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‘What is happening to me?’ The teenagers trying to make sense of long Covid

More than 100,000 Britons under 25 have endured months of debilitating symptoms, while doctors struggle to help and others fail to take them seriously. Four young people describe what it’s like.

 

It took Niamh 20 minutes to wash her face – and she cried the whole time. That was in December 2020 when the 19-year-old first-year student at the University of Leeds had been living with long Covid for two months. “I didn’t have the energy to move my arms,” she says. She remembers sitting on the toilet, trying to muster the strength to stand up and run the tap. It took all her energy just to switch on the water. “It sounds daft, but I cried,” she says. “I was like, what is happening to me?”

Niamh had led a physically active life until then. She went to the gym regularly and had swum competitively at school. But after catching Covid in freshers’ week, she became a shell of her former self. She would wake up in the morning and feel overwhelmed by a tiredness that felt as if it was deep in her bones. “I have never felt fatigue like it,” she says. “It was as if I’d been hit by a train or run a marathon.” Gentle activities, such as taking a walk with friends, would leave her gasping for breath. She couldn’t smell or taste anything. She had chest pains and palpitations. Mostly, she lay in bed, scrolling through social media and trying to ignore the thought that she was missing out on the student experience she had longed for.

For most of the next year, well into May, the symptoms persisted. Her senses of taste and smell returned to an extent, but Niamh survived on bland foods – potato waffles, vanilla protein powder – because everything else tasted foul. She would faint, or nearly faint, at least twice a month. An outing for her birthday in May ended when she collapsed on the bathroom floor. Doctors told her that she had developed a heart condition, most likely due to Covid, and might need a pacemaker eventually. Today, Niamh still faints and has palpitations, struggles with low energy and can’t smell or taste as she did.

“When I stand up, even slowly, it feels like I might collapse,” she says. “I ask myself, why can’t I be like everyone else? Why did this happen to me?”


Niamh is one of the estimated 106,000 under-25s living with long Covid in the UK. (Of these young people, 72,000 are 17-24 and 34,000 are under 16.) While long Covid is a condition that generally affects older people, teens and children can – and do – become ill. A recent study by King’s College London found that one in 50 children with symptomatic Covid had symptoms lasting more than eight weeks, the most common including headaches, tiredness, a sore throat and loss of smell.

“We can definitely say that children get long Covid,” says Dr Elaine Maxwell of the National Institute for Health Research. “But the problem with long Covid is that it’s not one definition.” Common symptoms of long Covid listed by the NHS include sensory problems, such as loss of smell and taste, brain fog and cardiac-respiratory symptoms. But children tend to have slightly different symptoms – a recent study of 2m insurance claims from the US organisation Fair Health found that under-18s were more likely to report intestinal issues and “adjustment disorders” (emotional or behavioural reactions to stressful life events).

Due to this divergence, these symptoms are sometimes treated with scepticism. “We are still at the stage where some people are saying that children don’t have long Covid,” says Maxwell. “Is it just anxiety? Anxious parents?” This disbelief can extend to teachers, social workers and even medical professionals, compounding the stress and uncertainty of life as a teen with long Covid. (People with similar syndromes, such as chronic fatigue, often report being dismissed by healthcare workers.)

“People are being minimised and not believed,” says Sammie Mcfarland of Long Covid Kids, which has 3,500 members, ranging in age from seven months to 18 years. Mcfarland set up the support group after her 15-year-old daughter Kitty got long Covid in the spring of 2020. At a medical appointment that autumn, Mcfarland – who also has long Covid – mentioned Kitty’s condition to a nurse. “She told me that my daughter was mimicking my symptoms and it was related to lockdown, and she would feel better when she saw her friends again,” Mcfarland says.

Dr Danilo Buonsenso, from the women and children’s department at the Gemelli University hospital in Rome, says: “Long Covid is more accepted in adults than in children because there is still this dominant narrative that it is mainly psychological.” Buonsenso tells me about a 14-year-old girl he treated. Other doctors had determined that her condition was psychological. After running advanced, non-routine tests, Buonsenso found that she had lung perfusion problems (her lungs were not oxygenating properly), chronic inflammation and cardiac pulmonary issues. “Long Covid is much more rare in children, which is good news,” he says. “But it’s still real.”

