Realisation of Long Covid

Here we describe how the people we spoke to realised that one of their family members had Long Covid. This section includes the experiences of families where: both a parent and a child had Long Covid; a child or a teenager had Long Covid; or a teenager was caring for an adult with Long Covid.

This summary covers:

  • When and why people suspected or realised that they had Long Covid
  • How people found out about Long Covid
  • Difficulty obtaining a diagnosis

Adults’ speaking about terminology used for Long Covid can be found on the ‘Long Covid in Adults’ section.

When and why people suspected or realised that they had Long Covid

The process of recognising Long Covid was typically gradual, slow and drawn-out. Some people had, at least at first, not been aware that what they were experiencing had the name ‘Long Covid.’

Emma B said she was initially in denial about her daughter Freya’s ongoing symptoms.

Looking back, Beth said this made it hard to identify when and how her daughter’s symptoms had started.

Teenager Mehjabin described how a sense of relief that her mum was through the acute phase of Covid-19 then gave way to a second wave of concern about her chronic symptoms. Parents, including Emma B, were sometimes unwilling to recognise and confront the chronic nature of their child’s symptoms.

It was hard for Beth to pinpoint when her daughter’s Long Covid symptoms started.

The experience of symptoms usually prompted attempts to obtain a diagnosis and treatment, which usually meant consulting a GP or a Specialist.

Teenager Amal felt that the hard thing about Long Covid was that you can’t do anything to cure it.

How people found out about Long Covid

The existence of Long Covid only became widely known several months into the pandemic in 2020. Those who realised that they had Long Covid had usually heard other people talking about it or learnt about it from mainstream media descriptions. Some told us that they had researched the condition themselves, reading about it online. Facebook and other Long Covid social media groups were described as  particularly important in the journey towards recognising Long Covid symptoms and seeking help.

Katie’s mum heard about Long Covid on Twitter.

Social media groups seem to have been particularly important for families because for many months mainstream sources maintained that children and young people suffered less significant and long-lasting health impacts from Covid-19 than adults.

Teenager Evie described how the portrayal of Covid-19 as more concerning for older adults made her worry more about older family and not see herself as at risk of Long Covid.

Difficulty obtaining a diagnosis

Several of the people we spoke to thought that recognition of Long Covid in children and young people had been obstructed by the lack of knowledge or understanding of Long Covid by the medical profession.

Razia was told by a hospital Covid specialist that children do not have Long Covid symptoms.

Teenager Abigail found it uncomfortable that, whereas medical professionals could answer all her questions about her ADHD, they didn’t have any answers about her Long Covid.

Teenager Abigail wished there was a factsheet about Long Covid, but nobody really knew anything.

Especially at the beginning of the pandemic, the gaps in knowledge, or understanding, of Long Covid meant that many people we spoke to felt that they had to be very persistent with doctors. Some said that the symptoms of Long Covid had been dismissed or belittled.

Sasha felt belittled and fobbed off by the medical profession over her daughter’s Long Covid.

Richard, a doctor, described his son’s symptoms being ignored by doctors or attributed to anxiety.

A paediatrician made Lucy A feel like she was being over dramatic.

Getting a Long Covid diagnosis, sometimes after considerable struggles, could be seen as a positive acknowledgement of the reality of what they were going through.

Teenager Jasmine saw the Long Covid diagnosis as a relief, as it meant it wasn’t all in her head.

By contrast, Francesca was ambivalent about the diagnosis, part of her wanting to recognise that her daughter has this illness and experience, but part of her wanting to conceal it from her daughter.

Francesca described ambivalences and tensions over her daughter’s Long Covid diagnosis.

Family experiences of Long Covid

This section is one of four studies on Covid in the UK published on Covid-19 is an infectious disease caused by a virus known...