16-year-old Jenny was a happy, active teenager until her life was turned upside down by her third COVID-19 infection. Here she shares her challenging experiences of Long Covid.
“I was a very healthy, happy, and active teenager, I was rarely unwell and had perfect school attendance. I was academic and played an active part in school life, enjoying numerous extra-curricular activities, such as drama, choir and debating. I was also a passionate tennis player. I had a personal coach and had just started training with the LTA Tennis Academy. I also used to do a park run every Saturday morning with my dad. I had boundless energy and took all this activity in my stride. I was thriving and simply loved life. I was excited about the future, was looking forward to progressing through secondary school and had aspirations of attending an Oxbridge University.”
Jenny caught COVID-19 in the early days of the pandemic, but she made an almost complete recovery from that infection.
“I was 13 years old when I developed Covid-19 symptoms in early February 2020. The infection started with an awful headache, and I then developed a dry, continuous cough, a fever and breathing difficulties. My parents were concerned and took me to the GP, who thought I might have developed asthma and prescribed an inhaler. I continued to deteriorate and we got extremely worried about my breathlessness; I would lie completely still, and my chest would be heaving and I felt like I couldn’t get enough air. My parents took me to A&E, where they checked my vitals, which were all fine, and sent me home, instructing us to contact the GP. This time, a different GP thought it might be a chest infection and prescribed antibiotics and steroids, which didn’t particularly help. I eventually recovered, although I lost my sense of taste and smell, which has never fully returned. I later found out that the father of my close school friends had returned from a business trip to China in January, and once we went into lockdown and the typical Covid 19 symptoms became known, I realised that’s what I’d had. I was relieved, as apart from my taste and smell, I made a full recovery, and went on to play some of my best tennis that following summer, once we came out of lockdown.”
Jenny’s second infection was more problematic.
“In November 2020, the UK was put into a second national lockdown, but schools remained open. I woke up during the night of the 4th of December with stomach pains. I totally lost my appetite and struggled to eat anything. I had no energy, and was incredibly weak and fatigued. This time, I didn’t have any of the stereotypical Covid symptoms; instead, this infection was very GI-focused and, in addition, I developed bloodshot eyes and an angry rash on my hands. I was unable to eat properly for approximately eight weeks, and I have never regained my appetite. Shortly after, I started to lose my hair severely; I’ve lost over 80%, which has been highly stressful and traumatic. I also remained incredibly pale, and I started to suffer from fatigue and breathlessness when exercising. We sought medical advice, and after a series of blood tests came back normal, the GP encouraged me to continue to go to school and exercise. My parents weren’t reassured and were both very worried about me, but I maintained I was fine, I’d just lost my fitness due to lockdown. I was in denial; I couldn’t believe anything like this could happen to someone as happy and healthy as me.”
Jenny’s third infection came as a result of close contact with a positive COVID-19 case at school.
“In early July 2021, my mum spoke to the GP and raised concerns about my health and the rising number of Covid cases and they agreed it would be a good idea to take me out of school before the end of term to avoid re-infection. Straight after the call, my mum notified the school and collected me before lunch. That evening we got a phone call from school to inform us that I’d had close contact with someone who had tested positive for Covid, and I was told to isolate. Once I came out of isolation I became severely unwell and my health began to spiral uncontrollably downwards. The fatigue was crushing, even on minimal exertion. I could not walk more than a few yards, I struggled to climb the stairs and got breathless just dressing myself. I got scary heart palpitations and developed light and sound sensitivity. That September, I attempted to go back to in-person school but only managed 2.5 days before crashing. I spent that winter mostly bedbound and suffering new symptoms daily. I was so scared, and emotionally I was distraught. Everything I knew and loved had been ripped away from me almost overnight; my health, my school, my education, my tennis, my friends, my independence, my future.”
Jenny has faced some of the most severe symptoms of Long Covid.
