Family experiences of Long Covid

I went back to [doctor] and I said, “Look, can it be feasible...” because the... Vinnie had been taken into hospital in June and they kept dismissing Vinnie’s Long Covid as well, and I just wrote him an email and I said, “Look, I want you to just stop for a second and accept the fact that isn’t it feasible that, you know, if I’ve got Long Covid, that Vinnie can also have Long Covid, you know, just for a second, can you just contemplate it?” and he must have, like, read my email as well and gone, “Well, actually you’ve got a point.” And I sent him a video of Vinnie’s seizure and... but it’s had to be done through email, I couldn't do it... and the eConsult system doesn't work for me because it... every time I tick the box, it sends me to A&E, and the same with Vinnie because there’s a consult system and those systems, like, literally, because it says if you've got a headache with  a chest pain, you've got to go to the... you've got to go to the doc- the hospital.

Well, I... like, you know, we constantly live with Long Covid, with chest pains or headaches, or you know, and... yeah. All of our symptoms are such that we’d end up in A&E every five minutes. But yeah, it... it took a lot of those kind of emails I think initially to build that relationship and that grounding and understanding, and I think I just was very forceful of the fact that you can’t dismiss me and you can’t dismiss this with something else, because anytime that... like, every time we went to the doctor’s, we dealt... for Vinnie, we dealt with a different doctor who kept saying things like, “you don’t know it was Covid, you don’t know, you don’t know”, and I would just standby it and say, “This was down to Covid, this is Long Covid,” and... and it... but it has taken a lot longer for Vinnie because  even up till my last thoracic clinic appointment when I said, “And my son’s still got... my son’s got Long Covid, he’s four,” he went, “Children don’t get it,” and I went, “How can you even believe that?”  and that was like a... a thoracic... a Long Covid thoracic clinic consultant.

And I had to say to him, “I can’t believe you think that,” I said, “you need to really have a better understanding because children do get Long Covid.”

So, I think you know, at the beginning of the pandemic it was clearly the older people and people with diabetes and high blood pressure and so on that, that were more vulnerable to severe disease. And it’s, it’s still true that, that children rarely become very unwell with acute Covid. Some do, but not nearly as many as adults and particularly, as you get older and have other illnesses and diseases going on and children tend not to get so unwell.

But children are getting Long Covid and of course, children are also getting PIMS you know the, the multi system inflammatory disease which happens a few weeks after Covid which can be really severe in children, a number of children have ended up in ITU and a few that have even died. So, it’s certainly not something which is benign in children. And if we hadn’t had so many adults dying and being so unwell with it I’m sure the focus would be entirely different. But I think it’s not at all true to say that children are not affected by it and it’s and it’s far more than just being the disruption of education and social life and family life. It’s the actual illness is causing, in disease and problems which are really bad, but not the same rate as adults.

So, I think [our son] is quite unusual in that has severely affected his being. But he’s not alone. There are other kids his age and younger who’ve also been quite unwell. Quite a few that have been unwell enough not to be able to go to school. So yeah, I think it’s something which has been played down quite a lot and, and, and not always taken into account in the decisions that have been made about how it’s all been handled. That’s my opinion [laughs].

Yeah, well you know for instance vaccinating children, you know, the argument is that children don’t get very unwell with Covid. Long Covid was never mentioned when they first said they were going to make a decision about that. And if, and if they hadn’t had so much information about the rest of the effects of Covid then maybe we’d have been a bit more people would’ve been a bit more interested in what was happening in Long Covid. I don't know. 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.

He’s gone from being super fit to not being able to get up the stairs and has all sorts of worries sometimes and chest pain and lack of [inaudible] and palpitations [inaudible]. I think the questions have been answered about why that’s happening. Interesting journey for me [laughs]. Yeah, I think because it’s, 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.

I’ve had a lot of appointments with the GP and a lot of different doctors, and some of them seem to grasp the concept-, concept more than others. So, there was one appointment where the GP said to try and go out for walks a couple of times a day, but I don’t, just don’t have enough energy for that. my physio at the start, was very adamant about the fact that I didn’t get a positive result, so that was, sort of, a bit disheartening because, obviously, he didn’t really believe me in how I was feeling, but then we had more tests done and he seemed to be happier with the fact that they all came back clear. But that was just a bit strange because he didn’t like believe that it was the like a thing and that I had it and I didn’t have Covid and things like that, and just telling me that if it wasn’t a positive result, then it wasn’t Covid, but obviously there’s the tests aren’t 100 % accurate. So that was quite frustrating.