Mcfarland knows of schools that have contacted social services to investigate parents of children with long Covid because they have missed so much school. “It’s difficult to prove your child is ill when their symptoms can change on an almost hourly basis,” says Mcfarland. “Their pattern of recovery doesn’t fit the school attendance pattern they are trying to get them to adhere to.” Mcfarland says some schools have been fantastic. “But they are few and far between. Schools are lacking clarity because there’s no clear guidance from the government on how to respond to long Covid in young people.”

Others can be sceptical, too, says James, 12, from Birmingham. “No one understands it and no one tries to sympathise that much,” he says. He contracted Covid in April 2020. Since then, he has had recurrent episodes of stomach pain and diarrhoea. “I am completely fine most of the time, but every three or four weeks I have an episode for about a week.”

Recently, he almost got into a physical fight with schoolmates who hid his stuff as a joke. “I took it the wrong way because I felt so ill. I couldn’t be bothered to deal with any crap,” he says. “I tried to kick one of them and realised I couldn’t, physically.” Now, he passes the time playing video games such as Fortnite and Call of Duty. Does he ever feel lonely? “I can do,” he replies. “Yeah.”

Taking so much time off school can cause grades to slip, too. “It takes all the energy I have – which is none, really – to drag myself to school,” says Emma, 14, from Berkshire. “And when I’m there I’m thinking, just get through this day.”

‘I can’t afford to get Covid again. I’ve been ill for 15 months’ ... Emma and her dog, Luna.
‘I can’t afford to get Covid again. I’ve been ill for 15 months’ … Emma and her dog, Luna. 

Emma has had long Covid since May 2020. She is on medication for nausea and to stabilise her heart rate. Her condition has improved slightly in recent months, but she feels constantly dizzy. “It has totally flipped my life upside down,” she says. Before she contracted Covid, she was a competitive gymnast. Now, she can’t do a handstand. “My arms just cave in,” she says.

Her attendance last year was only 30%. “I’m meant to be starting GCSEs next year,” she says, sighing. “I try to catch up at home, but it’s not the same as being at school. I am seriously behind now and don’t know if I’ll be able to stay in my year in September.” On top of this, Emma is terrified about going back to school now that all restrictions in England have been relaxed.

“There are people in my school who don’t care about Covid. It doesn’t bother them. It’s not an issue, ‘It’s just a cold.’ Knowing that in September I will be going back to school with them, and there will be no restrictions in place, and they’ll probably be going to parties …” She sighs again. “I don’t really want to go back, to be honest. Especially with self-isolation gone.”

Emma’s views are shared by many of her peers with long Covid. “There’s a lot of concern right now about what will happen in the autumn,” says Mcfarland. “At the moment, we can keep our children socially distanced and in outdoor spaces, but in September there will be no mitigation measures in [English] schools and the fear of reinfection is high.”

Before Tom, 13 who lives in Devon, caught Covid, he played basketball and rugby regularly. Then he fell ill last March, “I got breathless just going up the stairs,” he says. Now, like Emma, he is anxious about returning to school. “I’m worried about catching it again,” he says. He can’t understand why all restrictions have been lifted so abruptly. “I’m not trying to be political or anything, but I find it a bit stupid how people don’t wear masks any more,” he says.

Buonsenso says the vast majority of children will not contract Covid and it is important that schools remain open. “School closures damage children and adolescents,” he says. “But we need to find the best balance. Vaccinations and masking, of course, but also understanding that Covid and long Covid in young people is real.”


The obvious solution would be for the government to offer under-18s the Covid vaccine, as is the case in the US (which recommends that children of 12 and older are vaccinated) and Ireland (where 16 is the minimum age; due to drop to 12 on Thursday). The UK government announced on 4 August that everyone aged 16 or older can have the vaccine within weeks, but healthy 12- to 15-year-olds remain excluded. “The majority of the parents in our group do want their children to have the vaccine and are extremely frustrated that children haven’t been included on the list of people allowed to get the vaccine at the moment,” says Mcfarland.

