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Dispatches from the land of Long Covid

My search for a cure took me into the strange waters of wellness.

By Emily Berry

I used to have a job, but now I mainly lie on the sofa listening to guided meditations and work at toning my vagus nerve. I regularly put on the “healing” meditation of a bearded American man who has appended the Indian honorific “ji” to his Western name and speaks from what he calls “the sweet spot of the universe”. It sounds like a lovely place.

Along with the other two million people in the UK estimated to be enduring Long Covid, I have been engaged for some time in trying to recover from it. Having Long Covid feels, one supposes, like being tubercular in the 19th century – nobody knows what to do, so if someone says you should wrap yourself in a damp blanket and lie out on the balcony all night in the cold you think, what the hell, I might as well try it. Louis MacNeice was right when he wrote,“World is crazier and more of it than we think.” There are more things to try than you can possibly imagine.

The bearded healer is just one of many such people I have found myself spending extended time with over the past year and a half. For many months I couldn’t read because my head ached and my eyes burned, and I had a strange tingling at my hairline, which vibrated more vigorously when I tried to concentrate. It seemed to be trying to tell me something, like Harry Potter’s lightning scar. You’re doomed, probably.

I have always clung to books during difficult times, and I never dreamed that this solace could – when it was most needed – cease to be available. I spent a lot of time looking through illustrated books in an attempt to distract myself from the horrendous anxiety that set in once I realised I could no longer read, or indeed do any of the things I had previously done to distract myself from the horrendous anxiety that had bothered me pre-Long Covid. There is a limited number of illustrated books in my home, once you discount my partner’s ­extensive collection of fly-fishing literature. (A person can only look at so many pictures of trout, though he would disagree.)

One book that I kept returning to was an Iyengar yoga manual, which features full-page photographs of a man and woman (in my mind, a couple) posing in leotards. I liked to imagine that once I got better I was going to perfect crow pose and learn to do a headstand with the help of these reassuring advisers, who had complete faith in my recovery. My partner, observing me once again studying the pair in their confoundingly effortless positions, exclaimed: “They must be like family to you by now!”

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Over time I became less interested in my symptoms than in how to remedy them. After a few months my targeted adverts on social media had me so precisely within their crosshairs that they could have been copywritten within my own psyche.

Items that have been successfully marketed to me include a yoga mat and pillow covered in plastic spikes, supposed to induce deep relaxation; a seven-day “vagal-toning programme” (if you don’t know what the vagus nerve is and why it needs to be toned, you haven’t spent enough time in the mind-body-soul section of the internet); an online course with the Buddhist nun Pema Chödrön on how to “find peace in the bardo”; and loungewear. The mat made me itchy and I didn’t complete either course, but I did at least learn the meaning of the word “bardo”. I was living in it.

[See also: Three years on from lockdowns, I have finally tested positive for Covid]

In the early days I handpicked nettles (almost certainly pissed on by dogs) from outside the local tennis courts, and boiled them up into nettle tea (which was said to have immune-boosting properties). My immune system remained unboosted, and soon even these short walks became too much.

I started taking what is known in the Long Covid community as “The Stack”, a combination of vitamins and minerals that people were raving about on online forums. The Stack includes a form of vitamin B3: nicotinic acid, which is a vasodilator and produces a flushing effect. Blog posts assured me that the flush was “unpleasant, but harmless”. A doctor with a bright red face extolled its benefits on YouTube.

I took it for four days with no discernible flush, but on the fifth day a creeping heat rapidly enveloped me and I turned the colour of a rare steak from top to toe. The alarming hue was accompanied by an intense burning sensation and my heart started pounding so violently I thought it would break its way out through my breastbone. I looked and felt like a lobster being boiled alive.

For three months I self-administered a homespun version of the Perrin Technique, a type of lymphatic-drainage massage developed by an osteopath called Raymond Perrin, which is supposed to “drain toxins from the head”. I picked up the technique from an obscure video I found deep in the replies to a Facebook post, in which a handsome but humourless man demonstrates how to access the tricky spinal area with a sponge on a stick he said he bought at a pound shop.

The man is reprimanded in the comments below by Dr Perrin himself for giving away trade secrets without crediting their inventor, so I knew it must be legit. For the first ten days of this regime, one must pull down on the bridge of the nose with both index fingers for seven minutes to, I don’t know, open up a drainage channel? I did it anyway.

I tried journalling; I devised healing mantras; I counted the length of each breath (“one banana, two banana, three banana, four”). I tapped acupressure points in a prescribed order while affirming that “I completely love and accept myself”; I spoke directly to my immune system in the manner of a personal trainer, assuring it of its strength and vitality; I took cold showers. I ate the so-called “rainbow” (multi-coloured fruit and vegetables); I gulped down enormous tablets, which was like having to swallow a fleet of small boats every morning. I counted my f***king blessings. 