Jasmine: I think lots of people I speak to, I said that I speak to another girl who’s got Long Covid and yeah, all struggling with health, with trying to see doctors, physios, OTs, struggling to see and then, yeah, finding it hard to like put across how hard it is and how it makes us everyone feel. Yeah, it can be, it can be quite hard. I found it quite hard to go and doing that with going to see GPs and stuff ‘cos it almost seems like I just like belittling how I, how I feel or—

Mum: Yeah, absolutely. You don’t, the physio you don’t really want to go on Friday because you think she’s just going to make you feel bad about yourself. So, she’s got to the point where she’s already, you know, not wanting to go. And this is the very person that should be there to help her. So, of course, we’ve had people from Long Covid Kids saying, you can ask for another GP. You can ask for another physio.

Jasmine: But it’s just it’s taken so long to see one, but it’s going to be hard to see another.

And I think for kids, when they can’t tell you what they’re feeling, it is so difficult, and up until now, you know, it has been hell really for us to even try and gauge, you know, what he’s been going through. I can’t even begin to imagine, because the only way that I can imagine is because I know what I’ve been going through, and when I’ve been his voice, sometimes I’ve felt like people have thought, like, she’s got Munchausen’s by proxy, you know, she’s just saying that he’s feeling this or feeling that, and they think that I’m a mad mother, but the only reason I’m doing it is because I feel like I’m the only person that can know what he’s been going through, and now he’s verbalising those things, like his pins and needles, you know, I know what the pins and needles feel like because I’ve had the pins and needles, I’ve got the pins and needles. When he says his brain hurts, I know what it’s like because I have the migraines every week, I know what they... that headache feels like, so yeah.

Do you feel like people look at you differently or treat you differently when you’re out and about?

Absolutely. If I’m in the wheelchair, I’m invisible. Don’t even look at me at all even if I’m talking to them, they don’t look at me. It’s ridiculous. I’m still a person, even, you know, sitting down that’s all.

Have your family been with you when you on those occasions?

Yeah.

What do they think about it?

They don’t say anything. Just wait till we’ve parted our ways and then have a grumble about it… You know, the real well-known Evangelist at a church I went to a couple of weeks ago, very well known. I won’t say his name [laughs]. I was talking to him with my friends that I’d gone with and my son and he didn't look at me once, even though I was talking to him [laughs] and he was so short he could’ve looked me straight in the eye [laughs]. Almost [laughs].

It took a while. It took a long time for them to kind of get it around at the start. They were kind of, I don’t want to say inconsiderate, but they were inconsiderate about certain things like, they would organise stuff and then I’d be like, I can’t do that. I can’t, I don’t have enough energy to do that. I can’t do that. And you know, it’s just they’ve grow- definitely now, they are a lot better with it and they know what I can and can’t manage.

So then like if they organise stuff, they make sure to kind of organise it around what I can do so I can also hang out with them. But yeah, it would be, I’d start  at the start when I kind of went to school part time they would have loads of inside jokes and stuff like that from when I wasn’t there and like we went into town once and I was so tired I left half way through and then like they had loads of, they were talking about what happened when I was gone and how much fun they had and stuff and it, it made me feel really bad. It took, it definitely took them a while, but they’re a lot better now. They definitely, I think they know what’s going on more than what they’re used to.

Like when I came out of school right, when I had Covid twice, I feel like why you’ve had Covid twice. Quite a few people were staying a bit away from me because I had Covid twice, right. Yeah, but no-one - when I’m having leg pain, I think one person that was there was my friend who always asks how I am, how I'm feeling like rest and drink water, do you have fruits.

That's really nice. That's good. And have other people been supportive as well?

Like family members or friends?

Both.

Yeah, family members have been. They’re all telling us to eat fruits, drink water, slowly exercise as well ‘cause it will help, yeah.

Like, almost because it’s not visible, you can’t see it, so they’re like, ‘oh, why do you need to sit down? Why are you going again? What are you do...’ you know, ‘why aren’t you doing swimming? ‘Oh, why do you get to stay behind to not do this?’ or... and I think... they’re only eight, so the under... the level of understanding and the... and the maturity level is very different, isn’t it, to... to that of an older child. So, I think because none of it is visible, it’s very hard for them to kind of understand why she needs to kind of take a break, or why she’s tired and... and maybe a bit grumpy with them that day, or if she’s done PE, it can affect kind of the rest of her afternoon at school and how she sort of responds to people. So that... you know, that has an impact too, but for their understanding, I think they’re... they’re so little still, that it’s... it’s quite difficult for them to... to know what... what it all is and what it’s all about.

