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I wish I didn’t have to: becoming the mother of a child with long covid and an EP working with Long Covid Kids.

19th January 2021 was the day that everything changed for my family; the day I received my positive test result for Covid-19

How I became the mother of a child with Long Covid

It was the peak of another covid wave and I had just contracted covid following a hospital visit. My husband, daughter then aged fourteen and my son then aged twelve all followed suit and became ill too. It was just before vaccines became available for health and social care workers and would be months before teenagers would be eligible. Back in those days, the narrative was that children did not get covid, they did not transmit it and it did not really affect them. As if that was ok, the messaging was that only those with underlying health conditions were at risk from serious illness. I did not think for a second that my fit and healthy daughter would be so severely affected. If only I knew then, what I know now.

We were all fairly ill; we had sore throats, coughs, horrible headaches, high temperatures and were wheezy but we did not need to go to hospital. My son bounced back quite quickly after a couple of days. My husband began to feel better in a couple of weeks. I needed several more weeks before I was well enough to return to work, and still continue to suffer Long Covid symptoms of my own. My daughter did not got better and is still not better. Her symptoms have persisted from then until now and she has experienced debilitating daily symptoms ever since. She has a fever, headache, fast heart rate, palpitations, tight chest and dizziness every single day; for 436 days.

To begin with, we didn’t know what we were dealing with and kept saying to her, ‘maybe tomorrow will be the day you start to feel better’. That tomorrow has not come yet and we do not know when it will.

In those first few weeks and months, we visited the GP several times, were sent to A&E and she was admitted to hospital. Each time the doctors did not really know what was wrong with her. On one occasion the A&E Dr sent her home telling us ‘it’s probably just anxiety’. As a mother and EP, I knew that my child was grounded, not anxious; just unwell and that was difficult to hear.

Our beautiful sporty girl with her whole life ahead of her was suddenly living with a long term chronic illness that no one acknowledged existed in children, no one knew how to treat and no one knew when she would be better. Suddenly I was the mother of a child with Long Covid and I didn’t want to be.

Long Covid and the impact on our family

In the early days, the emotions were intense and overwhelming, sometimes they still are.

I have felt so much guilt for bringing covid home to her, so much powerlessness in not being able to make her better and fix things, a real lack of control in not being able to manage the systems around her and I would say heartbreak at how much Covid has changed her life. There is also an element of grief and a sense of loss; that Long Covid has stolen part of her childhood. Our first anniversary of contracting covid was an emotional day as we replayed the events of the year and how our lives have changed.

We have both had to deal with changes in our identity. She was fit and healthy before covid, competing at county level in squash and athletics and being vice-captain of her beloved football team. Now she finds it difficult to walk upstairs or walk to the end of our road without her heart rate racing, feeling dizzy and in pain. She has now put her sporting medals and trophies away in a box under her bed. She played sport, competed or trained for her events six days a week. Now she has to decide whether she can manage a shower or attempt one piece of homework.

Her school have been amazing and have put a lot of support in place so that she can attend on a part time timetable. I have gone from being a football Mum, athletics Mum and squash Mum who spent most evenings and weekends at sporting events raking the long jump pit or cheering on the side lines to the mother of a child with Long Covid who sends numerous emails to the school about their child. I still take my son to athletics training, but I find it incredibly sad to be at the athletics track without her and to see everyone else just carrying on with their lives as normal.

In navigating the myriad of hospital appointments with different specialists, for blood tests, lung function tests, ECGs, echoes, CT scans, MRIs, Tilt Table Tests and many others I fear I have become ‘that parent’. In a school system, at least I have some idea of what can be done, but being the parent of an ill child in the health system is another kettle of fish. I have learnt to befriend the medical secretaries and had to resort to drawing out a visual map of the various consultants, referrals and outstanding actions as I could not keep it all in my head.

I have learnt new language that I didn’t ever think I would need to know, words and acronyms such as POTs, dysautonomia and syncope now just roll off my tongue. I know more about the autonomic nervous system than I ever thought I would need to. There are so many admin tasks organising blood tests, chasing results, getting prescriptions, coordinating care it is like having another job and nothing is ever straight-forward. As another EP with a child with Long Covid noted it feels like ‘they are everyone’s patient but no one’s responsibility’.

I think one of the hardest things is the length of time the symptoms have persisted for, coping with a huge amount of uncertainty and to feel so alone in searching desperately for answers, treatments or anything that will make a difference, whilst everyone else just gets on with their lives. ‘Living with Covid’ means something vastly different for us.

How I Became an EP working With Long Covid Kids

I found the Long Covid Kids website and joined their Facebook Support group in those early months when I was desperately searching for information. Numbers in the support group were and continue to grow by several hundred every week. I lurked in the background to begin with, searching other posts describing similar symptoms and reading with horror that other parents had experienced this for almost a year at that point. I remember thinking that that sounded unbearably unthinkable, yet here we are over a year later ourselves, those early sufferers are just hitting their two year anniversary and new members are joining just fresh to the discovery that children can and do get Long Covid.