In my extensive career as a dabbler in alternative therapies – which long pre-dates my present circumstances – I still had barely wet my toe in that world’s vast waters. In Long Covid land, these waters are teeming. In Facebook groups, people list the protocols  they followed to restore their health. No-one’s Long Covid “journey” is the same. Writing in the Times about her experience, the journalist Francesca Steele estimated that she had spent £15,000 on curing the condition. You could spend a fortune trying to reach your destination, and perhaps you would – if you had a fortune.

You could buy a pain-management device such as an Arc4Health – which was originally used to treat tired racehorses. All you need to do is wear it strapped to an ankle for six weeks or so and you’ll be bounding over Becher’s Brook before you know it.

You could splash out a little more and buy a Sensate, a vibrating rubber pebble which rests on your sternum while you listen to binaural beats. You could sign up to the Curable app. You could try a “limbic retraining” programme such as the Lightning Process, which is based on the idea that in chronic illness the brain is stuck in a fight or flight pattern and needs to be grounded.

You could try acupuncture, antihistamines, ashwagandha, CBD oil, coconut water, cold water swimming, craniosacral therapy, ear massage, gong baths, gratitude practice, hip openers, humming, inner-child work, microdosing, nicotine patches, probiotics, squats, yin yoga, or a weighted blanket. Many people with chronic pain and fatigue feel, at best, frustrated by the proliferation of such approaches (at worst, gaslighted). Who wants an “alternative” treatment rather than a non-alternative one – by which I mean a “real” one?

Watch: As Westminster looks back on the government’s mismanagement of the pandemic, the New Statesman podcast team looks forward and asks: what does this mean for the Tories?

I don’t feel this way, perhaps partly because for now I am on a tourist visa in the land of chronic illness (a year or so here is nothing in the grand scheme of things). I have always preferred to take a weird herb than a drug approved by the authorities, and would much rather embark on a mysterious spiritual or psychological therapy than conventional medical treatment. I mean, apart from the prohibitive price tag, why wouldn’t you want to do a course called the Lightning Process? It has the word “lightning” in it!

I find it much more unsettling to consider that the virus may have done irreparable damage to my body, than to imagine that it might be “all in my head” and that I might not be able to meditate my way out of it. As a poet, I believe above all in the imagination. No, if only I can finally get to grips with the trauma of my ancestors, my troubles will be over. It’s just a pity that no one involved with any of these programmes seems capable of designing a website that doesn’t look like the brochure for some terrible version of heaven. A heaven with representatives with whom you can book a “discovery call”.

Even though I have so far tried only a small percentage of the available treatments, their existence has, in some way, saved my life. Their sheer abundance seems like evidence of something important – the persistence of possibility. I feel there will always be something else to try. Despite my cynicism, much of it – with an internet connection and the right Google search terms – is free. In the absence of proven results, alternative medicine falls into the category of religion – it’s all a matter of faith. Studies have shown that placebo drugs can be extraordinarily effective for all manner of ailments (sometimes in up to 60 per cent of cases), and that they can work even when participants are told they’re taking a placebo. As it happens, there are also studies showing the efficacy of prayer. This may throw into question the efficacy of studies, but I continue to believe. 

I started writing this piece 18 months ago, typing – or more often dictating – the odd sentence or paragraph into my phone, depending on the state of my head- and eye-ache. I spent most of my time horizontal, and the idea that I had ever sat up at my desk staring at a computer screen for hours on end was astonishing.

I am not very good at dictating. Tristan Tzara said: “Thought is made in the mouth.” I don’t think that can be the case for me, since my dictations were full of long, frustrated pauses and anguished “ummms”, while my thoughts – like an annoying cat who wants to go out of that door, not this one – were sitting obstinately at the portal to my fingertips, waiting to be written.

These days I’m still not 100 per cent better, but I’m getting there, wherever “there” is. Since I can’t remember what it felt like to be well, how will I know when I arrive? And how did I get here? Was it the supplements, the pharmaceuticals, the pickled cabbage, the wishful thinking? The woman who cradles my head for an hour once a month? I don’t know. You could say it was just a question of time. But what is time, really? On its own time is nothing. It has to have something in it. 

Last autumn I signed up to an online recovery programme (an affordable and aesthetically pleasing one). In the first session participants were encouraged to write a list of things that brought them joy, whether or not we could do them currently. One of mine was sitting down at my desk in the morning with a cup of tea and starting work.

Hanif Kureishi has written (via dictation), in his hospital dispatches following a fall that left him paralysed, of the dream of an incapacitated writer to become master of their own powers once again: “What I would like, what I wish for, what I dream of, is the ability to pick up a fountain pen, and make a mark on the page; to write my own name in purple ink. This is my ambition.”

I am in a very different situation to Kureishi, but I feel in deep solidarity with his ambition. A wish that might seem so small is, in fact, everything. I can now sit at my desk and type directly onto my computer, and when I am doing this – like now – I remind myself that it is, literally, a dream come true.

[See also: Who did Patrick Vallance think was looking after the nation’s children?]

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This article appears in the 07 Dec 2023 issue of the New Statesman, Christmas Special

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