On 20 March 2020, Rowan Brown started to feel a tickle at the back of her throat. Over the next few days, new symptoms began to emerge: difficulty breathing, some tiredness. By the following week, the UK had been put under lockdown in a last-minute attempt to contain the spread of SARS-CoV-2, or Covid-19. No one else she knew had yet been infected, so she posted updates on Facebook to keep people informed: “Oh, guys, it feels like a mild flu. Tonsillitis was definitely worse.”
Brown didn’t know then she was at the beginning of a condition that did not yet have a name, but which has since become known as long Covid. After two weeks, she had a Zoom with a friend, and at the end of the conversation it was as if all life force had drained out of her body. Her doctor advised her to stay in bed for two weeks. Those two weeks turned into three and a half months of extended Covid symptoms: nausea, fevers, night sweats, intense muscle and joint pain, allodynia (a heightened sensitivity to pain), hallucinations, visual disturbances. By the end of the three months, she had noted 32 different symptoms. “I didn’t recognise the way my body felt at all: my skin, my hair,” she remembers now. “It was like being taken over by a weird alien virus, which I guess is what happened.”
A busy secondary-school art teacher in Oxfordshire and mother of two, she was convinced she could defeat the virus by sheer force of will. At the time of infection, she had been doing Olympic-style weightlifting four times a week, deadlifting more than 100kg and doing CrossFit competitions. Every time she felt a little better, she tried to get up and be active. Every time, she would crash. For 18 months, she was confined to her bed with the curtains drawn. “It disrupted my autonomic system so severely, there were times when my body would forget to take a breath, and I would have to lie there and manually breathe.”
Brown never went back to work. She lost the feeling in her hands and was unable to grip a pencil or a paintbrush, losing all muscle memory. “I had to relearn how to draw again. So while you’re dealing with these physical symptoms, you’re dealing with the compounding trauma that you have lost your entire identity: your job, being a parent, being creative, being fit, being a friend – gone. All of it. I was an empty shell.”
Brown, 48, is one of 2 million people in the UK thought to be experiencing long Covid symptoms; according to a study published last summer, roughly 400 million people worldwide have been affected. Often, long Covid patients experience mild primary infections, are never admitted to hospital and only realise there is a problem later, when the symptoms persist well beyond the usual two weeks. Some make a full recovery, some see improvements over time; others, like Brown, have seen little progress since being infected five years ago.
One of the main challenges in diagnosing and treating long Covid is its unpredictability: research studies have linked it to more than 200 symptoms affecting every part of the body. Many patients go on to develop complications such as postural orthostatic tachycardia syndrome (POTS) and fibromyalgia, a chronic pain disorder; 59% of patients show signs of organ damage. Doctors are still searching for the root cause of the illness: is it microclots, cytokine storms, histamine intolerance, gut microbiomes, lingering spike protein in the brain, dysautonomia? There is still no biomarker test that confirms whether someone has long Covid or not. In the absence of concrete answers, clinics around the country are focusing on helping patients manage the condition. “There aren’t simple medicines that deal with the whole problem, but some medicines can help different parts of it,” says Dr Melissa Heightman, who leads the University College London Hospitals specialist long Covid clinic.
My own experience of long Covid began on the first day of lockdown, 26 March, when I felt the virus moving from limb to limb like a malevolent force. The air I breathed felt like it would not reach my lungs, as though I were being suffocated from the inside. The days turned into weeks; the weeks turned into months. I first wrote about the effects of the illness on my body and mind in these pages in November 2020; a month later, just as the symptoms were starting to show signs of improvement, my partner and I were reinfected following a walk in the park.
For more than three years, I struggled to breathe, work, socialise or do almost anything at all. I compiled a list of activities that flared up my symptoms: loading the dishwasher, playing Tetris, strong emotions of any kind, spicy food, watching a film, drinking alcohol, doing a crossword. The only things that helped were rest, sleep and spending a lot of time horizontal on the sofa. I found temporary relief in vagus nerve exercises, and a meditation course kept me connected to sanity by a thin, delicate thread. In something approaching a fugue state, I wrote a short, strange novel about a woman losing her mind in the Italian Alps, as I painstakingly attempted to regain mine in the 10-minute radius around our flat. Then slowly, in stops and starts, the setbacks became shorter, less intense. By summer 2023 I had started to feel something like my former self again rather than a husk. Life became a succession of firsts: the first face-to-face meeting with friends, the first meal out, the first time back in the office, the first music festival (last year’s bucolic, life-affirming Green Man).
