The double invisibility of Long Covid in children, 2024, Wild et al.

The double invisibility of Long Covid in children
Wild; MacLean; Nettleton; Hunt; Ziebland

The Covid-19 pandemic has been dominated by discussions of mild and short-lasting cases or acutely serious or lethal forms of the disease; less attention has been paid to long-term Covid-19 symptoms (‘Long Covid’), particularly in children.

This analysis of the experiences of children and adolescents with Long Covid, and those of their parents/caregivers, argues that children with Long Covid encounter a ‘double invisibility’ due to the condition’s limited social currency and their status as the youngest members of society. We draw on 39 narrative interviews about children’s and adolescents’ experiences, conducted in 2021–2022 in the United Kingdom.

The occurrence of Long Covid in children challenges key aspects of a dominant pandemic narrative, some of which have persisted from the early stages of the pandemic into 2023. Analysis of our qualitative interviews demonstrates that participant experiences were shaped and undermined by the convergence of three elements of the dominant pandemic narrative: that Covid-19 is mild, and everyone recovers; that children are not badly affected by Covid-19; and that worst of the pandemic was essentially ‘over’ as early as 2021/2022.

In the face of these characterisations of Covid-19 experience, young people and their families reported significant additional challenges in making the illness experiences of children and adolescents visible, and thus in gaining appropriate support from medical and educational professionals. We interpret this in relation to ‘social currency’ - the extent to which an illness elicits understanding and acceptance by wider society. Children and adolescents with Long Covid struggled to signal the severity of their condition and elicit care in the manner expected for other debilitating illnesses. This was exacerbated by assumptions and stereotypes about unwell children and adolescents, and their parents, and questioning of their candidacy as reliable, trustworthy patients.

Link | PDF (Social Science & Medicine)

 

I think there’s also a lot of people who kind of psychologised it. So, instead of looking, looking at a patient and wondering why suddenly this 16-year-old’s gone from sprinting up mountains on a bike to not being able to get up the stairs, they are being told that he needs to see a psychologist […] The symptoms don’t fit into an easy box with a label. And doctors tend to put it into whatever box they know that seems to fit, which might be anxiety or chronic fatigue syndrome or something like that. – Margaret, mother of teenager with Long Covid​

One parent described how, after a psychiatrist dismissed their concerns, saying “Get going and get home!”, she became “hardened” and less sympathetic towards her daughter. Several participants were concerned about others thinking they had Munchausen’s syndrome by proxy, such as Olivia, referenced earlier, and David, who reported:

“I even spoke to the paediatricians and said, “Look [er] I mean, there was quite a lot of symptoms there and I don’t want to come across
like I’m a complete nutter of a patient” […] I was coming in as a major somatising [sic] disorder by proxy, like, I was getting worried and eventually, over the whole of last year it did cross my mind that, “Am I going to be investigated by the Social Services for Munchausen by proxy?” [laughs] […] the thing was, fortunately [my son] was in a hospital in agony and with all these symptoms that [the paediatrician] could see that, you know, that we weren’t making it up, but you just start having these strange thoughts when you’re at home and you’ve got nothing else to do, because you’re not working, and you start worrying that “Am I coming across as that as a parent?”, you know, and that that sort of thing obviously did cross my mind.” David, father of a 13-year-old with Long Covid​

This awareness and concern about Munchausen’s syndrome by proxy demonstrates the ways in which parents reported feeling like they walked a fine line between presenting themselves to healthcare professionals as a responsible parent who is concerned about and advocating for their child, and being seen as an unstable, overprotective and over-anxious parent. Parents balanced the strong felt need to signal severity, with not coming across as a ‘mad mother’ (Olivia), or ‘complete nutter of a patient’ (David). Long Covid’s lack of social currency exacerbated this.

Overall, parents grappled with combatting the persistent idea that Covid-19 did not affect children, alongside common disparaging stereotypes about adolescents (and parents), at times even questioning their own legitimacy.

 

The presumed absence or rarity of Long Covid in children combined with the lack of currency of Long Covid meant that children stood at the hinterland of candidacy for Long Covid recognition and healthcare, which became an increasingly distant, marginalised territory. Conversations with health professionals who could affirm their candidacy could be extremely fragile. This was especially apparent in accounts of how (parents of) children in such a precarious position described their conversations with health professionals. For example, David, a GP, said that the way the pain clinic team dealt with his 13-year-old son’s symptoms was ‘just vile’ and ‘patronising’.

