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

Niamh took 20 minutes to wash her skin and she cried throughout. This was December 2020, when Niamh, a first-year student at Leeds University, had lived with long Covid for two weeks. She says that she didn't have the energy or strength to move her arms. She recalled sitting on the toilet and trying to get up to run the tap. It took her all her energy to turn on the water. She says it sounds ridiculous, but it made me cry. I was confused and in shock.Niamh was active until then. Niamh was a regular at the gym and competed in swimming school. After catching Covid in Freshers Week, she was a shell of herself. She would feel so tired that she felt like it was in her bones when she woke up the next morning. She says she has never experienced fatigue like this. It was almost as if she had been hit by a train, or ran a marathon. Even gentle activities like walking with friends would make her gasp for air. She could not smell or taste anything. She felt chest pains and had palpitations. She stayed in bed scrolling through social media, trying to forget that she was missing out the student experience she longed for.The symptoms persisted for most of the following year, even into May. Niamh's sense of taste and smell improved to a certain extent. However, she survived on bland foods, potato waffles, vanilla protein, and plain food because all else tasted bad. She would faint or almost faint at least once a month. In May, she fell on the floor of the bathroom after a birthday outing. Doctors advised her that she might eventually need a pacemaker because of a heart condition. Today Niamh still experiences fainting and palpitations. She also struggles with low energy, can't smell or taste the same as before.She says that it is almost like I'm going to collapse if I stand up slowly. I think to myself, "Why can't I be like everyone else?" I don't know why this happened to me.Niamh is one among the 106,000 young people living in the UK with long Covid. Of these young people, 72,000 of them are between 17 and 24, while 34,000 are below 16. Long Covid is generally a condition that affects older adults, but it can also affect children and teens. 72,000 are between 17 and 24, while 34,000 are under 16.According to Dr Elaine Maxwell, of the National Institute for Health Research, we can confirm that children have long Covid. Long Covid has many symptoms. The problem is that there is no one definition. Children have different symptoms. A recent study by Fair Health, the US insurance company, found that children under 18 years old are more likely to experience intestinal problems and adjustment disorders (emotional reactions or behavioural reactions to stressful events).These symptoms can sometimes be treated with suspicion due to their divergence. Maxwell says that we are still at the stage when some people believe children don't have long-term Covid. Is this anxiety? Anxious parents can make it worse by expressing anxiety to teachers, social workers, and medical professionals. This adds to the uncertainty and stress of being a teenager with long Covid. People with similar conditions, such as chronic fatigue or chronic fatigue, report that healthcare workers often dismiss them.Sammie Mcfarland, Long Covid Kids' founder, said that people are being minimized and not believed. The group has 3,500 members ranging from seven months to eighteen years old. Mcfarland started the support group in response to Kitty, her 15-year old daughter who got long Covid in spring 2020. Mcfarland, who has also suffered from long Covid, mentioned Kitty's condition to a nurse at a doctor's appointment in the autumn. Mcfarland said that Mcfarland had told her daughter that she was experiencing similar symptoms to mine and it was due to lockdown. She would feel better if she saw her friends again.Some people still believe that children don't have the right to live for too long.Dr Danilo Buonsenso is from the Gemelli University Hospital in Rome's women and childrens section. He says that Long Covid is easier to accept in adults than it is in children. Her condition was determined by other doctors to be psychological. Buonsenso ran advanced tests that were not routine and found that her condition was psychological. She also had chronic inflammation, lung perfusion problems, and cardiac pulmonary problems. He says that Long Covid in children is more common, which is good news. It is still true.Mcfarland has heard of schools who have reached out to social services to inquire about parents of long-covid children, as they had missed school for so many years. Mcfarland says it is difficult to prove that your child is sick when their symptoms change almost on an hourly basis. Mcfarland states that their pattern of recovery does not fit with the school attendance schedule they want them to follow. They are rare. Because there is no clear guidance from government regarding how schools should respond to Covid among young people, schools lack clarity.James, 12 years old, from Birmingham, states that others can also be skeptical. He says that no one can understand it, and no one attempts to sympathize. In April 2020, he contracted Covid. He has experienced recurrent episodes since then of diarrhoea and stomach pain. I'm usually fine, but I get episodes every three to four weeks.He almost got into an argument with his schoolmates when he hid his stuff for a joke. Because I was so sick, I took it wrongly. He says that I couldn't bear to deal with all the crap. I tried to kick one of them but couldn't physically. He now spends his time playing Fortnite and Call of Duty. Is he lonely? He replies, "I can do it." Yes.It can also lead to lower grades if you take so many days off school. Emma, 14, from Berkshire, states that it takes all my energy, which is very little, to drag myself to school. I think, "Just get through this day."I cannot afford to have Covid again. Emma and Luna, her dog Luna, have been with me for 15 months. Photograph by Sarah Lee/The GuardianEmma has been on long-term Covid since May 2020. Emma is currently on medication to control her heart rate and nausea. Although her condition has improved in recent months, she still feels dizzy. She says it has completely turned my life upside-down. She was a competitive gymnast before she got Covid. Now, she cant do a handstand. She says that my arms are just bending in.Last year, her attendance was only 30%. She sighs and says that I am supposed to start GCSEs next school year. Although I do my