Yeah, and has she spoken with you about that?

Yeah, there are times where she said, “People don’t believe me, people think I’m making it up,” so she can get quite upset. She’s... she’s a very resilient child though, so she will just kind of get up and get on with it and keep going. She has her moments of you know being upset and she’ll say, “Oh Mum, no one... no one’s playing with me today because they don’t believe me, they think I’m making it up, they think I’m saying things that are not true,” but said, “but Mummy, I can’t breathe,” I’m like, “I know, it’s OK.”. So yeah, that... that’s been quite tricky.

And what about your peers, or your social circle, how’ve they reacted to it?

Very mixed I would say. Some people have been massively understanding, you know just available to... to chat to and... and really kind of, ‘yeah, we get it, you know, it must be really difficult.’ Other people, again, similar, ‘does Long Covid even exist? Is it even a thing?’ you know, ‘is it not just that she would have been poorly anyway?’ Not really understanding that Covid can do this and that she hasn’t really recovered, like maybe I’m overreacting, you know, do you... you know, ‘are you seeing something that’s not there?’ I guess that was more so before we saw the paediatrician because we obviously weren’t getting anywhere with the GP, and I guess I even felt like they felt that I was you know making it up in a way, and I wasn’t believed until the chest X-ray kind of confirmed, yeah, there is a problem and here it is and this what it is. You know, my social circle can... the attitudes have changed slightly now because that is there, it’s on a paediatric... you know, she’s had a paediatric care plan for school that it’s all official, so I’m not making it up, but it... there was an element of that for a good while.

Interviewer: Do you think people understand what Long Covid is?

Mum: No.

Abigail: No. Like some people are respectful about it and like that’s OK, like because someone just says like... or like if I like... I say to my friends, like my friends are very respectful about it, if they just have an enquiry about like, ‘OK,’ like if they just have a question, I’ll answer it because they're being very like polite about it, but like if someone’s just like not being very polite about it like it’s a... you don't really want to talk to them because they're basically telling you off for something you can't control.

Mum: Like when... when we're out and about if she’s using her crutches or her wheelchair, we’ll get people challenging her—

Abigail: As to why she needs them. And it’s like... it’s... like because people have a very, very like stiff sense about wheelchairs, like sometimes if I'm out in my wheelchair I will stand up to do an activity and then I'll sit back down, and the people don't think that... like people think that if you're in a wheelchair you’re paralysed. Like they don't think that people can be in a wheelchair for other needs other than the fact that they... their legs don't work and my legs work, they just need help working.

Yeah, and the people that have challenged you, is that people you know or strangers?

Abigail: Just people in general.

Mum: Strangers, darling.

Abigail: Yeah, strangers.

Some of my friends have had Covid but none of them have had like... had it badly or had lingering symptoms or anything.

And have they been able to understand what it’s like at all for you?

No, not all. I don’t really talk about it a lot to be honest with them, because I just know that they wouldn't understand even if... even if they tried to, and a lot of the times they’ll just like make a joke out of me not being able to taste things because they don’t... they don’t understand how hard it actually... it actually is, and I don’t... I think like they get annoyed when I talk about it too much because... I don’t know, they just... it’s easy for them to get annoyed when I bring it up once in a while because they don’t have to think about it 24-7.

Well yeah, I think there is a general... a lack of understanding about it. I think like I told somebody that I had Long Covid and he thought that that meant I was still testing positive for Covid, and I think that does just show like no... not many people really... really understand what it... what it even means. And I think generally like there’s a lot of stigma around  like chronic fatigue and things like that, just ‘people being lazy’ like I’ve... even just off-hand comments, like I’ve had friends say that I’m lazy because I get a lift home from school instead of walking you know, even though I used to walk and things like that, and you know like I’m not, it’s just because like I can’t walk home from school because... because I’d probably collapse  half...halfway home, you know [chuckles]? So, it’s just the little things, and just understanding that... that it’s really difficult.

Yeah, I well, I didn't for like a year I didn't really know what it was. It’s kind of hard to explain like I feel all of these symptoms, there’s no real name for it or reason, reasoning. Like, it’s just like I not well. Can’t go to school. But it’s quite hard to not be able like, it’s Long Covid. It was just like, I don't know why. It’s post viral syndrome. I don’t, I don’t really know why I feel like this. So, it’s, it can be quite hard to explain, especially when people don’t understand. I’ve not when people don’t understand it and yeah, I don’t, I don’t really know what my friends thought I was—I tried to explain it, but then, it’s not fun to talk about it to some people that have known me long before this to now like see me, I’m quite, it’s quite different now. It can be, it can be hard to then speak to people like.

