It’s just like something’s just blocking my thoughts. You know, I can’t take in English, I can’t analyse anything, it’s like your sort of chain of thoughts is just completely you know broken, like I can’t have more than one thought that leads to another one, it’s just like my brain is just a cement block and it’s just all messed up, I don’t even know how to describe it, but you just… it’s so bad [chuckles].

Yeah, and that must make school very difficult then?

Yeah, it does, just not… not being able to fully focus in class and struggling with the work and then not having the energy to do the homework, at home, because it… especially because like I’ve never really struggled in school before.

Like I’ve always enjoyed learning, but it just… it really stopped all that and… yeah, just… just feeling really like stupid because like I couldn't… I couldn't do the work even if it was work that I could do before, so it really… so then in that way it impacts like you know your self-esteem and… and things like that, and… so yeah.

Yeah, we had to organise and get a letter from the doctor as well, she could not use the stairs, use the lift, and then we had to sort of get that from the doctor, but you always had to do it in the… contacting the doctor at that time, because of the Covid epidemic and there are so many – like it was really hard at that time as well, so I wanted to let you know this is her problem, her heartbeat is… and he said to her it will take a bit of time. Now and then like we tell her not to do too much heavy things or exercise or even when you go for a walk, ‘don't walk too fast, walk slowly,’ I think now and then she takes a cab to school as well, I didn't let her use a… like the buses either, you had to get a letter from the GP to say that you know if she can use their lift, stairs up and down she’s causing, because she was taking time out of a lot of school for this reason as well.

[Daughter] was as well because she was used to getting a lot of pains in her back and her legs as well, so yeah, that was the problem. School-wise it was a problem for us as well. Up until then when you're talking you forget to mention things because you go on a certain topic and then you start talking… but yeah, that one made me think that [daughter] was the most worse to be honest with you, was the first… was really scared for her, because her heartbeat that was going very fast and like jumping up just walking from her room to the bathroom, it’s only like, what, five, six, seven feet and they're like… it’s like we walked… just like, what, a few seconds, we're in one level, and that was a bit scary for us as well.

But yeah, we had to go through that as well, and then the school goes, ‘oh we can't do it without… you get your letter from the GP,’ so that was just… was stressful as well, so we had to try and get the… contact a GP, do this for us, and that, so yeah, that was a bit of a… you know a stressful time for us as well, like we had to get a letter to… for her to use the lifts because it was too hard for her to climb up then going… and walking from one place to another, whatever classroom, so that was a bit… you know…

Lucy: Okay. So, I got Covid in October. I don’t know the specific date in 2020. And it started off with me not being able like I said water tasted like burnt sausages and I felt quite sick. And we went on a walk, and I was, I was really exhausted, and I felt very faint. So, we got a Covid test, and it came back positive. I got Covid quite rough. I got pretty much all of the symptoms. And I was sick for quite a long time. We had to go to the hospital once. It wasn’t anything serious. It was just, I had chest pains every time like when I breathed in. And so, we just wanted to make sure it wasn’t anything serious and it wasn’t. But yeah. I was off school for like three weeks because I was really ill. And then I think Long Covid kind of started kicking in late November. So, after school, I would come home and I would like, I would sleep for ages. And I, I’ve never done that before. School didn't really exhaust me, but it started to. And then, after Christmas, we started online school because you know, there was another like lockdown. And that’s kind of when the mental health start of things, started kicking in. I didn't go to some of my classes, which isn’t like me. I am very, you know, like…

Mum: You’re good.

Lucy: I’m good.

Mum: Don’t wanna get in trouble.

Lucy: No. I always turn up for class and stuff. But I started missing them and I become quite like sad and depressed all the time. I didn't wanna get out of bed in the mornings and stuff. We didn't really notice the fatigue getting worse ‘cos obviously because we were in lockdown it wasn’t, you couldn't really, I wasn’t really doing much. But once I went back to school—

Mum: You started getting headaches as well.