best to catch up at home it is not the same as going to school. I'm seriously behind and don't know if I will be able stay in my year in September. Emma is also nervous about returning to school after all the restrictions in England have been lifted.My school doesn't care about Covid. They don't care about it. It's nothing. It's a cold. To be truthful, I don't want to go back. Isolation is a major problem.Many of Emma's peers have long Covid and share her views. Mcfarland says there is a lot of worry right now about what will occur in the autumn. We can currently keep our children in the outdoors and socially distant, but there won't be any mitigation measures in English schools in September, so the risk of reinfection is high.Tom, 13, who now lives in Devon, caught Covid. He used to play basketball and rugby every day. He says that he was unable to walk after falling ill in March. He is now anxious to return to school, just like Emma. He says he is worried about getting it again. He doesn't get why all restrictions were lifted so quickly. He says that while I don't mean to be politically correct, I find it quite stupid that people no longer wear masks.Buonsenso claims that the vast majority (over 90%) of children won't contract Covid. It is vital that schools stay open. He says that school closures can cause severe harm to children and adolescents. We need to strike the right balance. We need to balance vaccinations and masking but also understand that Covid and long Covid are real in young people.It would be a good idea for the government offer the Covid vaccine to under-18s, just as in the USA (which recommends that children aged 12 and over are vaccinated), and Ireland (16 where 16 is the minimum age; set to drop to 12 this Thursday). On August 4, the UK government announced that anyone aged 16 and over can get the vaccine in a matter of weeks. However, healthy 12- to 15 year-olds are still excluded. Mcfarland says that the majority of parents in our study want their children to receive the vaccine. However, they are frustrated that the vaccine is not available to them.Maxwell is puzzled by the refusal of the government to vaccinate children under 16 years old. She says she doesn't understand why the UK is so reluctant to vaccinate under-16s when other countries are doing so. Buonsenso says he hasn't seen any reports of adverse events in children from other countries, but he is more concerned about older adults living in low- or middle-income countries than children in the developed world. Although there is much debate about vaccinations in the UK, he believes that it is advisable to give vaccines to children 12-18 years old.Long Covid is a cruel and reprehensible punishment for young people. Your teens experience time differently. Summer holidays spent indoors can feel like a long sentence in prison. Missed birthday parties and school balls are a pain. The UK's opening means that teens with long Covid can now enjoy relatively carefree summer vacations. Emma says Freedom Day is the opposite for me. I cannot afford to have Covid again. I've been sick for 15 months. That is something I will never go through again.Although there is no magic bullet, my psychologist evaluated me and gave me some advice on how to deal with it as a young adult.Mental health can also be affected by the psychological toll. Niamh says that I don't think I've ever cried so much. Tom also struggles with low mood. He says that whereas you used to be motivated to play sports at school, you now feel depressed and want nothing to do with it. You think, "Why would I do that if it was hard?" He spent much of his time in bed watching Rick and Morty and playing video games.James sounds exactly the same. He says that mentally, I've just lost it. James is always irritable because he is ill. James gets in fights with his older brother. He says that he has a very short fuse. The consequences of this fuse can be different. This can lead to anger, sadness, or anxiety.Many young people feel disconnected from their friends because they spend so much time away from school. Emma's closest friends are supportive of her energy levels but it is hard to miss out with her year group. People on social media are often seen shopping in London or swimming in the nearby lake. I cannot make it to London, even if I drive an hour. It makes me feel a little stuck and useless when I see my classmates going to the beach with their friends.Teens with long Covid are feeling a loss. Emma says that she feels like she has missed out on all the things she used to enjoy. Emma says that this is an important time in your life. She says in a strangled voice, "Sometimes I feel so trapped at one spot." To be able go to the beach, or to travel. And gymnastics. There are many things.However, there are signs of recovery and hope. Niamh visited a Covid clinic for a long time and is now doing much better. She says they were wonderful. They don't have all the answers. There is no magic bullet they can give to help you. My psychologist evaluated me and gave me some advice on how to deal with it as a young adult. She says that I need to rest the days before and after to gain strength and recover from it.Long Covid management in teens is a complex task that requires both investment and specialists to evaluate each case and manage each individual. Buonsenso says that long Covid can be very expensive to understand. It requires a lot of research and different specialists. NHS England announced in June that 15 paediatric hubs will be established to treat long Covid. Mcfarland hopes that the Department for Education will take steps to reduce the spread of Covid in schools before the summer vacations end. She says that we need ventilation and Hepa filtering, as well as CO2 monitors. The safety of children's education is essential, and it is not available at the moment.Teens with long Covid can have some hope. With proper medical management and time, their symptoms will subside and life will return to normal. Niamh says that I'm not the same person as last year. I've been through so many things. Because I've gone through it all in the past year, I feel mentally stronger than ever. It's almost like you can do anything.Samaritans in the UK and Ireland can be reached at 116 123, or by emailing Jo@samaritans.org. The National Suicide Prevention Lifeline number in the USA is 1-800-273-8255. The number for Australia's crisis support service Lifeline (13 11 14) is the number. You can also find international helplines at befrienders.org.