“I was 14 years old when I started to develop some symptoms of Long Covid following my 2nd infection, but I was still able to function and attend school. Six months later, after a 3rd infection, I developed overwhelming and debilitating fatigue, post-exertional malaise, significant GI issues and food intolerances, heart palpitations, temperature dysregulation, dizziness, tinnitus, insomnia, and cognitive impairment. I’ve had Long Covid for 3 years now and I have had numerous symptoms, some of which come and go, while others are constant, making day-to-day life unbearable. I’ve been mostly housebound for 2.5 years due to my extremely limited energy and have been unable to attend school or socialise with my friends as a teenager should. If I do need to go out and walk for more than 5 minutes, I need a wheelchair. Long Covid has had an immeasurable effect on my life, I am now unrecognisable from my previous happy, healthy self.”
Long Covid has forced Jenny to change the way she is educated.
“I miss my school intensely. I have so much grief for all the experiences I should be having, that I deserve to be having. I loved my school and was so happy there, and it’s incredibly hard to accept that it’s been taken from me, and that my life is now so limited and uncertain. Following the onset of Long Covid, I tried to continue to do my GCSEs, with my school providing online access to the live lessons. This was a great short-term solution as I was told at the Long Covid Clinic that recovery would take some months, but, as my Long Covid symptoms did not improve, I had to drop subjects and significantly reduce my timetable as I was simply too exhausted to do full time learning. I studied this way for two years to complete my GCSEs and over time, I became more and more isolated from my school friends and found it harder to follow the class lessons remotely. I sat a reduced number of GCSEs at home. I could manage one exam per week, but no revision and I still found the whole experience overwhelming and exhausting and my baseline health was reduced further. Once my GCSEs were finished, I wanted to focus on recovery, therefore my parents and I decided to take time out of mainstream school. I started an online school in September, taking only one A level in my favourite subject, which is just about manageable for me. The tailored online school suits my needs far better, and meeting other young people in similar situations has really helped the loneliness and isolation which comes with being housebound. It also has far more flexibility, for example, all lessons are recorded, which is helpful for dealing with fluctuating symptoms.”
Jenny has had mixed experiences of the medical profession.
“Some medical staff have been very kind and compassionate, and some doctors have believed I’m ill but have had little knowledge about Long Covid and, even with the best intentions, have given me wrong advice, such as continuing to push through and go to school and exercise, which made my condition much worse.
Other health professionals have simply not believed me, particularly when I described my fatigue and post-exertional malaise. One doctor told me, “I play tennis, are you really saying you couldn’t even hit with me over the net slowly?”
I’ve been told I’m deconditioned, have Functional Neurologic Disorder or ‘just anxiety’, and it’s been implied that I’m to blame for not recovering because of my personality type (that somehow being motivated and determined is preventing me from getting better).
Without my parents fiercely advocating for me, receiving adequate medical care would have been impossible. After three years, I feel very lucky that we have now found a fantastic doctor who is very knowledgeable about Long Covid, and while I know there is no magic cure, I’m so very grateful to be under the care of someone who understands this illness and is prepared to try to treat my symptoms.
However, I now suffer severe anxiety around medical appointments due to my negative experiences. The trauma of not being believed, by some of the medical profession and wider society, is one of the very worst aspects of this illness.”
Long Covid has isolated Jenny from family and friends.
“Some family and friends were sympathetic when I first became ill, but my school friends have long since moved on with their lives. I’m no longer able to do the things they want to do. We no longer see wider family either; my life and that of my parents has become very small.
I see the world carrying on around me, like the pandemic is over, as though the virus isn’t still out there. I feel very left behind. Very few people I know, other than my parents, are mitigating against the risk of catching Covid, despite them knowing what’s happened to me. They don’t think Long Covid will happen to them. People seem to think they’re invulnerable, but if it can happen to me, it can happen to anyone.
I feel public messaging on Long Covid is very misleading. Government and media talk about ongoing symptoms for only weeks or months. It really underplays the seriousness of this condition; it’s a totally debilitating, life-changing illness and affects every aspect of your life.”
To begin with, Jenny didn’t know anyone else with Long Covid, but over time that has changed.
“I developed Long Covid in the second wave and at that time I didn’t know anyone else personally - it was a very scary and isolating time. However, I’m now aware of a number of kids in my old school with Long Covid, a couple of whom have had to take time away from in-person learning like me. My parents each have a couple of friends and work colleagues who have Long Covid, and all have had to take time out of work.
I have now also connected with many other young people with Long Covid through online communities and through the charity Long Covid Kids, which has helped me feel less isolated and alone in this experience, although it is heartbreaking to see others going through this too.”