Lucy: I had constant headaches where like they wouldn't stop. So, they would last all day. And they would only get worse or like subtle. And so, we had, so we went to the doctor for that. 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.

Yeah, I was tired. I also was quite, I found it quite, I was quite panicked with it also ‘cos it was, it had only been two weeks, but I still didn't feel right. And it just, Long Covid wasn’t spoken about then. It wasn’t really very known. So, it was, I was told post viral. So, I was like, I just kind of felt like it had been two weeks that’s like, that’s more than enough time normally for a cold. And I was, I went to the GP and they couldn't really test—all I was told was post viral syndrome, they told me it was, ‘cos I was on my phone reading at night, the blue light and it was kind of just saying it was in my head. So, I kind of just felt I almost just doubted it and tried to go back to school and just yeah, couldn't do it. I met my friend before school I went to go in for the afternoon. And, yeah, couldn't, I went like tried to go in for a class. I went in for two classes and fell asleep on the bus on the way home. I just, yeah, I couldn't manage it and so I didn't go back again. I was still trying to do school online from September to November 2020. And yeah, in November I stopped because I was trying to do a full week at school from home while not feeling well and I just couldn't, couldn't cope with it. So, I was removed from all my classes then.

Gracie: Yeah, school…

Interviewer: Were they supportive of that?

Mum: Yeah, do you want to say.

Gracie: OK, what’s [psychologist] called again? All right, so since I go and see [psychologist], my clinical psychologist, quite a lot, she’s the person that gets in touch with everybody in because like, ‘Right, we need this plan,’ like she’s good at doing stuff to do with school, and so I kind of said to her, ‘look, like, I’m really struggling in school like, it’s hard because like, you know.’

Mum: We did Zoom meetings, didn’t we?

Gracie: Yeah, we did Zoom meetings and she was like, ‘Right, I’m gonna sort this out for you,’ but like you can do it but for…so…

Mum: Yeah.

Gracie: Yeah.

Mum: Yeah, we’ll have regular meetings online meetings with [psychologist] and Gracie’s special educational needs teacher now—

Gracie: Yeah, that’s what I’m trying to say.

Mum: And just to be fair, they’ve been really good, she just kind of comes and goes to school as she pleases, but bear in mind, what’s your attendance?

Gracie: 23%—

Mum: 23%, and a lot of that’s-, actually it’s probably wrong because there’s a lot of doctor’s appoint-. hospital appointments, she cannot go to school saying that, do a hospital appointment in the morning and then go to school in the afternoon because it’s too much, it’s either one or the, one or the other, and you have a good run of a couple of days at school, a couple of afternoons at school, and then it’s a couple of afternoons and she can’t that that she can’t go in. I mean the only fault that I would say for school is, and it’s really awkward for them, is she’s had no nothing in terms of support at home with regards to work. And understand that that’s hard because how can you send her in when she’s so fatigued? But a lot of the fatigue is just to do, it’s, your brain can be quite slow, but if you could do work at, at home, I mean Gracie can’t do online—

Gracie: And my eyes aren’t sore, they’re literally —

Mum: Yeah, you can’t do online learning, it doesn't, it just doesn't work for her—

Gracie: It makes, it makes us stressed and I have a timeout pass and sometimes I have to go to the toilet and just cool-down because I get stressed because everyone else is working and you're like looking round and you're like, ‘what, I don’t understand what is happening,’ and I feel like I get on people’s nerves a bit because when I sit next to them I’m like, “What,” and like, ‘Well, you probably missed that,’ but I like I can’t, and I don’t understand what they’re talking about. I’d understand better if they’d send us work home.