In many ways, I was one of the lucky ones. Olympic athletes, dancers, circus performers, actors, RAF officers and more have had their lives turned upside down by the illness; many have been left unable to work. While there are certain factors that make long Covid more likely – it appears to be more prevalent in women, those with pre-existing health conditions and people facing socioeconomic deprivation – it can affect people from any background, irrespective of age or prior fitness levels. “Long Covid can happen to anyone,” says Heightman. “Often the people we see in clinic were completely well before, and now they’re really poorly. It is more common in women, but 30-40% of our patients are men.”
The sentiment is echoed by Dr Ben Sinclair, a GP who started running a private long Covid clinic after becoming seriously ill with the condition himself. “My average patient is previously very fit, very successful, and desperate to get back to normal life,” he says. “The people I’m looking at are actually incredibly motivated, the movers and shakers of society, and we lose them to our detriment.” The figure of 2 million patients, he says, is likely an underestimate. “People under-report this – probably 10% of people will go on to develop some form of post-Covid syndrome. I think we probably have a higher incidence, particularly among children, than is being currently reported.” According to the latest figures released by the Office for National Statistics, 110,000 children in the UK are living with long Covid; in the US, the figure is thought to be 5.8 million.
Avalyn Godfrey, from Cheshire, was 12 when she contracted Covid on a family holiday in October 2021. Two weeks later she went back to school after testing negative, but within a few hours she was falling asleep in class and had to call her mum Donna to pick her up. She was tested for diabetes, asthma, Addison’s disease; there were ECGs, blood tests, X-rays, ultrasounds of her heart. Everything came back clear. “It is a bit disheartening, because you know something’s wrong, but there’s no evidence,” she recalls. It took a year and a half to get a diagnosis; her dad, who also developed long Covid, was diagnosed in two weeks. “It isn’t just grownups who get it,” she says. “Kids definitely get it as well. But I didn’t even know it existed until I had it.”
Her then best friend caught Covid at the same time as her; her friend got better, she did not. When Godfrey eventually went back to school, her friend asked why she hadn’t been around. “I said I had long Covid. And she asked me if I actually still had it, which was a bit weird, because it is in the name, ‘long’ Covid. It’s hard, if you get better from Covid, to see that it could have gone so wrong for you. We’re not really friends any more – after I got ill I moved school so I could have a fresh start.” After a few years mostly spent at home, Godfrey started officially being home-schooled last year, doing some GCSEs early to space them out. “I wouldn’t have been able to do nine of them in school at once. Home-schooling is definitely better for my health, and I can take things at my own pace. But it does get a bit lonely.”
Now 15, Godfrey reserves the bulk of her energy for Saturdays, when she goes to a theatre club. “At the moment, we’re doing Beauty and the Beast and I’m Cogsworth, which is lucky, because he’s a clock so he doesn’t have to dance much.” While the others practise the dance routines, she looks after the younger children; one day, she hopes to be a primary school teacher. She is also a children’s author: she wrote and illustrated a book, Star Dizzy Lizzy, about a bird who wants to fly to the stars, “but when she tries she gets really dizzy, so she has to find new ways to do it”.
One of the groups that was especially badly hit by long Covid was healthcare workers. Owing to high viral loads, poor PPE provisions, and a lack of immunity from prior infection or vaccines, hundreds of doctors and nurses died of Covid, and a significant proportion went on to develop long Covid. Many have had to take early retirement on ill health grounds; a 2023 study reported that one in five doctors were left unable to work, with less than a third working full time. Nearly 300 doctors and nurses, some of whom have been left living in poverty or homeless, are in the process of suing the NHS and other employers for compensation. (The lawsuit is unlikely to go to the high court before 2026 because of the public inquiry into the handling of the pandemic.)
Layla Moran, MP for Oxford West and Abingdon and chair of the health and social care committee, is pushing for affected workers – doctors, nurses, social workers, transport workers, teachers – to be compensated. “Images rush to mind of people standing on their front porches hitting pans and saucepans for those frontline workers who put others before themselves and decided to go into work, whatever the consequences. Now, I’m in touch with nurses and doctors who are at their wits’ end.” One solution, she says, would be to classify long Covid as an occupational disease, as more than 50 countries worldwide do. “That would mean they’d be able to get benefits specifically for that. It’s the very least we owe those workers.”