I answered a call on the Long Covid Kids FB support group for anyone with education experience to help with some template letters. Joining the Long Covid Kids team has been the best thing I have done. I wish I didn’t need to, but I feel privileged to be an educational psychologist and wanted to be able to share my skills and knowledge of school systems and to give something back to other families at the beginning or different stages of their Long Covid journey and for whom this is a new or unfamiliar system.

One of my friends told me that this might be a career altering moment, but at that point I don’t think I fully understood quite where this might lead me.

The thought of working with a new and evolving organisation (now a charity), furthering my knowledge and embracing new opportunities was exciting yet exhausting (alongside my own Long Covid and part-time Senior EP job), but I love that it gives me the opportunity to do something that I have control over when so much of my life feels out of control.

I love that I can use my existing EP skills such as consultation, eliciting pupil views, training and research, and that there are the opportunities to develop new knowledge and skills. I am excited that I have set up bookable consultations to support parents and school staff and to have the opportunity to do training, write and research and have been able to attend a blog writing course.

I am also keen to raise awareness for educational professionals such as EPs, teachers, ELSAs as well as to support parents and school staff to support children. The numbers of children with long covid are increasing in the wake of the most recent omicron wave, but this is not widely recognised yet. Prevalence figures vary depending on the study and the research methods employed, but according to the Office of National Statistics (ONS) there are currently 119,000 children and young people living with Long Covid; 21,000 of whom are still experiencing symptoms 12 months after their initial infection (March 2022). Likewise, the ONS COVID-19 Schools Infection Survey (February 2022) found that since March 2020, 1.0% of primary school-aged pupils and 2.7% of secondary school-aged pupils met the criteria for having experienced long COVID affecting daily life for 12 weeks or more. These children will need the support of their school to manage aspects of their learning and wellbeing and those parents and schools may need the support of an EP.

Working with a group of non-psychologists has been a valuable experience and has made me reflect upon what psychologists and non-psychologists bring to an organisation. Collaborating with and talking to other parents with similar experiences has been affirming and reassuring (although heart breaking) and has definitely developed my empathy when working with parents trying to navigate a challenging system (I thought I had empathy, but I definitely have more now).

Through Long Covid Kids I have met another EP who is also a parent to a child with Long Covid. Talking to her has been invaluable, she understands and we speak the same ‘EP language’. Without our shared experience of parenting a child with Long Covid our paths may have never crossed and I am sure we will keep in close contact now that we have found each other (we may even write a journal article together at some point!). I am also enjoying working closely with an Occupational Therapist and learning more about her role in supporting children to return to school following a covid infection.

All such useful learning opportunities and experiences, but I wish I didn’t have to.

Recent reflections

In the last month or so, for the first time in over a year, I have felt accomplished, proud, useful, strong and as if I had achieved something. Without wishing to boast, in the last year, I have set up my own psychology company, written 2 articles (this is the third), written content for the Long Covid Kids school support guide (which I am about to deliver to 10 Downing Street with some amazing Long Covid parents and children), developed 5 padlets-worth of resources and established a process to be able to offer bookable consultations to parents/ carers and school staff. An unusual but welcome feeling as for the last year I have felt out of control, that I was not achieving anything and at times even barely coping.

I have shared what I have written here with my daughter. She was already aware of some of it; I do try to model that it is ‘ok not to be ok’ but I also want to protect her from some of my overwhelming feelings. She has told me that she doesn’t want me to feel guilty as she could have got covid from anywhere, at any time in the last two years. I know she is right and I am learning to accept that as an unhelpful irrational thought. We talk, she keeps a diary, she has a gratitude jar and she has an amazing group of friends that I know she talks to and who do a great job of supporting her.

I have also reflected about how I feel about sharing these reflections with the EP community online. It feels quite personal and exposing to share what has happened to us. At times the words flowed, at times it was difficult to express what I really wanted to say, but I think it has helped me to get some of my feelings out and down on paper and I hope that they may help others to understand the impact of Long Covid.

I am also so unbelievably proud of my daughter for the resilience she has shown, for the pain and sadness she has endured, for all that she has missed out on, for her uncertain future and for coping with this day in and day out. I know she will be stronger for it, but I wish she didn’t have to be.

About Long Covid Kids

Long Covid Kids (LCK) are the first UK-based, international registered charity advocating for and supporting families, children and young people living with Long Covid. The charity focuses on recognition, support and recovery and has already received recognition from the NHS and the US Centre for Disease Control (CDC), as well as being a recommended resource in the new NICE Long Covid guidelines.

The Long Covid Kids Team have launched a new Long Covid Kids Support Guide: “Shining a light on Long Covid in Children. A Guide to Recognition. Support. Recovery.”

It is free to download and available now (Access to the guide will require free registration)

To accompany the Support Guide a dashboard of five padlets will be available containing further useful links to articles, resources and information for:

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