Maxwell is perplexed by the government’s refusal to vaccinate under-16s. “I don’t understand why the UK is so hesitant when other countries are going ahead,” she says. “I haven’t seen any significant reporting of adverse events in children in other countries.” Buonsenso agrees, with the caveat that he would prefer to see older adults in low- and middle-income countries prioritised over children in developed nations. “I know there’s a lot of debate in the UK about vaccinating children but, given how things are progressing, and the desire to keep schools open as much as possible, I would say it’s advisable to give children aged 12 to 18 the vaccine,” he says.

For young people, long Covid seems a particularly sharp cruelty. Time passes differently in your teens. Summer holidays spent indoors feel like interminable prison sentences; missed birthday parties and school balls sting. Also, now that the UK is opening up, the peers of teens with long Covid can enjoy relatively carefree summer holidays. “When people say Freedom Day, it’s the opposite of that for me,” says Emma. “I can’t afford to get Covid again. I’ve been ill for 15 months. I can’t go through that again.”

The psychological toll can affect mental health, too. “I don’t think I’ve ever cried more than I have this year,” says Niamh. Tom struggles with low mood too. “If before you were motivated to go and play sport at school, now you just feel really depressed and want to stay in,” he says. “In your head you think, why would I do that if it’s hard?” He has spent a lot of time in bed, watching the sitcom Rick and Morty or playing video games.

James, likewise, sounds completely miserable. “Mentally, I’ve just dropped off the end,” he says. Because he feels ill, James is constantly irritable. He gets into fights with his older brother. “I have a really short fuse now,” he says. “And the consequences of that fuse are different. It can be anger or sadness or anxiety.”

So much time off school has also left many young people feeling estranged from their friends. Emma’s close friends have been accommodating of her energy levels, but it is still hard to miss out on fun with her wider year group. “You see people on social media going swimming in the lake or shopping in London. I can’t make it to London because even an hour in the car is too much for me. When I see a group of girls in my class going to the beach and I’m just sitting at home, it makes me feel quite useless and a bit stuck.”

The overwhelming sentiment among teens with long Covid is a sense of loss. “I have missed out on everything,” says Emma. “This is an important part of your life, your teenage years.” What does she miss most about her old life? “Sometimes I feel so trapped in one spot,” she says, in a strangled voice. “Just to be able to go to the beach or travel somewhere. And gymnastics. There are a lot of things.”

There are signs of hope and recovery, however. Niamh has visited a long Covid clinic and is doing much better. “They were great,” she says. “They don’t have the answers; there isn’t a magic pill they can give you to sort you out. But my psychologist assessed me and gave me advice for dealing with it as a young person.” She is gradually increasing her time socialising with friends and has festivals booked this summer. “I have to have rest days before, to build up my strength, and to recover afterwards,” she says.

Proper management of long Covid in teens requires investment, as well as specialists to assess and manage each young person on a case-by-case basis. “Understanding long Covid is really expensive,” says Buonsenso. “It needs a lot of investigation and different specialties.” In June, NHS England announced that it will set up 15 paediatric hubs specialising in long Covid. Mcfarland also hopes that the Department for Education will introduce measures to mitigate Covid transmission in schools before the summer holidays end. “We need to see ventilation and Hepa filtration, in addition to CO2 monitors,” she says. “Children need to be educated in a place of safety and that is not currently on offer.”

For teens with long Covid, at least there is hope that, with time and proper medical management, symptoms will abate and normal life will resume. “I am not the person I was last year,” says Niamh. “I have been through so much. But I feel mentally stronger than I ever have in my life because I’ve been through it in the last year. It’s like, bring on anything else.”

In the UK and Ireland, Samaritans can be contacted on 116 123 or by emailing jo@samaritans.org or jo@samaritans.ie. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org.

 

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