Paediatric nurse Sarah Matthews, 34, had only qualified in 2018, but she felt like she had found her calling. “I felt good at it and felt confident, and I loved working for children,” she says. “It had its challenges – the shift work was the biggest – but I loved it.” She was working on a busy ward at the Bristol Royal Hospital for Children, and was due to run a half marathon the following week, when she got infected with Covid in July 2021. For the first six months, she didn’t panic. “I thought, ‘Give me another month, then I’ll feel better.’ But once it has been two years, it becomes harder to deal with mentally. I just never got better, the energy never came back.”
Twice she tried to go back to work, on short shifts, but both times her health crashed. “Nursing is very physical,” she says. She was temporarily redeployed as a part-time receptionist, but after moving to Wales last year to get married, she struggled to find employment. “It’s hard to find a job where you don’t really need to do anything, and you’re sitting down and it’s only a few hours a week.” She now receives personal independence payment (Pip) and universal credit, which took a while to get her head around. “The interviews you have to have are difficult, and after three years I have to go through it all again, so I’m not looking forward to that.” Supporting medical professionals affected by the condition, she says, should be a priority. “Hospitals are already in such a dire state, and the fact there are so many nurses and doctors sat at home, not able to work, feels like a tragedy.”
It isn’t just medical professionals whose livelihoods have been affected. The estimated cost of long Covid to the global economy is $1tn, with millions of people out of work or on reduced hours. Many workers who had to take long-term sick leave were made redundant, and lawsuits are starting to appear in the courts, with long Covid tribunals surging by 86% in two years. (Last September, a tube driver was awarded £42,000 for unfair dismissal.)
The numbers of sick people leaving the UK workforce are at record highs, and there are endless articles bashing the unemployed, with titles such as “Who are the millions of Britons not working, and why?”. But these often make no mention of the words “long Covid”, and barely refer to the recent global pandemic. In 2022, Wes Streeting was reassuring people about how seriously Labour took long Covid, but now he is health secretary it seems to have dropped off the agenda. In the Get Britain Working white paper set out last November by the Department for Work and Pensions, long Covid is not mentioned. “It feels to me like the government isn’t putting two and two together: the shortage of nurses, all the people out of work since Covid,” says Matthews. “No one seems to say, ‘Oh, it’s probably because loads of people have long Covid.’”
This is one of the strangest, and most worrying, obstacles to long Covid research and support. After the profound trauma of the pandemic, we appear to have developed a collective amnesia about what has happened. It’s an understandable survival mechanism; collective amnesia after war is a well-documented phenomenon. But it means that, politically, long Covid has become something no one wants to engage with. “There is definitely a political preference to put this behind us as a society,” says Heightman. “It’s a horrible thing, and everybody wants to move forward and feel positive about the future. But whenever anyone has done analysis of fit notes and post-viral illness, it has shown absolutely that long Covid is a big driver of absence from work. It’s just not reported in those high-level summary documents, which doesn’t make sense to me.”
The unwillingness to discuss chronic illness in these conversations is especially concerning when combined with the scepticism faced by long Covid patients, who have to advocate for themselves so that medical professionals, employers and loved ones understand the gravity of their illness. Many report being disbelieved; shockingly, the then prime minister Boris Johnson scrawled “bollocks… this is Gulf War Syndrome” next to an October 2020 memo discussing long Covid and its symptoms. Anyone posting about their experience online is likely to be accused of lying, or being lazy, or in the pocket of big pharma. “I certainly think being disbelieved is one of the biggest traumas for Covid patients,” says Sinclair. (This distrust will be familiar to patients with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS, who have had their symptoms ignored or dismissed for decades. There is definitely overlap between long Covid and ME/CFS, says Sinclair, but they need to be differentiated.)
All of this conspires to make long Covid patients feel invisible, voiceless and forgotten. On top of the chronic pain and unpredictable recovery they face, the effect can be devastating to individuals’ mental health. Worrying numbers of long Covid patients report depression, anxiety and insomnia; in a 2022 survey, 45% of the nearly 200 patients who responded said they had contemplated suicide. “It’s a really awful illness,” says Heightman. “It’s not uncommon for us to have an appointment with someone, and them to share that they feel suicidal. It’s a particularly difficult illness to cope with, especially in people who were previously well, and the shock of losing their health and the uncertainty about the future is intolerable.” (Heightman recommends that patients struggling with these issues speak urgently to a GP or NHS 111; further support can be found online.)
