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.”

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.

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.

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.