Lucy A

Age at interview: 14

Brief Outline:

Lucy is 14. She got Covid in October 2020. When she felt sick, she found that water tasted of burnt sausages and she felt very unwell. She had to go to hospital because of experiencing chest pains. School started to exhaust her, and she wasn’t able to attend full-time. Lucy experienced constant headaches and a deterioration in her mental health, including thinking about suicide and harming herself. She is having therapy and has started rebuilding the amount of activity she can do. She feels hopeful that she is starting to recover. Lucy was interviewed in March 2022.

Lucy lives with her parents and 16-year -old sister and 10-year-old brother. Ethnicity: White British.

More about me...

After catching Covid in October 2020, Lucy has been on a reduced timetable at school and has had to reduce her activity levels to the bare minimum. She experiences headaches, fatigue, feeling faint, aching limbs, heart racing when she stands up or climbs stairs, always feeling hot, and not being able to sleep. She has social anxiety and has been diagnosed with depression which she and her family think was caused by Covid. Recently, with support, acupuncture, and medication, all of Lucy’s symptoms are starting to improve.

Having Long Covid has not affected Lucy’s family relationships, but they can’t do the things that they used to do together and have adapted what they do so that Lucy can be included. Lucy has not been able to do the hobbies she had before but has started singing lessons. Her school have been supportive and provided a robot so that Lucy can attend classes virtually from home. At first her friends struggled to be considerate, but this is improving now they understand more about what is going on. Lockdown lifting has also helped her depression. Recently, she has been able to go to town with her friends for the first time.

Lucy saw a paediatrician who she found unhelpful and felt minimised her problems, implying she was exaggerating. He also made comments about her having gained weight, which affected her eating. The paediatrician did help by prescribing medication for sleep and headaches and provided a letter to excuse her from school. A psychiatrist diagnosed depression, which made Lucy feel that her experiences were ‘real.’ She was prescribed antidepressants and accessed talking therapy which helped a lot. Lucy hasn’t joined any groups for others with Long Covid because she finds she compares herself to others, which makes her feel worse. Lucy has attended a Long Covid clinic and started a new sleep routine. She also had acupuncture. She feels she can cope with more and is hopeful that things are going to keep improving. Lucy thinks that professionals should be mindful of the impact of their words on children and should take their experiences seriously. For other people with Long Covid, Lucy would encourage them not to lose hope if their recovery is slower than they would like and to be patient with the ups and downs of Long Covid.

Lucy A’s mum read up about Long Covid and figured ‘that fits.’

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.

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.

Lucy A said, “it definitely took a while” for her teenage friends to understand what she could and couldn’t do but “they are better now.”

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.

If she did ‘way too much’ Lucy A would feel exhausted and even more tired than normal.

If I do way too much then the next day I’ve had, it where, it feels like I, I’m like I can’t move because I am so exhausted. Like it takes so much effort just to like lift my arm up or sit up. It’s like I’m so drained, I can’t do like the bare minimum and stuff. That’s definitely if I’ve done way too much, but if I do too much I can definitely tell because I am, yeah, I can do even less the next day and I’m, I’m a lot more tired than I would be normally, which is very tired [laughs].

Lucy A used to have constant headaches which she felt mostly at the sides and top of her head. They have been better since she started taking medication.

They were quite, they were mainly like at the sides of my head or kind of at the top. At the, at the front. They were kind of everywhere [laughs]. It was, it was just, it was constant. It wasn’t like you have a headache and it feels like it’s taking a while, but it like it goes away for periods of time, but then it comes back. It was, it was constant. It would just be less painful sometimes and then like if I was, I guess really stressed, it would go up like and it would be really painful. But yeah, the Amitriptyline, it did really help with the headaches. I stopped getting them constantly. I still get them from time to time and they’ve kind of worsened ‘cos I’ve dipped a bit. But they’re definitely not as bad as they used to be.

Lucy A feels faint every time she sits or stands up, and if she does any physical activity her heartbeat gets very fast and hard.

Other than the fatigue where I can only do certain amount of activity before I get really tired, I get really faint every time I stand up or sit from lying down just you know, if I stand up or sit up, I get really dizzy and then my vision kind of, it goes black. I kind of walk it off though ‘cos I’m quite used to it now. But yeah, that was kind of one of the first, I wouldn't say it was one of the first symptoms. It kind of, it came around quite at the start.

And what’s happened kind of recently though is if I stand up for too long like maybe ten minutes or something, my knees give in, and I also feel really faint and I kind of just so I need to sit down. Heart rate, that’s another thing. If I do activity like literally anything, like walking up the stairs or something my heart, my heart palpitations are quite high, my heartbeat is faster and like harder. That’s really if I do any form of activity like at all.

Lucy A’s GP and paediatrician didn’t think that depression and Long Covid could be connected whereas her therapist did.

Yeah, it was one or the other. He didn't think it could be both. And I think the when the GP referred her to the paediatrician, she said, she said the same thing ‘I’m referring her. I think she’s either got depression or Long Covid ‘cos I don’t think anyone really realised that it could be both. It could be connected and that you can depression with Long Covid.

And so, your therapist, do they understand that it’s part of your Long Covid experience?

