate threat to the body but can cause cancer in the long-run. What’s to say, with all the testimonial and scientific evidence increasingly emerging, that COVID cannot do something similar? The short-sighted understanding that COVID doesn’t kill but is acceptably ‘mild’ has merely fuelled the rise of our Long COVID crisis.


What now?


We now face an army of viruses. As variants blend, reinfection soars and immunity declines. A GP once laconically told me that ‘diseases don’t read textbooks’. So in this uncertain time, it is imperative that we do not repeat the same mistakes of the past. As individuals, we must act more proactively in ventilating our air , maintaining precautions and testing regularly. However, we can also protect our communities and ourselves by putting pressure on our officials to test and trace more efficiently and provide more employment protections for those potentially down with COVID/Long COVID.


And if we fail this time, the dystopia will only get worse.

Featured Image Credit: Tetiana Shyshkina on Unplash