‘I was incredibly strong and fit,” says Lucy Keighley. And she looks it, in the photo she is showing me, taken a few years ago. She is with her best friend, Lorna; they have just completed a 15-mile race on the North York Moors. “It was a brutal race,” she says. “But it was great. I was happy.” Today, although it’s quite dark in the room (she doesn’t get on well with bright light), I can see a tear rolling down her cheek. “I don’t know if I’m ever going to get back there.”
Lucy, 49, still runs – across the moors and along the coast – but only in her sleep. “I’m so light on my feet. I was never a light-footed runner in real life. But in my dreams I am so light, I can run so far, and it feels joyous.”
In reality, just walking up the stairs at her home in Stockton-on-Tees, County Durham, has taken it out of her, given her a sheen of sweat and stolen her breath. Her breathing is always audible and sounds shallow. Sometimes, out of nowhere, she breaks into a fit of coughing.
When that photo was taken, Lucy ran a gym. It was her business, her baby – she worked as a personal trainer and ran fitness classes there. The gym was called Evolve NCA. NCA? “I knew you’d ask. It’s rude,” she says. There was a not-rude alternative she would tell people when necessary: new challenges ahead. But, go on, what did it stand for? “No cunts allowed.”
And they weren’t. She tells me about some of the people who got banned. Lucy has lost a lot – her health, her business, her livelihood, nearly all her money, her passions, her life as it used to be. At one point, she lost the will to live. But somehow she has managed to hang on to humour.
When her gym had to close in 2020, because of Covid restrictions, Lucy took up volunteering – shopping, delivering prescriptions, calling people. She got the virus at the end of that year and was quite poorly with typical symptoms – cough, shortness of breath, fatigue – but not as bad as some. She went back to work when the gym could open again, but found that she couldn’t exercise. Even training others was unbelievably hard.
Then, at the beginning of 2021, during the third lockdown in England, her health tanked. “Breathing was challenging. I couldn’t cope with stairs, washing myself, cooking, even tying my own shoelaces. I kept trying to push through, but that just made things worse. I’d gone from being a lifelong insomniac to sleeping 15-plus hours a night. Sometimes the sleep was so deep I’d wet the bed,” she says. “I was so ashamed.”
Lucy’s GP diagnosed her with long Covid and referred her to a specialist clinic. The help she got was limited. “Every medic I saw did their best, but it was all so new; nobody knew anything. I got introduced to graded exercise therapy, to try to improve my fitness, but that just set off a massive crash. The most a long Covid sufferer can do is manage symptoms and pray things get better. Even if things do improve, one activity too many in a day can be debilitating and set you back. It’s like a game of snakes and ladders with one-rung ladders and a whole bunch of snakes.”
By the summer of 2022, her mood hit a low point. “I couldn’t see a future that would bring me any satisfaction,” she says. “Suicide ideation plagued me. I’d try to walk to the shop and have to stop to breathe. I can’t carry bags of shopping because carrying a weight and walking is just insanely difficult. And so you’d go to cross a road and you’d think: there’s a lorry, you could just step out in front of that, that would stop all of this. Then the other side says: that’s not fair on the lorry driver.” She worried about her cats, too – who would look after them? One of them has settled on me. “That’s Scampi. Don’t let him breathe on you, he stinks,” Lucy warns.
She got mental health support, had some sessions with a psychologist and was prescribed antidepressants. Mentally, she is in a better place now; physically, not so much. “I’m three years in, I’m four stone overweight and do not recognise myself. I feel ashamed when I look in the mirror. Not only do I see someone who’s hideously overweight, I see someone who’s weak. Some of my symptoms have improved, some have gone, but I’ve not had one day of feeling well or normal in all that time. I don’t think I’ll ever recover. I think I’ll just have to learn a new way of life.”
In September, the Guardian published a reader callout asking for long Covid stories. The response was extraordinary: more than 950 people – including Lucy – got in touch, from across the UK and beyond – Germany, Belgium, the US, Mexico, New Zealand. Almost 1,000 people for whom Covid is very much not over.
In the most recent findings by the Office for National Statistics, released in April, an estimated 2 million people in England and Scotland (3.3% of the population) self-reported experiencing long Covid, meaning symptoms that continued for more than four weeks after infection, although many reported their symptoms had lasted two years or longer. Of those, about 1.5 million felt their day-to-day activities were affected, while 381,000 said their day-to‑day activities were “limited a lot”. Worldwide, at least 65 million people are estimated to have long Covid.
