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‘Exhausting & Painful'. Children & Young People Describe Their Long Covid

Updated: Apr 3, 2022

For the many children and families affected by Long Covid, Long Covid can seem like the elephant in the room. The 119,000 children and young people living with Long Covid (Office of National Statistics) want to tell you how it feels and what it is like for them.


In this blog, we will explore how children and young people experience Long Covid. If we can listen to their voices and hear what it feels like to have Long Covid, then we can give them a greater sense of control, autonomy, confidence and empowerment and they can help shape any plans to support them.


We asked children and young people via their parents on the LCK Facebook support group to describe their Long Covid in one word. These were their words:


Children Describe Their Long Covid Experience

Children and young people living with Long Covid said that they feel ill, sad, hurt, lonely, dizzy and that they are in pain. They describe that it is draining, exhausting, tiring, scary, horrible and never-ending. The words they used were then broken down into common themes and we also explored some of the physical symptoms in more detail.



Pain and Physical Symptoms


The American Centers for Disease Control and Prevention (CDC) report that children can experience the following physical symptoms after a Covid-19 infection:

● Extreme tiredness

● Dizziness

● Rashes

● Brain fog

● Headaches

● Chest pain

● Stomach pain or upset

● Sore throat

● Mood changes

● Muscle and joint pain or swelling

● Sickness or nausea


The symptoms vary by individual and can affect any system within the body, e.g cardiovascular, digestive, nervous system, respiratory and muscular-skeletal. They can be continuous or come and go.


We looked more closely at the words children used to describe their physical symptoms. Children describe being in pain and feeling shaky, weak, faint, hurt, sick, ‘vomity’ and sore. They described aches, stabbing pains, nausea and inflammation.


Long Covid Kids: Pain




Fatigue


As fatigue is one of the most commonly reported symptoms, we looked more closely at the words children used to describe it. Children describe Long Covid as tiring, exhausting, debilitating, draining and that it makes them feel heavy and weary.


Children Describe Their Long Covid Experience

In addition, when we asked more specifically about fatigue, the children described fatigue as:


It is like someone is pushing me down all the time

It is like I have run out of battery

When I wake up, I feel like I haven’t slept at all

My body is behind held down by heavy weights

I just feel like constantly sleepy and dead

My head feels heavy like I can’t really support it

I feel hollow like my insides have been taken out

I’m too tired to speak

I feel floppy

I feel like I’m about to collapse

My head feels too heavy

I feel dead

I feel like an outside observer of my life, completely disconnected

It is like my energy is leaking out, like air from a balloon

It feels like elephants are sat on my legs

It is like I’ve ran five marathons



Emotions and Feelings

Children with Long Covid can experience anxious feelings caused by the duration and severity of difficulties, a lack of understanding, unknown timescales for recovery, missed school or missed opportunities to socialise. Additionally, in some children, a Covid-19 infection can cause anxiety.


In terms of emotions and feelings, the children and young people described that living with Long Covid made them feel sad, depressed, angry, helpless, broken, ‘meh’ like poo/ sh**, fed up, cautious, rubbish and anxious. They said that it is horrible, scary, boring, and stressful and that they hate it.



Long Covid Kids: Sad



Cognitive Skills and Learning

Children and Young People told us that Long Covid makes them feel dizzy, foggy and that their minds can go blank. They said that they can have constant headaches, that they find it hard to focus or concentrate and are more forgetful. They said that their mind feels like treacle and they find it hard to understand.



Long Covid Kids: Dizzy



Brain Fog

When we delved more into the symptoms of brain fog, children told us:

It’s like my mind is white walls, white ceilings, just blank, like there's nothing in there

It's like having no clue of anything, even not being able to think

It’s like a car that is going down going through the gears getting slower each time but not quite to a stop

It’s confusing

It’s all fuzzy

My brain is like treacle

Trying to turn my brain cogs is exhausting, it’s like riding a rusty bicycle

My brain has drained of everything

I can’t remember what I’m supposed to be doing or what even happened yesterday

My brain is just slow now!

I can hear the question and I can hear the answer but they won’t join up

It’s like a brick wall, a void, there’s nothing there

My brain is broken



Social Difficulties and Changes to Identity

Children with Long Covid can experience social isolation (due to not being able to attend school fulltime, not being well enough to socialise with peers out of school, attending more medical appointments or taking part in less out of school activities or sports clubs). They can also experience a lack of school ‘belonging’ (due to being absent from school for a period of time or not being able to attend fulltime). A loss of identity and changes to sense of self (due to reduced school attendance and not being able take part in social activities, hobbies and sports which previously defined them) can also occur, with a resultant impact on self-esteem.

Children and young people told us that living with Long Covid is limiting and that they miss their friends. They described feeling left behind, alone or lonely, isolated, stuck and trapped.


Long Covid Kids: Left Behind



Long Covid is:

Overall, children and young people told us that Long Covid is draining, depressing, exhausting, scary, horrible, intense, vicious and never-ending.

It makes them feel ill, sad, hurt, lonely, dizzy and they are in pain.



Many will have been disbelieved or had their physical symptoms dismissed as 'just anxiety'. Please listen to them, believe them, ask them what will help them and support them and their families.


Links and Further Information


Long Covid Kids Charity

Long Covid Kids: Dr Sue Peters, Educational Psychologist

Dr Sue Peters

Educational Psychologist

29th March 2022


 

About


Long Covid Kids Charity

In 2021 Long Covid Kids became the first UK-based, international registered charity advocating for 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 Centre for Disease Control in the USA, as well as being a recommended resource in the NICE Long Covid guidelines.


Support Our Work


While children are living with life changing symptoms and families struggle to seek support, we need to be here. Your donation will be used directly to support families living with Long Covid. Find out more about our Impact.




Our Mission


Purpose
  • We believe all children should be able to thrive and look forward to a positive future. That is why we represent and support children and young people living with Long Covid and related illnesses and the parents and caregivers that look after them.

Our Vision
  • To achieve recognition, support and recovery for Long Covid and related illnesses in children and young people



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