I think we’re at a stage now where we’re managing but what we was, it was mainly school before, so what would happen was Freya would struggle, do a day and then she’d be in bed for two days, she’d crash she couldn’t get out of bed, she had pins and needles in her leg every time she stood up she felt dizzy, nausea feeling sick so we was like on a roller coaster of her managing her day, two days in bed then she’d push herself and go for a day back in bed for two days. So that was really challenging because then I was like now I’ve got my childcare in order a little bit but then it was like ringing my dad at seven in the Monday morning waking him up, can you have Freya today and taking her down there before work getting to work , so that was a big challenge and luckily we’re over those things now because the specialist wrote to the school and of course we’re on more of a, a plan.

At that point his attendance was so low that the school was worried, you know, ‘why is he all the time not coming to school?’ and until we really had a letter from a GP that we were able to provide to school you know they needed to know that there is something in writing, not just what I told them because all I could say to them, “Well, he just got really bad cold symptoms,” because that’s what it was at the beginning, but they… you know they… I could understand why they wanted him to be at school, [sighs] it was just like a circle and it was just never ending, and then we managed to… he had to go to school two full days just before half term, and a few days later during half term just completely crashed out, when he was just so tired he couldn't get up at all from bed, and so we went back to paediatrician, you know we do need something in writing and he can’t be full time at school because this is just not good for him.

Yeah, that’s so frustrating.

Yeah, and I know this is the case of all the parents, you know we… luckily, I'm in contact with the Facebook… Facebook group for the Long Covid Kids clinic… charity, and you know parents are asking each other questions, you know what do I… what else do you take? What do we need to do? And they all have the same problem. If the doctor doesn't provide any letters, school needs to be you know they're asking… it’s not that the school doesn't want to support a child, but they need to have some kind of evidence, you know and if the paediatrician doesn't recognise that you know, yes the child has a reason for a… tired for a reason, you might not have you know burping symptom like Samir has, or maybe they are just too tired to attend, or brain fog or something, and they would say, well, I don’t see anything why there are… you know all the blood test results come back fine, there is no other reason, then the school has no backup to say ‘Yes, OK we can authorise this.’

So, it’s just… it just seems to be going down back to GPs and paediatricians to be willing to pick on it and you know provide more support. That’s—

Had the school… they were worried about his attendance?

Yes, of course they were worried you know as you would be; I can’t blame them for that you know that’s normal.

Could you tell me a little bit about how you're managing school? Like your schoolwork firstly: how’s that all going?

The schoolwork is like it’s OK, and I'm on a reduced timetable.

OK, why’s that?

Because… well, like because I'm tired a lot.

What does a reduced timetable look like?

I go half a day, and then stay there for half the day and then go home.

OK, do you go there for the morning and then come home?

Just like either, morning or afternoon.

And how have your teachers reacted to you being unwell.

They said it’s a big… like, they're slowly trying to get me back into school.

Have you had any problems with that?

Yeah.

What sort of problems have you had with the school?

It’s like…they want me to go like full time again, but like it’s hard for me.

Are there people who are supportive at school?

Yeah.

Who are they?

Like, my teachers.

Yeah, so do you feel like the teachers are supportive but it’s the school as a whole that is trying to get you back?

Some of the teachers, but like some of the teachers aren’t, because they're like they're telling my mum they're going to fine her if I don’t come back to school soon.

Really?

Yeah.

What… so… who? Explain this to me [chuckles]. So they're saying that they'll fine your mum if you don’t return to school?

Yeah, like if I don’t go back full time they're going to fine her.

Fine her for not—?

For me not going to school.

For you not going to school?

Yeah.

What do they call it, like a truancy situation?

Yeah.

That doesn't seem very fair.

Yeah.

Is your mum sort of working with the school to try and you know explain things to them?

Yeah, she’d got like a letter from the GP saying that like there was something wrong with me and like I've been sick and stuff, but they still don’t really understand.

That seems very, very difficult, like quite a difficult situation. What do you think about it? What do you think it is about Long Covid that they don’t understand?

I don’t think they understand the effect it has on you.

