March 15, 2023, marked the first International Long Covid Awareness Day. Coming on the third year from the onset of the pandemic, its marking highlighted the increasing importance of a condition and a dreadful realisation- that things have not been all right for many people discharged from hospitals, sometimes after being a hair’s breadth away from death, after being declared disease-free. In a world where WHO estimates over 6.8 million people have died from Covid-19 to date, some who contracted the disease ages ago are still battling to resume their pre-Covid lives- a battle which has mostly been silent and lonely. Because in the absence of proper scientific and government investment in their suffering, they struggle even to be believed in a world that is aggressively trying to persuade them that the pandemic is over, even when their bodies say otherwise.
What is Long Covid?
The UK press release of ILCA (International Long Covid Awareness) and LCAP (Long Covid Action Project) defines Long Covid as ‘a disabling illness with a growing list of over 200 possible symptoms, affecting more than 65 million people worldwide. Sufferers of Long Covid are often significantly disabled by the condition and have a drastically reduced quality of life and are unable to do many everyday tasks that are taken for granted by able-bodied individuals.’
The beginnings of Long Covid Awareness Day
In January 2023, first-wave Long Covid patient Angela Laffin started a grassroots movement in the US to establish an awareness day to unite with support groups and Long Covid organisations internationally.
So what made people come on board to mark a special day for Long Covid?
Long Covid has not only gone on to affect 65 million people, but it has also added to post-Covid fatalities. According to the latest report from the Office for National Statistics, “Long Covid symptoms adversely affected the day-to-day activities of 1.5 million people (77% of those with self-reported long Covid), with 380,000 (19%) reporting that their ability to undertake their day-to-day activities had been ‘limited a lot’".
And those day-to-day activities involve jobs, finances, and relationships. And yet, people with the condition struggle to be acknowledged. Unique as each person’s Covid-19 diagnosis and prognosis were, what unites those suffering from Long Covid across the world are their initial struggles to make sense of what was happening to them, and then their struggles to make others see what was happening to them.
Sanjiv Patel, lecturer and academic supervisor at the University of Warwick and founder of Sanjiv Speaks, told Asian Voice, “I was one of the early victims of Covid-19 having ended up in ICU care back in April 2020. My recovery journey since then has largely been down to ‘self-management’, the NHS was stretched for obvious reasons. It affects you both physically and mentally, things that people around you can’t see. I’ve learned a lot in my journey and have tried to make sense of what I was experiencing through finding articles, research, and other global first-hand accounts for those in a similar situation to me. That gave me hope and reassurance that I wasn’t ‘imagining it’."
Not only have people been sacked indiscriminately after the pandemic from their jobs in the absence of proper accountability mechanisms, but their physical and mental conditions have also forced many victims of Long Covid away from their loved ones in the most difficult of times. Patel told us, “So much of what you experience with Long Covid is experienced ‘after' you’ve been public facing. It’s the feeling of suddenly feeling drained, feelings of depression and anxiety and brain fog, which for me and many others I have spoken with, is compounded by insomnia. Simple things my mum suggested started to make sense. ‘Ashwagandha’, turmeric, ginger and fresh lemon juice with warm water have helped me and many others I know, immensely. Vitamin D3 with Vitamin K2 and omega 3 have also become part of my daily routine. I learned that ‘progressive exercise’, something to stretch you but not too intense, works really well. For me, walking regularly, and listening to my body to build stamina without pushing my lungs over the edge works.”
What makes diagnosis even more difficult is that most Long Covid symptoms are difficult to measure, or even directly associate with Covid. With most of the public resources in the past couple of years being focused on treating Covid-19 and containing transmission, it is only now that the effects of Long Covid are beginning to be considered in all their seriousness. As Patel said, “The NHS has come a long way since then (his infection with Covid-19 in April 2020). I’ve taken part in all phases of NHS-led ‘PHOSP-Covid’ clinical research to help develop greater understanding and rehabilitation pathways. I was part of the trial for “Your Covid Recovery” which is now a great place to go to for anyone. It is now available to the general public at ‘www.yourCovidrecovery.nhs.uk’.”