Yeah and what were their reactions?

They were, well there wasn’t much of a reaction when my friend I still speak is, yeah she’s nice and she, she helps, she helps me and she’ll keep in touch with me like for a year since August 2020 since I’ve been off school the whole time, which is nice. But I had a group of three friends and some other friends that I’d now just don’t talk to anymore. I’ve fallen, they fell out with me and just didn't really understand my condition and you can try and explain it, but especially when like I didn't really know what it was. It can be quite hard to like if I could say now, it’s Long Covid then it might be like, ah, right, yeah. But to then now to not be like I didn't then, I didn't know what it was. I didn't really like talking about it. I don't know, I just people that ‘cos they’ve known me, they’ve known me for a while that it was, I found it hard to like try, and to talk about it. So, yeah, I didn't really very much.

Like you have what? One of my teachers were like, oh wait, say that again. What is that? And I was laughing ‘cause they were shocked, like they haven't heard of it before either. I was like, yes I was shocked too. They were like whatever, take it easy, don't do anything that you don't outdo yourself. If you want to try PE, try it. Sometimes I would try it and I wouldn't be able to do that. Okay, just take your time. We don't need to like rush into it like. Whatever makes you feel comfortable. ‘Cause this was around the same time that my dad went into hospital as well so they were like take your time, like you have time, you can do it and I was like. Yes. So, I took it very slow back then.

Yes, it sounds like they've been pretty supportive.

They were very supportive, especially the PE department.

Yes. That's good. And how did your friends react?

They started laughing at me [laugh]. They were like, that sounds so weird. Only you could have that. No wonder. You’re so clumsy. I was like guys stop it [laughs]. They were like laughing. Even in my class it was like you have what and they’d be so shocked. I’m like yes. Yes, that's the thing. It was funny. Even my teachers were laughing at me. I was like it’s not something I can control [laugh]. But you know they were very nice. They were very supportive, though.

That my children are, they don’t understand, they ask me if I’ve got Covid still. They say to me, “Have you got Covid?” And then they’ll say to me, “Are you gonna die and when are you gonna get better?” And no matter what I tell them, they still ask me again the week after. They, they just do not understand it at all. And they say, “Why don’t you take a medicine?” Why don’t ya, you know, they just can’t under—it’s so unusual that there’s an illness that you can do nothing about. And I think that’s really hard for them to accept. And school have phoned me and said, they’ve told them that I’ve got, one of me children said I’ve got Covid and should my children be isolating. And I said, “I’ve had Covid a lot of months ago, but they still think I’ve got it, you know. They’re quite confused.

Yes. We have, I’ve tried to talk to him about it. One of the ways that we’ve talked about it is sort of percentages of how much Covid mummy has today which is what we’re doing on the initial days. And every now and then, he’d say, “How much Covid have you got today, mummy?” And it seems to vary. But, at the moment, I’d say to him, I’d say, “It’s probably about 15%, [Son’s name].” So he knows that 100% would be like full on poorly. I’ve got it, but it’s at this really low level. And then sometimes if I’m obviously not feeling good and he sort of says, “How much have you got? Maybe about 19% he’d say, but it doesn't go above 20. So, he knows it’s in that lower section of, of whatever the scale is. And then occasionally, I think I might just say, I think it’s probably maybe a nine today and it’s good, you know, it’s definitely going in the right direction. We’ve sort of got that way of thinking about it. I don’t talk about it too much to him, but it’s his way of trying to understand what it is.
 
I have asked him. “What do you think, what do you think mummy’s illness is?” And he says, “You get tired and need to rest.” I think that’s the most that he knows about it. He hasn’t said any of the other symptoms. I don’t really talk about those. I guess he just sees me sitting a lot. Yeah, actually, that’s the main thing for him. I have said, sometimes the symptoms just get a little bit worse again if I just do a bit too much. So, mummy has to be a bit careful and make sure. And he seems okay with that. I’ve been out in the wheelchair a couple of times with him, and he’s accepted it alright. Has wanted to push the wheelchair and that sort of thing. Yeah, I mean he does, he was saying more initially, earlier on about, “We’ll be able to cycle to school one day, won’t we?” “Yeah, I’m sure we will, [Son’s name]”. But he hasn’t said that recently. I don’t know if he’s getting just used to how it is or maybe hadn't occurred to him to suggest it. Yeah, I think that’s, that’s what he knows about it. He does, he does kind of pat my arm and say, “You rest mummy. I know you need to rest.” He tries to be, yeah kind of supportive in his own way.