Family experiences of Long Covid

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

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.

We’d already heard it, but we hadn’t acknowledged it as much but then after she had been properly diagnosed for it we researched it more and looked into it more.

So, do you think as a family you were worried about Long Covid before your mum got it?

Not as much, mainly because we didn’t think it applied to us, so we were shocked ourselves when we got Covid because out of everyone we knew we were, we practically locked ourselves in our house except for my dad went to work every weekend so we were just shocked and then we didn’t consider Long Covid because we thought we’ve got Covid you’re going to die straight away [laughter].

Yeah so then we just practically focussed on living our last days well and then I didn’t study at all because I thought like what’s the point of studying in my last days. And then the Long Covid came after a few weeks and all of us survived then it’s like another worry that, you know, like the hill went down and it came back up again because of the Long Covid and they were like panicking and like this is really serious because she had a lot of health problems from before anyways, yeah.

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.

It’s not until like January 2022 that we’ve now realised it’s probably long, it’s Long Covid and that I’ve been, my Mum’s been in contact with lots of people from the Long Covid Kids and we’ve been doing lots of about it like through there that, which was helpful, but yeah, it was, it was, it’s weird not knowing ‘cos I didn't know until a month, two months ago that it was that we thought it was Long Covid.

It’s been this year like since December last year, January this year that we found like the Long Covid group page and like my mum’s been talking to a lot of people about it that we realised it could be that. But it was spoken about like last year just after having, after having Covid in September. But, but yeah, I thought it would make my existing condition worse than it did. And no one, no one had suggested Long Covid until we suggested it. My mum had been speaking to a lot of people and found out, when we found out about it.

It wasn’t until like April 20-, it was after they’d gone back to school, after the lockdown in 2021. So, when we really, really noticed the fatigue kicking in, after she’d been back full time for a couple of weeks, that’s when we went to the GP.

I’d started reading up about Long Covid and thinking well, hold on, that fits, that fits. She’s got that too. So, I actually rang the GP and said, ‘Could this be Long Covid?’ She said, ‘Yeah, it could be.

I thought either he’s... you know his immune system was low and he’s just picking up on things, but then in January I find this group charity on Facebook—and I start reading the stories there, and it just hit me that’s exactly what we're going through, you know all those symptoms actually, what they were mentioning, I realised that’s what it is, so that’s when I then demanding to see paediatrician, because then he had the high fevers, and again migraine, and body ache, and I knew that... I could see the pattern there— that it was repeating then.

You know always... it was always in the back of your mind, ‘what is this... this is what it is,’ but by then when I read all the stories on Facebook of other parents, I knew, I just knew that that’s what it was, their children were going through similar journeys, you know slightly different symptoms at some point of course, but the majority was the same thing there, and that’s when you realise you know it’s not that he’s just picking up virus, but there might be more to it.

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.

Well, it was before I had it. I’m not sure when, but I just thought like “Oh, not many people have it” and like, “I’ll never get Long Covid.” I didn't understand what it could be, like I thought it was just people that sort of had Covid for a long time and sort of, I don't know. They have to isolate for a long time. But then. I just, then when I got it, I realised it’s not that you actually have Covid, it’s just your symptoms last for a long time.

Yeah. And when you knew about it before, were you worried about it at all or did you just think—

Not really, I just, I just thought I’d, I’d never get it.

And what made you think you would never get it?

I don't know ‘cos I’ve heard stuff like children don’t get badly ill from it, stuff like that.

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.

Well, my own GP, she pooh-poohed it at first and kind of said, ‘Oh no, children don’t get Long Covid.’ And I said, ‘No, I can assure you children do get Long Covid. And with all of [older daughter]’s symptoms, I think that’s what it is.’ And she said, ‘Well, I need to, as a doctor, I need to test. I do lots of different tests.’ She had tests for cancer. She had tests for, you know, it was horrific time, which obviously it all came, thank God, came back clear and everything. And she then said to me, ‘I think you’re right. I think she’s got Long Covid.’ Mother’s intuition.

And then in the hospital they... he... it was on his notes, he’s got post-Covid syndrome. It... it just took such a long time for it to filter through that he’d got post-Covid syndrome, and then finally, like, the consultant that came round, the paediatrician, she said... we’d started talking about... post-Covid syndrome, and she said, “We’re just seeing so many children now with respiratory infections who just cannot shake...” after Covid, the... you know, the lung the lung issues, and on our... on our ward there were loads of kids with, like, breathing difficulties, coughing, you could just see them barking like dogs.

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.

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].

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.

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.