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.

She just kept feeling tired and from the day she got Covid she had really bad headache and her back was hurting really bad as well and that never went away so she still had a continuous headache and the severe back pains. And basically, her symptoms just kept going on and then more and more symptoms, new symptoms kept popping up, such as rashes and the fatigue stayed, aching, aching muscles her legs and that hurt, her legs hurting. From the moment she got Covid she had really bad insomnia and just couldn’t sleep at all one night we was up and she was just getting beside herself and crying until half past four in the morning.

So that was quite challenging just really struggling to sleep and the more tired she was the harder it was to get to sleep. That continued for months until we got some medication to help her sleep.

When did you think ‘I think this probably is what she’s got’?

Probably as time continued and went to see the physiotherapist and he said it’s more a fatigue issue probably just seeing Freya every day struggling just getting worse and deteriorating and the less sleep she got the worse she got and probably, I probably knew but you don’t want to admit it to yourself, you’re in a bit of denial as such probably knew by November really if I’m honest with myself or had some idea in my mind that that’s what it was

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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.

So, she contracted Covid in March ’21. She was quite poorly, she needed some medication, she needed some antibiotics because she got a secondary infection in her lung at the same time, and she never really was well after that, and so… backwards and forwards to the GP, it… it was… we were just told, you know, oh well, it takes time to recover, you know, give it a little bit longer so that… you know, then a week, and a month, then… so I guess from day one I kind of realised, oh OK, well, this isn’t going away, this… this is something that… that just… you know, she is continuing to cough all the time, constantly kind of clearing her throat. There was a definite issue where she just didn’t recover.

So yeah, I guess sh… I knew straightaway, you know, it’s… it’s hard to kind of pinpoint a… a specific time because she just didn’t get better.

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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.

So, I think it was like a day or two after I had Covid, I started getting really tired just, like walking to like the bathroom, and I was like, okay maybe it could be that you know I just had Covid, I get told that you like get tired easily. So, I thought it was that but then, obviously at home we had that oxygen the oxygen whatever it was, and we checked it and my heartbeat was incredibly like high. And so then, I think like [umm] it got so bad that I even took like a couple of days off from school because I couldn't breathe properly as well. But then my mum made an appointment with the GP, and they said, oh you have postural tachycardia syndrome. Oh okay, we didn’t know this illness and their like oh it’s an after effects from Covid. So, then we found out what it was and then I just tried like – it was so hard because you can’t really do anything to like cure it if you get what I mean.

So basically, I was a bit like ha. Like what? I had never heard of it in my entire life. What is it? It sounded really fancy and I got a bit scared. I was like what postural tachycardia syndrome, that sounds very scary, but they explained it very well. Very nice of them. They were like it will stay for like a couple of months 100%, but she was like, do your best, don't do too much, like hard, vigorous exercise, don't do too much stuff, drink a lot of water and everything. I was like okay, yeah. So, I got better like. At first, I was really scared because I was like oh this sounds very like…very concerning. Like no, it's just like, you're going to be okay, it's nothing too bad, you'll be fine. I was like okay. I felt a bit better after that.

I can't remember exactly what he said, but he said it's not like a rare thing. This does happen to some people after Covid. It happens to people after Covid and I was like oh, because I didn’t really expect it because normally I'm pretty healthy in general. Like I didn't really expect to have a long side effect. I was a bit like, okay, this is a bit weird, but it was alright after like. When I first found out that I had it obviously, but it became alright after like. I came to terms with it, if you would say yes.

Was it the first time that you had heard that people could have long term effects from Covid?

I didn't have like short term effects, like two/three days, like feel tired, their legs would hurt, they’d feel a bit dizzy, but I didn't know like, as long as these many months I’ve already got effects would go on, so I was a bit like shocked and interested to hear about that. It was a bit, yes.

Yes, because I guess there wasn't much like the messaging about

Especially in children. I thought maybe like adults would have more like long term effects and I heard that children have it as well, I was like, okay that's kind of interesting.

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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.

