by Jon Bigger
31st October 2024
There is a spectre haunting the world. The spectre of Covid 19. The ongoing pandemic barely gets discussed in detail anymore because we’re all fed up of it and we want to move on. I am really fed up with it. I first got Covid in May 2020, when the UK was in the first of its lockdowns. In October 2022 I got Covid for the second time and never fully recovered. (Not yet, anyway. I still have hope.)
My chapter in the newly published book Fight for a New Normal? (published by Freedom Press in October 2024) draws on my writings during the various peaks of the pandemic crisis, detailing the government’s haphazard response (March 2020) and the Tories much hailed ‘Freedom Day’ (July 2021), and follows that trajectory into our ‘new normal’. It might be the case that society is trying to move on, but this book is timely – new variants of Covid 19 keep emerging and, belatedly, ‘long Covid’ is starting to get more coverage in the mainstream.
Long Covid is a strange thing to define, partly because people report different symptoms. I’ve seen people describe it as continually getting re-infected with Covid. I’ve seen people just compare it to ME (myalgic encephalomyelitis) or chronic fatigue syndrome. I’ve seen people talk about their breathing becoming difficult. People have also reported dizziness, inflammation, aches and pains, rashes, itches and brain fog. People have questioned links with cancer, diabetes and heart disease. People with long Covid tend not to report all the symptoms; everyone seems to have an individual cocktail from the list. My own long Covid over the last two years has meant reduced capacity for exercise, long periods of exhaustion, brain fog, and feelings of isolation with the odd dark thought jumping in (because they’re bound to). Considering that the chances of getting long Covid increase dramatically in people who have had Covid 19 more than once, we can expect an increase in such cases. It’s not going away – the issue is only going to get more serious.
My suspicion is that long Covid isn’t one condition, it is many. I’m not medically trained, but I would not be surprised if we need to find multiple solutions to the problems of all those symptoms. We might need to do that quickly, too. In March 2023 the Office of National Statistics in the UK estimated that 1.9 million people were reporting symptoms of long Covid. That was the last time they collated such data for the UK. However, a report was published covering England and Scotland earlier this year which put the figure of people suffering the condition in those countries at 2 million. An article in Nature from June 2023 estimates that worldwide cases of long Covid stand at 65 million and they are rising daily. Not only are you more likely to develop long Covid with multiple infections of the virus but long Covid is likely to worsen in those reinfected with Covid 19.
That wasn’t the case for me when I got reinfected on New Year’s Day 2024. The Covid itself was mild, except for a never to be forgotten bout of vertigo that left the world spinning out of control for days. By that time, I had completed my long Covid rehab meaning that I’d built up some better physical strength. Rehab consisted of two trips to the hospital each week for a basic workout. Six weeks later we were told that we had to carry on ourselves. Looking back, six weeks seems incredibly short. There were around 40 people at rehab from a range of age groups. When I started, I could only walk five minutes each day. It was a physical struggle to get to the hospital by public transport. By the end, I was walking to the hospital and only getting the bus back, such was the improvement. I can now walk for over an hour.
The physical improvement didn’t mean an end to brain fog, however. I’m not sure how to describe it. At its worst, I found it hard to write and speak. I still do for long periods. I knew what I wanted to say, but the structure of one sentence leading to another and so on was really difficult. It affected everything. I stopped posting on social media because whenever I started something, I would just stare at it wondering what it meant and how I could get my thoughts onto the screen. This contributed to the isolation. I also had to cut down how much work I did. I’m a self-employed tutor, so I can do that, but it has a devastating impact on being able to pay the rent. All of this has a terrible impact on relationships and mental health.
I’m told by my local health professionals that long Covid clinics are being closed down around the country. Mine still operates and the waiting lists for help are incredibly long. One person at the rehab I attended had waited over a year to get on the programme. I’m waiting for an assessment on my breathing. It’s annoying to find that you’ve forgotten to breathe in every now and then! I think this issue might be the final piece of the jigsaw for me and every day I await a letter giving me an appointment. 10 months and counting …
Ultimately, I’m just one person navigating through this. As I noted above, something like 2 million people in the UK are doing the same. Isn’t that interesting? Some among that number have had long Covid since 2020. The number rises as infections continue to pile up. Imagine: 2 million people reducing the hours they work or losing their jobs; 2 million people struggling to pay rent or their mortgage; 2 million people feeling isolated or having trouble maintaining normal family ties; 2 million people needing counselling; 2 million people needing welfare. It’s 2 million people and counting. This is a proverbial ticking time bomb, but it’s only people with long Covid that are even talking about it.
We are being haunted.
Numerous chapters in the Fight for a New Normal? book rightly celebrate the Covid 19 mutual aid groups that appeared in Spring 2020. But there are no long Covid mutual aid groups because we’re all too exhausted. If we can’t help ourselves, where does outside help come from? Some chapters in the book detail the (inevitable?) decline of mutual aid organising as the immediate pandemic crisis recedes (Chapter 4 by Cristopher Morales) or the difficulties of maintaining the anarchist ethos of mutual aid (Chapter 1 by Aidan and Sam). What can those experiences tell us about mutual aid in the context of long Covid?
In the UK, the state is not taking the prospect of long Covid seriously – Starmer’s new Labour government has thus far failed to make it a priority. Vaccines are routinely available only for the elderly and those deemed most at risk. Children and most adults do not get a jab, and, as a result, most people can expect to get Covid 19 every one to three years. The number of people suffering with long Covid symptoms will rise.
Instead, the government has begun a renewed crackdown on benefit payments (which tells you so much about those now in power). They are determined to get people back to work, with the same bloody-minded obsession of the ousted Tory government. So we have rising numbers of people unable to work, accompanied by the state insisting that they should be working. That’s the new reality. We can’t allow it to the be the new normal.
So what does mutual aid look like in this context? To start with, we can think about long Covid in combination with existing networks and struggles: long Covid is a disability; you are more likely get Covid 19 (and thus long Covid) if you are working class, or from a black or minority ethnic background. If there is any chance for long Covid to bring a renewal in organising, as we saw with the first waves of Covid 19, then we should seek to include those affected into the structures of solidarity and mutual aid that already exist.
Fight for a New Normal? Anarchism and mutual aid in the Covid-19 pandemic crisis is edited by Jim Donaghey and published by Freedom Press in October 2024. Check it out here: https://freedompress.org.uk/product/fight-for-a-new-normal/