School has now really helped, like my school is very good at like… with like… with like disabilities and stuff, like they were very, very like on top of it. Like I have a break pass, so if I'm ever tired in lessons, I just show the teacher this pass and like they can't say no to this pass, like I ha… like if… I basically with this pass, I could just… I could just leave, like they can't even say no, I just show them, and I can leave, so if I need like a break or a rest, I can just go. I am allowed to exclude myself from PE and go into the supportive study room and do like homework if I can't do PE. I have an early lunch pass so I'm not like standing at lunchtime and I'm just like eating instead of just standing outside and then standing some more, so…Yeah, school’s put a lot of systems in place, which is really helpful.

Amazing, how has that come about? Was that because you've said to them, ‘these are the problems that I'm having,’ or…?

Yeah, my… me… and I have… because they… basically everyone who is part of like… the… like who… like are regular in welfare, usually gets like a teacher that like administers like their like main care and like what… like what their needs, so I just talk to my teacher, [teacher name], and like she just said, ‘OK, well, if we put this and this in place, this will probably help you.’

Lucy: Yes, I’m, I’ve got a robot now which it can go into school and so I do one, well, I do two lessons one week and I do like a day on like a Tuesday and a Thursday on the robot. So, if I’m tired, I can just, I can be in my bed, resting and just listening to it. So, I’m still learning stuff. It’s just so I’m not so behind on my work. Because I would come in and it would be a test because that’s my luck. Like every, it’s mainly history and science. Like I’d come in every history lesson and it would always be a test. I would have no knowledge whatsoever because I hadn’t been in for any of the other classes. And it would be the same with the science. I would just, I wouldn't know anything and it would be you know, really hard and that did not help with stress at all. So, the robot has been, it’s taken a while to work. But it’s, it’s useful now. Yeah.

Interviewer: Okay. I can’t quite picture what the robot is like whether it’s [laughs] —

Lucy: It’s quite cute. It’s, it’s fairly small. It’s got a head and—

Mum: It reminds me of Wall-E. Have you ever seen the film, Wall-E?

Interviewer: I have.

Mum: The little eyes that light up and stuff [laughs].

Lucy: It’s more like EVE than Wall-E.

Mum: Yeah, mainly, yeah. It goes to bed and stuff and make it and she can talk to her classmates through it and stuff.

Interviewer: That’s amazing. So, you could use that when you’re in school and also when you’re at home as well. Is that right?

Lucy: Yeah. So, if I was like way too tired at school, I could go to the student support or something and just ask them to take the robot there and then I can rest while I’m like listening to the lesson or something.

Interviewer: So, that just gets kind of broadcast through your robot?

Lucy: Yeah. On my phone, yeah. It’s a AV1 app and yeah.

Interviewer: And was that something that the school provided you with or was that something that—

Lucy: It was something that the school provided us with.

Mum: We kept asking for mo- weeks and weeks if they would help her with a tutor or something for the time to catch up. And then they randomly said, ‘We’ve got robots. She could have a robot.’ We were like, ‘Oh yeah that sounds great.’ So er, yeah.

Interviewer: Does that record a lot of the lessons that you missed then and you’re able to catch up on those when you feel well enough?

Lucy: It’s live and it did when I kind of—I’m not allowed to record or anything. Mainly for like some people could take pictures and post it for privacy reasons.

Mum: It, it’s very dependent on them having someone available to take it to the lessons. So, this week, they’ve had lots of people off with Covid, lots of staff off. So, she hasn’t been able to join the lessons because there’s been no one to take the robot to the class, so.

And then pretty much since September, I’ve only been in school for three days. recently I’ve been trying to go in for art classes because it’s-, I don’t have to concentrate, which is a problem for me, I can’t concentrate and with, like, reading and stuff, so art was a good option to have and to go in and just sit and, sort of, relax and actually get to see my teacher to talk about what work needed to be done to, sort of, get me my AS Level.

Have your teachers said anything to you about it, or have you felt like they’ve been understanding?

