An engineer’s enduring struggle with Long Covid: ‘Various organs of my body were affected at random’

‘Our leaders chose not to prepare us for post-COVID-19 complications and continue to dismiss symptoms as anxiety’

By Suhas Kashyap
Published: Thursday 27 January 2022

‘We are all living on borrowed time’ is an old proverb that reminds us of our mortality. Mortality gets all the attention of philosophers for it is a central challenge of the human condition. But what about its neglected cousin, morbidity? 

In our limited lifetime (4,000 weeks on average), what if other limitations crop up that can worsen our quality of life? 

The World Health Organization (WHO) defines health as not merely the absence of disease or infirmity, but a state of complete psychical, mental and social well-being. My question is, how well are the medical establishments following this definition of health?

My experience with Long Covid, along with that of countless others around me, showed that looking at health with this broader definition is the exception rather than the norm. 

The assumption with COVID-19 is that if one doesn’t make it to the hospital, they don’t have a severe infection. Also, when patients are discharged, they are assumed to have “recovered.” 

To this day, countless doctors are unaware of the chronic effects of COVID-19 despite it being acknowledged by WHO and Dr Antony Fauci, director of the National Institute of Allergy and Infectious Diseases and chief medical advisor to the President of the United States. 

As of today, there are over 300 million COVID-19 cases and 5 million deaths. Assuming 10 per cent people get Long Covid (lower estimate by Dr Fauci), that would mean a minimum of 30 million people living with the disabling after-effects. That is the entire population of Canada or Nepal. With Omicron spreading like wildfire, death should not be the only cause of concern. 

After I “recovered” from COVID-19, various systems of my body started getting affected seemingly at random. As if I were a puppet and the puppet master had, without my consent, handed the reins over to a petulant and whimsical kid. 

I would experience high heart rate while being seated or standing. Pray that you don’t ever feel jealous of people who are able to take sitting for granted. 

Brain fog: When I would read a sentence, it felt like the words were being juggled mid-air (in my mind) till the full stop was reached. It would take some time for my mind to make meaning out of the sentence. Reading a sentence was a Herculean task. Writing one was a moonshot project. 

While speaking, forgetting trains of thoughts mid-sentence became all too common. 

I also had mild fever and shortness of breath for months. A seminal pre-study in Lancet of around 4,000 patients spread over 50+ countries identified 205 symptoms in 10 organ systems after seven months. 

“10 to over 30 per cent people will go on to have persistence of symptoms (and) even mild cases are included in that possibility,” Dr Fauci recently said. Long-term symptoms usually include shortness of breath, fatigue, difficulty concentrating, insomnia and brain fog, he added.

A study by the All India Institute of Medical Sciences, Bhubaneswar, found one in three persons in Odisha who had tested positive for COVID-19 developed Long Covid. 

The condition can worsen the quality of life significantly. US President Joe Biden acknowledged that Long Covid can cause disability

Well-informed doctors acknowledge this, but they are more the exception than the norm. Dr David Putrino, director of Rehabilitation Innovation for the Mount Sinai Health System in New York, US, grimly described his interactions with physicians for whom anxiety is still a default explanation for long haulers’ symptoms. Long Covid denialism is rampant in medical establishments, he stressed, adding: 

Everyone should know that Long Covid is real, but a lot of people are not there yet. I am having many conversations with (doctors) from states that are now where New York was in March / April in terms of COVID-19 numbers. They’re coming to me completely fresh, completely naïve, saying symptoms of COVID-19 aren’t supposed to last this long.” 

Long Covid denialism is in parallels with HIV/AIDS denialism, where a large number of people refused to acknowledge that human immunodeficiency virus (HIV) causes acquired immune deficiency syndrome (AIDS), despite conclusive evidence. 

Symptoms can persist after other infections too: We knew about the post-Ebola syndrome, post-West Nile virus and post-Epstein Barr (mononucleosis). Around 96 per cent of Polio cases were mild but were debilitating nonetheless. 

Our leaders chose not to prepare people for the truth that one can have a severe illness even if they didn’t need hospitalisation. And with the novel coronavirus, all levels of severity, even an asymptomatic infection, can lead to chronic illness.

I was living in Sweden when the pandemic began. I contracted COVID-19 and developed Long Covid symptoms during my last two years in the country. 

Sweden had did not impose strict restrictions on wearing masks for the longest time despite death rates to the tune of 158 per 100,000 people (its neighbor Norway had 24 deaths per 100,000 people). The country also did not acknowledge Long Covid patients. 

India had 38 deaths per 100,000 population. Even if we assume the actual number was four times higher, it would still be far lower than Sweden. 

“Every virus has a post-viral syndrome,” said Dr Putrino. “In a global pandemic, we’re going to have a certain number of patients present with a post-viral syndrome, and shame on us for not being ready.”

A report in VICE magazine posed the following questions: How could top scientists and medical professionals suffer collective amnesia about this crucial piece of information? Why weren’t we warned about two types of potential COVID-19 complications, acute and chronic? 

The answer is simple: Our medical system is radically, practically and conceptually unequipped to serve patients who test negative and whose chronic symptoms cannot be explained with a biological diagnosis or outsourced to a specialist. 

If not for support groups like Body Politic, which have provided excellent assistance to patients and caregivers, people with Long Covid would have been lost.

Views expressed are the author’s own and don’t necessarily reflect those of Down To Earth.

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