The responses the Guardian received were merely a snapshot, but they were heartbreaking. Looking through them, all I could see was suffering. How could we possibly tell all of your stories? The simple answer was that we couldn’t. Many respondents wanted to remain anonymous, while some didn’t feel well enough to be visited. We chose three people with different experiences – who were happy to be interviewed and photographed – whom we hoped were representative of the bigger picture. Lucy, whose story I am telling today, is the first.
But it feels important to represent the experiences of those whose stories we could not tell. So I have collated the responses into a crude amalgam patient, for which I apologise, but I didn’t want your experiences to go unheard.
The symptoms of those who responded could fill pages, although there is a lot of common ground. Fatigue is the main ailment – many of you used to run, row, cycle, do yoga, lift weights and climb mountains. Now, you can no longer walk the dog, cook, work, dance or even get out of bed. Some of you sleep for 12 or 14 hours a day, but others endure brutal insomnia. Some of you now use a wheelchair or a mobility scooter. The fatigue makes you feel as if you have been poisoned, or are experiencing the worst jet lag, or that your battery is flat. It’s hard to describe unless you have experienced it, many of you say – although you all describe it amazingly and powerfully.
The brain fog is overwhelming. You forget people, places, things you have just done. And words. Your vocabulary has become limited; you find it hard to follow conversations, books, films and TV, instructions and directions. Some of you spoke several languages; now, even one is hard. You can no longer draw. Even the simplest music is hard to play on the instrument that you were really, really good at before.
There are more physical symptoms: breathlessness, joint pain, headaches, hair loss, chest pain, palpitations, tachycardia (fast heart rate), hearing loss, tinnitus, vertigo, constipation, diarrhoea, oedema (swelling caused by fluid buildup), hypoxia (low oxygen levels). There are some embarrassing ones, too – your labia are swollen, your testicles ache, your foreskin is sore. Your taste buds have changed in strange, unpleasant ways – mustard now tastes like soap.
You have seen doctors. They have been brilliant and terrible; they have done their best, but without enough knowledge; they have been dismissive and ignorant. You are a doctor. You feel that your GP doesn’t believe you, or even that some of your family don’t believe you; they put it down to anxiety. It’s frustrating, having to convince people that you are not well; you feel gaslit.
You pinned your hopes on the long Covid clinic, but it has been disappointing – just surveys, occupational therapy, breathing exercises and cognitive behavioural therapy. You feel that long Covid has been psychologised. In the clinics, you sit around in a group talking about how to live with fatigue, but you don’t want to live with fatigue. Still, it has been good to meet other people going through the same or similar. A community makes it less lonely. And long Covid is really lonely.
Some of you feel like you can’t be a proper parent or partner. Your relationship has broken down completely. You feel twice your age. You have moved back in with your elderly parents; you feel the same age as them. It’s like a bad episode of Quantum Leap, where you have woken up in your own body, but now you are 86. Some of you are young. You have missed school. You have lost your childhood.
Long Covid has taken a huge toll on your mental health. You feel resentful, angry, lost, unseen and unheard, left behind and forgotten about. Your confidence is shot to pieces. You are existing, not living; you want to live again. You are in mourning, grieving for the person you used to be.
Dr Binita Kane is a consultant respiratory physician from Manchester with a special interest in long Covid. She worked on the frontline in the city during the acute stage of the pandemic and brought it home. Her 10-year-old daughter, Jasmin, got it, became very unwell and later developed long Covid. Jasmin didn’t leave the house for a year and missed a lot of school. Kane wasn’t satisfied with some of the advice they were getting, so she consulted doctors in Germany and South Africa who were pioneering new treatments. These helped Jasmin, slowly – over the next two years, she improved. Now 13, Jasmin is at secondary school and about 95% recovered.
This led to Kane specialising in treating long Covid patients, including children. She is able to do this only privately and says there are funding and structural problems that prevent her from doing the work in the NHS.
Kane has witnessed the virus at all stages and from all angles. She explains that long Covid is an extension of acute Covid. “Some people don’t agree with that, but that is what those of us who are interested in it believe,” she says. And it’s not true that little is known about it. “It’s the most-studied disease in history – something like half a million papers have come out in four years. There’s never been anything like that for any other condition.”