It just kind of continued on. So, at some point, I went on, I was on Twitter and I think because there was a guy that my mum was watching, Garner? Yeah, who’s now like, he’s kind of gone off, you know, a little bit odd. But, anyway, at the time, he was talking about the symptoms going on and on and my mum had seen him on TV and she said, “Oh my god, this is it.” And then I went onto Twitter to find him and then to see what else was going on and that’s when I heard about Long Covid. And, in fact, the, one of the women who designed the term Long Covid came up with the term, so it’s kind of a weird, you know, like one of those weird coincidences [laughs]. But you know, then I started, you know, I read and I just thought, no, this is, this sounds very familiar. But there wasn’t a whole lot of talk about GI issues because most people on Twitter were adults.

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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.

I was never worried about getting Covid really badly and being really ill with it and getting Long Covid because you know I thought, ‘well, I’m young and I’m fit and I…’ you know, I was more worried about getting it and then passing it onto someone more vulnerable than me, so it was really a shock when I got it so badly and when it continued on, and I think a lot of people, at least my age, aren’t really worried about Long Covid or getting Covid badly because I think a lot of people first of all don’t understand it, but also just don’t expect it to happen to them.

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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.

Between the first and the second visit he woke up in the middle of the night and he was kicking. He was like twisting his body. He was like smacking his head back on, in in the cot and I was like, “Oh my god, he’s fitting.” But he wasn’t. He was wide awake. He was crying. He was agitated. And the only thing I can think of because, even though the Covid specialist at the hospital said, “Oh I’ve not come across that. I don’t think kids have such symptoms because babies normally are fine.”

But then they very quickly realised that he’s one of the exceptions and maybe other children have it or babies have had it and the symptoms have been overlooked because they’re not the common ones we’re told about in the media. So straight away in my family we were all like, don’t go by, babies don’t get it, kids are safe, because they’re not, you know. And for a lot of people around me, that actually changed the way they then, you know, went around their daily business but, in the end, we got the results back from the camera down. They said to me that they couldn’t see anything so there was nothing clogging him, so they couldn’t explain why he, his chest and throat were all so noisy. And the only thing, even now, they say is it’s all Covid. It’s all Covid related because there was no, nothing congesting his nose or nothing like that.

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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.

Mum: Well, it was… and particularly in the beginning because you didn't know how long you were going to be ill for, did you? That was what was upsetting, is you… there was nobody could tell you… like with your other illnesses, people could give you a factsheet, couldn't they?

Abigail: But with this one nobody really knew anything. Not… so all like… like it was really strange because with like my ADHD diagnosis I was like I could ask the questions and they would answer my questions—but when my like Long Covid like diagnosis, they were asking me the questions and I'm not used to that, so that was very scary.

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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.

So, I think we’ve just felt rather belittled and fobbed off for the whole journey with a very, very sick child, and we’ve been given some diagnoses which have been sort of full stops, like functional pain, full stop. You know I’ve been… I managed to secure some contacts through people I know, doctors who have children with Long Covid, and those have been extremely supportive and they’re echoing things that we have said as well, and the Long Covid Kids has… this has given me more support than any conventional NHS pathways. So, it’s been really down to us to navigate her care in that way—

And that’s been the major stress: are we doing enough to nurse a sick child day and night? You know a sense of not being believed that she was ill, that I was being an over-reactive mother, that she wasn’t that sick, when she was, and she’s described as one of the most severe Long Covid cases by the doctors I’m speaking to who have Long Covid children, have acknowledged [incredulous laugh].

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

So I, sort of, went, went to the GP’s and they said, “Well, OK, we’ll see you in the red, in the red zone,” so on we were on week 6, 7, well after Covid and, sort of, felt like we were being treated a bit like, you know, you’ve got the lurgy, but it was like, well hang on, we’re, we’re weeks beyond any illness, we’ve not had an fever, and then the GP was, like, going, “I don’t know what’s wrong with you,” and I said, “Well, what are you going to do about it?” they said, “I don’t know,” I said-, well, basically I had to have a massive go at the doctor and say, “Well, do you not think he’s screaming in pain, you saw him outside, he couldn’t do the, walk for 20, 30 meters to check the oxygen levels,” his stats were, like, 94, 95: for a child they should be, like, 98, 99, “can you not see that that’s wrong? I know it’s still a normal limit but nevertheless he’s screaming in pain holding his chest, are you not worried enough that we need to go to see a paediatrician?” “Oh, I’m not sure; I’m not sure, your ECGs are all fine,” I said, “Well, what’s the diagnosis then?” and he couldn’t give one, so I said, “well, perhaps you should get on the phone to the doctors right now, check the [inaudible] specialist and we’ll go into the children’s assessment unit now.” So, I mean, he did that, and I said, “Well, why can’t you-, can you do something for myself as well because I’m still, I’ve still got symptoms,” and then he never got back to me, so I didn’t hear anything
 