Roughly one in 10 long Covid patients go on to be diagnosed with PTSD; Brown is one of them. “I’ve never really understood when people talked about being triggered,” she says. “But now that I’ve experienced this level of trauma, I do.” During the worst stages of her illness, she spoke to her school’s psychotherapist once a week. “I don’t know how I would have survived mentally without her. She was a way of holding on to a piece of me, so that I could remember who I was as I went through this.” On top of being bed-bound, once it became clear that classroom teaching was out of the question, she found the lack of direction difficult to deal with. “There have been moments where you think: is this a life I want to have? I was lucky enough to have the resolve and that fabulous psychotherapist to hang on to, but I do find the assisted suicide debate triggering, because I can imagine a lot of people in that situation thinking: this is not a life for me.”
There are, however, reasons to be hopeful. Since 2021, Heightman and her team have been running a clinical trial at UCLH called Stimulate-ICP, looking at three different medicines for long Covid, including an anticoagulant. The trial has completed successfully, with results expected towards late April or early May. “We’re going to come up with some really good treatments soon,” she says. “Research always feels like a really important part of hope.”
Sinclair agrees: “There’s always something you can do. So if someone says to you, ‘I’m sorry, there’s nothing we can do’, in that case, what we can do is care, we can research, we can campaign. I’ve never lost hope that we will conquer this.”
Of course, there are still challenges to come. Over in the US, Trump’s withdrawal from the World Health Organization and the appointment of vaccine sceptic Robert F Kennedy Jr as health secretary are unsettling developments. (Heightman explains that, although vaccines can flare up symptoms in some patients, they are for the most part “a good thing”, reducing both the risk and severity of long Covid.) Future pandemics are a concern. “Five years from the last pandemic just makes it five years closer to the next one,” says Moran. “We know it’s coming, and we don’t have to bury our heads in the sand this time.”
Even though we are seeing fewer headlines about long Covid, previously healthy people are still contracting it, with each successive infection increasing the risk. “We sometimes will see someone who’s had Covid one, two or three times without problems, and then on the fourth time, suddenly they’ve got long Covid, and that makes them ill for a long time,” says Heightman. More disturbing still are the risks associated with chronic inflammation for long Covid patients, even if they have outwardly recovered. “It’s likely to age you,” says Sinclair, “so it’s going to shorten your telomeres, and therefore increase your risk of early death. It’s also going to increase your risk of any inflammatory condition: cancer is a high risk; we may get heart disease, diabetes, dementia. There’s a huge knock-on in every body system from long Covid.”
The pandemic, we are told, is over: in May 2023, the WHO declared that the global health emergency had ended; phrases such as “post-Covid” and “post-pandemic” are now commonplace. For some people, however, things are slightly more complex. “When you’re stuck with long Covid, you do feel a bit left behind now,” says Brown. “Everyone says, ‘Oh, lockdown seems like ages ago.’ And you’re like, yeah, which means we’ve been ill for a really long time. We’re watching the world move on while still facing the unknown of what our futures are going to hold. It’s been five years. It’s going to be another five years. We’re losing decades of our life to this illness.”
Five years on from infection, I have seen improvements in my health. But I am still not quite the same as I was before March 2020. The illness has left its mark on me, something profound and indelible. I am on daily medication to regulate my heart rate, and have replaced running with gentler forms of exercise such as yoga; when tired or stressed, I feel a dull, metallic pain in my chest. One of the consequences of being ill for so long is that my husband and I have decided, for now at least, to focus on our own recovery rather than starting a family. I try not to think about what will happen with my next reinfection, or what the health implications of prolonged inflammation might mean in the longer term.
No one is keener to move on from the trauma of the pandemic than those who continue to feel its effect in their body on a daily basis. It may be tempting to try to put that time behind us, to pretend it never happened. But for the sake of those who didn’t get better, we need to keep talking about long Covid, calling for the government and employers to give those who are suffering the support they desperately need. Only then will we all be able to truly move on. “I’ve given up a bit,” says Matthews. “Nobody knows what to do with us, so it feels hopeless. I don’t know if it’s ever going to happen, but I’m waiting for some big breakthrough.” If she was magically cured tomorrow, what would be the first thing she would do? “I’d go for a swim in the sea, go for a run, and then go on holiday. And maybe climb up a mountain.”
In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email jo@samaritans.org or jo@samaritans.ie. In the US, you can call or text the Suicide & Crisis Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counsellor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
Article by:Source: Kathryn Bromwich