Kane recognises all the symptoms of the long Covid sufferers who responded to our callout. She says there are “four or five main buckets that people fall into with regard to what’s gone wrong with their systems”.
Blood vessel inflammation is one bucket. Another is autoantibodies, which is “the body starting to make antibodies against itself and attacking itself”. Having an effect on the immune system is another: “One of the things that we see quite a lot is activation of so-called mast cells, so that drives a lot of the allergic-type symptoms and rashes.” Then there is disorder of the autonomic nervous system, which is “the body’s control centre for all the stuff we don’t have to think about – digestion, breathing, blood pressure, heart rate”.
Finally, there is “leaky gut or an imbalance of the good versus bad gut bacteria, which can lead to inflammation in the body and contribute to symptoms”. Some people display features of one bucket, while some have overlapping buckets.
She thinks there are parallels with the way myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome, is perceived. “The ME community have suffered terribly over the years,” she says. “As a doctor, I look back and I go: gosh, we were almost trained to believe that these conditions are psychological. That’s how we’re taught, because you can’t explain it. Anything that’s unexplained must be in a patient’s head, right? I look back and I go: wow, I was actually part of an infrastructure that taught us this wrongly. Not only do we not treat it, we are taught the wrong things about it.”
Now, she is making up for it by spreading the word about long Covid, raising awareness, trying to understand it more and treating patients. With such a huge range of symptoms, treatment options vary, but in short she looks in the buckets and treats “what’s in front of me”.
When Lucy talks about the person she used to be – the incredibly strong, fit Lucy – she does so in the first person. Of course she does – she is talking about herself. “I trained 11 times a week, I could bench-press 100kg,” she says. But when she talks about herself now – the person she has become, long Covid Lucy – she often slips into the second person. “Sometimes you don’t leave the house at all because you can’t walk.” “You sit to chop vegetables, you sit whenever you can, to conserve energy.” It’s almost as if she hasn’t accepted – or doesn’t want to accept – that this is who she has become.
She has made notes in preparation for my visit, so that she can remember what to say. There is a spider diagram with first-person Lucy at the centre and her busy life branching off in all directions. Work, the gym, vice-chair of the local rugby club, friends, a busy social life, gardening, decorating, reading, gigs, travel, cooking …
Then there is another, much sparser, spider diagram with long Covid Lucy in the middle. There are far fewer legs. No travel, gigs or gardening. Reading is still there, but she finds it hard to follow storylines. “And I can’t remember who characters are. I’m reading a Richard Osman book at the moment and there’s this character and I’m thinking: I have no idea who that is.” It’s the same with TV; she watches a lot of Brooklyn Nine‑Nine “because it doesn’t require a lot of brain power – it’s just funny and silly”.
Lucy now has “a Magna Doodle mind”. Magna Doodle? I don’t know what that is. She explains that it’s a kids’ drawing toy, like an Etch A Sketch. You draw something, then wipe it clean with an eraser bar. One minute, something is there; the next, the screen is blank. “Sometimes the Magna Doodle mind is a great thing because it stops you worrying about things,” she says. “But it does mean I forget a lot.”
The Magna Doodle mind is why she has made notes and diagrams. On the long Covid diagram, there are up and down arrows next to some of the things that haven’t disappeared completely, to indicate the direction in which they have gone since she got long Covid. They are all down arrows, apart from one (which we will come to).
Her social life has a down arrow. She has a great circle of friends, but it has become smaller. “If you stop going to things, people stop inviting you,” she says. “I think they get sick of you saying no.” Lucy used to be the instigator and organiser of girls’ nights out. Do they understand? “They really try their hardest, but they don’t get it. The people that love you want to help, but they don’t necessarily have the tools to do so. The person they knew doesn’t exist any more. I’m not that person. I don’t know if I’m ever going to be that person again – I can take an element and put in new, long Covid me, but it’s not me.” She feels guilty, as if she is letting people down. Again, she wipes away a tear.
As well as the brain fog, the fatigue, the breathlessness and coughing, Lucy’s symptoms include painful muscles and joints, oedema, headaches, earache, random rashes, itching, painful gums and sensory overload (if there is too much light or noise, she finds it hard to absorb what is going on around her). She struggles to regulate her temperature – she gets boiling hot – but she says that might also be to do with the menopause.