I got a phone call a couple of days later and then a few more phone calls with the consultants and we arranged for him to have an echocardiogram done. So, he had another ECG, an echo, we went back in and that was fine, but when we went back in for that, we saw the middle grade doctor who went through all the symptoms again, told us it was anxiety related. He was a nice, nice guy, very polite and said, “Oh, it’s probably just anxiousness, you’re just getting stressed and worried,” and sent us home.

 

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

Lucy: We went to a paediatrician. And we kind of, we told him about all my symptoms and about me being like really tired at school and I couldn't manage full days at school. And he booked an MRI to see if there was an, if there was anything wrong with like my head and my brain and stuff because I was having constant headaches. There wasn’t anything wrong. But he, did, didn’t I, chronic fatigue?

Mum: He said it, he thought it was post viral. He said it was either post viral fatigue or a depressive episode.

Lucy: He didn't think maybe it would’ve been both of them. He was wasn’t very, what’s the word [laughs]? He wasn’t very nice, and I don’t think he kind of—

Mum: I think he was trying to be nice, but he was a bit patronising. He was a bit, he minimised your—

Lucy: He compared me to other people like he said, he was kind of like he was saying I was being dramatic. He compared me to a girl that had she had lost her ability to walk. She was in a wheelchair. She, she was paralysed. And he was kind of, he was comparing my problems to hers. And like they’re two completely different things.

How did that make you feel?

Lucy: It made me feel like I was making it up, even though I wasn’t ‘cos I was feeling it. It just, it didn't make me feel nice. It made me feel like if a doctor is saying like I’m being dramatic and stuff and obviously, you know, there shouldn’t be any help. Or something. I just, I need to get a grip. Yeah, he was also quite, he wasn’t really taking into account that I was kind of a child and some things I would take the wrong way.

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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.

Yeah, I think for it to actually it felt, in a weird way it felt quite good for it to be acknowledged and kind of it just made, it made sense and it felt good that like I went to the physio and they acknowledged I have Long Covid and my clinician said it was like going off as like post viral syndrome or I had chronic and I’ve been told chronic fatigue but. Yeah, it was, I don’t, I don’t know it was kind of, it was, see those other people, all I speak to another person who has Long Covid and just to like see it, have other, speak to other people and see that other people are going through similar things who have it as well. It felt, you know, in a way good, but it felt it was nice to know that it’s not just me and that there is actually like. It is something. It’s not in my head.

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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.

Do you feel like you have a claim to the term ‘Long Covid’?
 
For my daughter?
 
Yeah.
 
Yeah, I mean… yeah, it’s just that thing of… of being so aware of how badly other children have been affected and thinking, ‘well, you know, she’s not that bad,’ so… so do… do… do I have a claim to… to using that term. But… and maybe part of that is that I don’t… like part of me wants… really wants to recognise that yes, she’s had this illness and she’s had this experience as a consequence, and part of me, like, just wants to think that she’s fine and, like, not call it Long Covid because I don’t want to think of my daughter as, like, and I’ve always tried not to give her a sense of herself as like, ‘I am a sick child,’ or ‘I have an illness,’ or ‘I have a condition,’ like, I don’t think… I think she thinks of herself as healthy, do you know what I mean?
 
So, like… and we’re lucky that she’s not so badly affected that she damn well knows she’s sick, like she… you know she… she thinks of herself as a healthy child at the moment. Yeah, she can’t taste certain things properly and the doctor listened to her heart and said this thing about there… but she doesn't know what a heart murmur is and we don’t tell her, ‘huh, you've got a heart condition.’ Like, she thinks of herself as a healthy six-year-old child, so yeah, part of me is resistant to the… to calling it Long Covid because I want to have a healthy child, and she believes she’s a healthy child, so there’s a bit of tension around the… the name for me, yeah.

 

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Family experiences of Long Covid

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