I feel like most of my teachers have. I, the other two subjects I do are psychology and RS, and I pretty much haven’t done any work since well, when we started and I was in for that couple of days. I haven’t done any work on that, but the teachers have been putting stuff up on Google Classroom just in case I feel, if I did feel well enough, I could do some work, work to maybe catch up; I haven’t managed to do any of that yet. But my art teacher has been really good about it all and she’s been, she sat, a few weeks ago, and worked out what work absolutely needed to be done, for me, so I had like a specific task to focus on while the rest of the class moved onto whatever they were doing next in the topic. So that was quite nice, and she came up with the idea of basing my whole art project around Long Covid, because we have a theme of fragmented, so that works quite well with how my life is at the moment, compared to how it used to be.

That’s good that your teacher was able to work around your situation.

Yeah.

Can you talk to me a little bit more about how you feel like that relates with being fragmented?

So I used-, well, I am an Irish dancer, so I used to take part in competitions, and from like that point of my life, I still used to go to classes just to sit and watch and see my friends dance and like my life has sort of fallen apart a little bit to how it used to be, so I can’t do as much as I used to be able to do because of the symptoms and just feeling exhausted all the time.

So, how’ve you found it moving back home from uni?

I actually always hated living at uni [chuckles]. I even hated in the first year when there wasn't Covid, so I actually was glad that I got to be at home, even in the second year I was basically home the whole time, so that hasn't really been a problem. I did get… because obviously uni all went back in-person in January, I think, but I had a meeting with my head of neuroscience and I basically told him what was going on and he was like, “It’s fine for you to do it from home,” so I've been glad that I've been able to stay home [chuckles].

So, would you say that your uni’s been supportive with that—?

Yeah, really supportive, yeah.

So, are they then allowing you to stay at home; have they done anything else in regards to allowing you to manage your Long Covid symptoms?

They've encouraged me to apply for extenuating circumstances and like a support plan, but I didn't want to. I… maybe it would have been smart to, because I definitely… oh, one of the things I miss, my… I do have brain fog and forget a lot of things, and obviously that has changed the way that like my performance in my exams and stuff, but I just… I just wanted to get on with it and have the same circumstances as everyone else. But they… they wouldn't… they wanted me to have one and they would have like… that would have given me extra time maybe and like whatnot but that’s not something I… the only thing that would have benefited me is to not have as much work, and that’s not something they can offer me: like I don't need extra time, I work quick, like I've got good organisational skills so I just didn't think to, so those are the only things they really offered. They… so they… she also did stress I'd stop uni and take a year out, but I would… was… I would never have done that, so… yeah.

Yes. I can leave or like put it on hold for one year and I put it on hold for one semester when I went to the UK. Like before coming to the UK, I finished my degree. I only was missing the thesis so I had everything else completed and the plan was that I would go to the UK, do one semester, one term of normal studying and do my thesis there and then I’m going back to Germany, will go on to study my masters. That was the plan and yes, it failed. I had to like quit my studies at [university] in I think in January or February I quit there because I said I can't go back and yes, now I'm on leave but in the next term, like in the next winter term beginning of October I will have to do my thesis and I'm currently fighting to get like more time or any other kind of compensation for my health situation. The issue is my university doesn't recognise Long Covid as a condition where you get more time for example so that's an issue and yes.

How do you feel about your progress at school, or is that not a concern at the moment?

Some subjects I’m behind, but I’m still doing maths, English, science, computer science, I’m still making sure I’m on top of them really. Just trying… I’m not trying to cram myself… just trying to cram the subjects in, and try and do them every day, I’m just trying to stay on top of them as much as possible because I’m… I’m at the moment I’m OK with the maths, the English, the computer science, so I’m just trying to stay on top of stuff, but I don’t think I’m behind, if I go back into school, on those subjects, I think I’ll be… I’ll be OK. But I’ve just left subjects like art, drama, I just left them alone really, I just make sure I’m doing the core subjects and just leaving the rest because it will take… it will take more… it will take more brain power really, it will be un-needed stress to just do the rest of them.