She reads everything she can find about long Covid and has heard that there are up to 200 symptoms. “How the heck is anyone meant to unravel that mess?” she asks. She thinks there is a lack of understanding at GP level, although hers was very good in helping her through her thoughts of suicide. At the moment, as well as antidepressants, she is taking steroids for the inflammation of her lungs. She breaks into another coughing fit. They can be painful – “intensely painful, enough to make me vomit”.
Lucy finds some comfort in online groups of long Covid patients, meeting people who are going through similar experiences and sharing tips. “I’m not one of the worst: I’m not wholly bed-bound; I can make a cup of tea,” she says. I can vouch for that; I have one in my hand. And she works, because she must – for a letting agency, a friend’s small family firm. “They needed some help, I needed a job.”
She drives to work, in her automatic car, and when she is there it’s not too strenuous. It’s admin work, mostly putting through invoices. The human contact helps. “I have always been an incredibly social person, so without some element of social contact I’d just sink further into depression,” she says. They are understanding at work: “If I need the morning off to sleep more, they say: ‘We’ll see you at lunchtime, then.’” And they know – and won’t mind her saying – it’s not what she would like to be doing. On the spider diagram, work is a down arrow.
What about her up arrow? It’s next to “romantic relationships”. She wasn’t seeing anyone when she got Covid; now, she is. They met the normal way – online – got chatting, got along. Before meeting, they dropped their respective bombshells: for him, it was that he has been married three times; Lucy’s was long Covid. “Saul is very laid-back – it was almost good news for him when I said I had a lot of physical limitations. He didn’t have to start planning elaborate dates to keep me entertained.”
Saul is an outdoorsy type – he likes climbing hills and walking across moors. Lucy is sad that he never knew incredibly strong, fit Lucy and they never did that stuff together. The other day, they managed a short walk on flat ground around a reservoir, with a lot of bench stops. “Actually, I might have got on his nerves before; I would have been too energetic. But I would very much like for him to have met the more positive version of me.”
Lucy tries not to dwell on the past. Or the future, for that matter. “It’s best not to think about who I was and best not to think about what might be ahead because it’s unknown. I would like a full recovery, but it doesn’t feel likely, not after three and a half years. People are recovering and that is phenomenal. We hear on social media groups that people have recovered and are climbing mountains and doing all sorts of things, but for me it doesn’t feel like that’s going to be possible and if I think about it I get really upset. So I just go for: I’m going to get through today.”
She has moved in with Saul. As well as being her partner, he is, she says, her carer. He does all the shopping and cooking. “I feel guilty and ashamed that I can’t do things. It’s not that he thinks I’m lazy; he knows I’m not. But in a normal relationship one person might be feeling more tired than the other one day and so take up the slack, but I’m not that person. I’ve been living with him for months now and he said the other day: ‘Do you know, you’ve cooked absolutely fuck all.’”
Luckily, Saul likes cooking. It’s going to be hard when he goes off on a short tour of Belgium and the Netherlands with his punk band in a couple of weeks. He will fill the freezer beforehand.
“And then the physical side gets affected because when you’re in pain, or your hips are in agony, your skin’s feeling itchy, you’re just not interested …” Lucy is interrupted by another painful coughing fit. “You can’t get intimate with someone who’s coughing like that; it’s not sexy.”
She says Saul got a bit fed up when she showed him the latest spider diagrams. “He said: ‘Do they look like the last ones?’ I said yes.” He agreed to give five minutes of his time to the new (not very different) diagrams “and set the timer on his phone”. “We had a laugh about it. He’s a good man.”
It would be easy, and understandable, for someone with a debilitating chronic illness to be miserable, obsessed, self‑obsessed – boring, even. Lucy is none of those things. She is clearly suffering terribly, physically and mentally, but she is also really good company: dead funny, self‑aware, engaging and engaged, interesting and interested. She asks me almost as many questions as I ask her (which I have to explain is not really how it works). Two and a half hours in her company has flown by.
It has taken it out of her, though. She is visibly flagging. “I’ll go back to bed afterwards,” she says, breaking into another coughing fit. Maybe there, in her sleep, Lucy will run again, across the moors, lightly and joyously.
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 National Suicide Prevention Lifeline on 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org