Jenny and her parents think governments are misrepresenting the risks of Long Covid.
“UK Government decision making and messaging has always focused on the acute stage of Covid -19. The key message to the public has been most children and young people only suffer mild symptoms.
However, the risk factor for Long Covid is different to that of the acute stage – anyone can develop Long Covid, after any infection, so just because you’ve been okay once or maybe twice doesn’t mean you’ll be okay next time – and if you develop Long Covid, there are no cures or approved treatments. The public, including children, young people and their parents, are not being warned. Not only are people not being warned, but medical professionals are not being educated about Long Covid either.
If I’d been more aware of Long Covid, been able to recognise the symptoms and understood what was happening to me and how serious the condition could be, I would not have pushed through the early months of the illness and may not have become so severe. I believe it’s the duty of governments and WHO to tell people the risk, loud and clear, and then take responsibility and appropriate action to prevent the spread of Covid 19 with mitigations such as clean air and ventilation. The only way to avoid Long Covid is to avoid catching Covid in the first place and that is impossible at an individual level.”
Jenny has a message for British Prime Minister, Rishi Sunak.
“Since the start of the pandemic, children and young people have had high exposure to Covid 19 from being in school settings with minimal or no protections. All my infections were caught in school. I believe this was based on an incorrect assertion at the start of the pandemic that children are not harmed by Covid 19 and as such children’s health was given low priority. There is now significant evidence that this is not the case - children get Long Covid. This is a novel virus, but no precautionary principles are being applied to children and young people. How many Covid infections will children get throughout their life, and how many will be harmed like me before the government takes action?
Before the UK Prime Minister announced Freedom Day in July 2021, the Houses of Parliament ventilation and air quality system was upgraded to ensure airborne viruses and bacteria were kept to an absolute minimum. Schools have not been given the same upgrade and children have not been given the same level of protection.
I would say to Rishi Sunak – protect children, ensure schools have clean air, just like you and your MPs in Parliament. Additionally, urgent help is needed for those children that have already been harmed by Covid 19 by funding biomedical research to find treatments. Current research is woefully underfunded, too slow and what research is being undertaken focuses on adults.
Children with Long Covid feel abandoned. We desperately need better medical care and educational support – when faced with an illness as brutal, cruel and debilitating as this, you shouldn’t need to fight for basic support.
Nelson Mandela said, “The true character of a society is revealed in how it treats its children”. History will judge how well the children and young people of the Covid 19 pandemic were treated, and I believe our leaders will be on the wrong side of history.”
Jenny says the worst thing about Long Covid is the fatigue.
“The crushing, crippling fatigue I have experienced every single day for three years has taken everything from me; it has stopped me participating in life. It has meant I have had to watch life go on for all my friends, whilst I stay stuck, my own body preventing me from doing all the things I desperately wish I could.
As things stand, my future is so uncertain. It certainly won’t go as I had always planned and hoped for, which is hard to come to terms with. At the moment I just take one day at a time – my hope is, of course, that I fully recover, but my current focus and priority is wholly on my health and recovery. However, my tennis bag is still packed, and I really hope that one day I will be able to play again.”
The John Snow Project publishes this series of perspectives as an account of the pandemic from people whose voices might not otherwise be heard. We provide participants with questions, and publish their answers as written.
When we asked Jenny if she has anything else to add, she said:
“I’m a huge Taylor Swift fan, and many of her lyrics have strongly resonated with me as I go through this illness and the huge amount of grief it has brought, such as:
‘I’ve been having a hard time adjusting
I had the shiniest wheels, now they’re rusting’
- From the song this is me trying
‘I’m never gonna meet what could’ve been, would’ve been
What should’ve been you’
- From the song Bigger than the Whole Sky
‘You’ll get better soon
Cause you have to’
- From the song Soon You’ll Get Better”
We’d like to thank Jenny for sharing her experiences and revisiting some extremely difficult times. We wish her well and hope policymakers hear her call for more support and funding for children with Long Covid and researchers who are trying to find ways to treat the condition.
Jenny and her family have received support from Long Covid Kids, a registered UK charity that works with families and children with Long Covid. If you’d like to learn more about Long Covid and how it can affect children or want to make a donation to this very good cause, please visit: Long Covid Kids.