They were really condescending, they talked to him like he was, like, a seven- or eight-year-old, you know, it was just in baby language and everything else, and it just made things worse, I mean, it basically made him suicidal […] my son was going on about her going, “I hate talking to that woman, she just makes me feel like a baby, treats me like a child and just keeps going on about how great she is,” and they did nothing but make him a million times worse. – David
​

For some reason I imagine David lives near Bristol...

 

This is yet more evidence of systemic abuse and neglect. Knowing the source of the initial infection clearly makes no difference!

"Some participants attributed this dismissal to health professionals’ inability to explain, manage or treat their debilitating symptoms, and so relegating them to the psychosomatic realm in the absence of any other explanation. David, a GP himself, remarked:

Some of the doctors will go, well okay, well, if they don’t know what it is, it’s anxiety, and that’s what it is, so basically well, all the symptoms, because it’s a multisystem – “It can’t be real, it’s got to be all coming from your head and you’re making it all up” type of situation – David, father of a 13-year-old with Long Covid
​

Similarly, Margaret commented:

I think there’s also a lot of people who kind of psychologised it. So, instead of looking, looking at a patient and wondering why suddenly this 16-year-old’s gone from sprinting up mountains on a bike to not being able to get up the stairs, they are being told that he needs to see a psychologist […] The symptoms don’t fit into an easy box with a label. And doctors tend to put it into whatever box they know that seems to fit, which might be anxiety or chronic fatigue syndrome or something like that.
​

Margaret, mother of teenager with Long Covid

As in the example above, several participants resisted the implication that adolescents with Long Covid were simply trying to get out of doing things (Maclean et al., 2023). They emphasised they had lived full and active lives before becoming unwell.

Yet Emelia said that her friends thought her “lazy” because she needed a lift home from school instead of walking. Aisha thought her friends “think that, like, I’m just not going to school because I don’t want to […] I liked going to school, like, I never had a problem with it.” (Aisha, 15-year-old with Long Covid).

David resisted the idea that his 12-year-old son was a “hypochondriac”, emphasising that before getting Covid his son was “mega fit” and enjoyed playing lots of sports. … they think you’re just probably making it up, but when you sort of say, “Well, my son’s been going though it as well,” you know, and he’s an 11-year-old, 12-year-old, they’re not going to be hypochondriacs and making things up like that when [he is] mega fit, you know what I mean? -

Despite such assertions of evidence of the reality of Long Covid, adolescents reported feeling dismissed and sometimes denied care, making it difficult to resist this minimisation, and their treatment as ‘unreliable’ candidates for Long Covid (Au et al., 2022), which some referred to as ‘gaslighting’."

 

It's certainly her style, she talks to adults like that as well, I know I've been on the receiving end of it.

 

Medicine is the central bank of this currency. They are the ones withholding it here, stop blaming broader society for your profession's failures. None of this is accidental or organic, it's been a deliberate choice for which the horrific consequences, the same exposed here, have long been documented. This "let's not blame the people responsible for this" approach is terrible.

 

So sorry to hear that you've experienced this as well.

 

One of the authors has done a thread on Twitter:

It can be read by anyone here:
https://threadreaderapp.com/thread/1769015525642834258.html


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Society's low tolerance for illnesses that do not resolve and/or defy explanation means that encountering the experiences of people with Long Covid can be jarring, challenging, and disturbing – a threat to society's collective ‘triumph’ over Covid

Children w LC stand at the 'hinterland' of candidacy for sick care. They exceed their accepted stay in the ‘kingdom of the sick’, encounter disappointment from healthcare professionals, teachers and peers in response to disclosure of their continuing Covid illness

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Myself and many others @MEMarge - I was in the adult service she oversaw at Bath. I didn't warm to her on my one and only meeting with her, couldn't put my finger on why at the time.

Dropped like a stone 48hrs after their 6 week course of APT and their mindfulness version of CBT, the year the PACE Trial was published, and never got up again.

I've been looking over the treatment the children received during the MAGENTA trial published in the paper recently released. To my eyes, it looks exactly the same - just substitute school work for adult on a phased return to work at the same time, and bingo. Same impact. I even remember the 'bus' analogy from my treatment received 12 years ago, mentioned in the MAGENTA paper. My heart breaks for what these kids will be going through and the frustration of their parents.