Yes. She knows that I like, with I have anxiety and it definitely heightened because of Covid and Long Covid. But I’ve, I’ve always really had anxiety. So, she’s helped with that. But she knows that like the depression kind of face of it is kind of based around the Long Covid. So, we trying to fix it [laughs]. I don’t know if that’s kind of the right term, but—

And what sorts of approaches is she doing? Is she trying to give you some practical ways of managing or is it just helpful to talk things through?

It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She, she’s kind of found my way of dealing with things.

Lucy A was looking forward to going on walks with her family again.

Lucy: I mean, like a couple of weeks ago, I tried to unload the dishwasher. I did it like half of the top of it, but I couldn't do anything else ‘cos it’s a lot of muscle work having to, you know, yeah. But I’m not excited for the chores to come back though.

Mum: Excited for the dog walks to come back [laughs]?

Lucy: I am excited for that, actually. I used to hate walking the dog. And ironically that’s when I found out I had Covid. I was complaining about going for a walk with the dog because I felt weird and I had Covid. But I used to hate them because I hated walking. But like when I was going into town everyone else was going on a walk with the dog. And I really wanted to go, but I knew I couldn't manage it because it was like a really, really long walk. But I’m excited to do stuff as a family like the family walks every Sunday again. I’m excited to do that.

Lucy A’s family has had to adjust their expectations of what would be manageable, while trying to still make special occasions fun.

Lucy: Well, let’s use my birthday as an example because we like doing stuff for birthdays and that. Like I wanted to go to this Titanic kind of, is it museum?

Mum: exhibition.

Lucy: Exhibition. But it’s walking around for an hour and a half.

Mum: It’s driving into London and then walking around.

Lucy: It’s driving into London and then walking around for an hour and a half and so I couldn't do that. And then I wanted to go horse riding – couldn't do that, probably like couldn't deal with that. It would be too tiring. So, we’ve kind of settled to go into an arcade which it still might be tiring, but—

Mum: I mean to be. We, we suggested all these things and Lucy put, decided she didn't feel like she could cope with it and didn't want the pay off afterwards, I think wasn’t it. It wasn’t like she would go, ‘Can I go horse riding.’ We were like, ‘No.’ [laughs].

Mum: Well. We used to go on walks with the dog every weekend, as a family. And we haven't done that for over a year, I don't think which is a shame. We just couldn't manage it.

Lucy: Which is quite ironic considering we went on a family walk when I found out I had Covid. I was just before, it was when I was having my symptoms. We didn't know.

Mum: Yeah, I mean I’m not sure you’re too upset about that [laughs]. Cos you were never that keen on coming were you.

Lucy: I’m not keen on walking and so it was kind of a blessing in disguise. But it has more of a backlash than, you know.

Mum: Yeah. I guess it just means that we have to consider everything that we wanna do together. For example, going on holiday this year and it, thinking about what we can, we do. Manage and so that Lucy still has fun, but it’s not too much for her. We probably adjusted the idea of what we would do for, for our holiday because of what Lucy is going through.

Lucy: Yeah.

Mum: Last year, we went to where was it where we went to? I can’t remember. We, we decided to get Lucy a wheelchair in case like so that she could still enjoy stuff and spend a bit longer out with us. But she absolutely hated it and refused to go in it [laughs].

Lucy: I have very bad social anxiety and I, it also, it felt weird.

Interviewer: So, have you used them much or have you not found that helpful?

Mum: Oh we hired it. We hired it for the weekend. She didn't use it. We took it back [laughs].

Lucy: But, yeah, on that holiday, I was quite, I was really depressed on that holiday probably because I couldn't do stuff that we could usually do anyway as a family on holiday. —

Mum: Yeah, we used to be quite active doing things, seeing things.

Lucy: We’d go on walks everywhere and we do stuff. I didn't really tell them until after the holiday that I was really depressed. They did walk on me crying once. But yeah.

Mum: You worry about upsetting everyone else, don’t you.

Lucy: Yeah, I worry about upsetting everyone else. I kind of kept it to myself until after the holiday and then I told them.

Interviewer: When you say affecting everybody else, you mean affecting everybody in your family, your mum and your dad and your brother and sister?

Lucy: I didn't, it’s supposed to be a holiday. It’s supposed to be nice. I didn't wanna bring everyone down and you know, yeah, it sucked, definitely.

Interviewer: And now in your family life have you all just adjusted to thinking that this is the new normal for now?

Lucy: I mean, sometimes we have those little things where we kind of forget what I can do. But all in all, we definitely kind of adjusted certain things, yeah.

Lucy A was off school with Covid for three weeks. She found school exhausting when she went back, which was unusual for her.

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.

Lucy A was going to school three days a week to help her manage her symptoms. Her school provided her with a robot which meant she could be in class virtually on the days that she was at home.

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.

When Lucy A hears about other people who are doing worse with their Long Covid, it sometimes makes her feel that she does not deserve the care she is getting.

And do you know other people then of a similar age to you with Long Covid?

No. No one [laughs]. There is like a way you can communicate with them. It’s a Long Covid group. My mum is with the parent one. But there’s a kids’ one where they can chat. But I constantly find myself comparing my problems to other peoples’. Basically, where I wonder if I got that from my paediatrician, where like if I heard about someone else’s problem, I’d be like, ‘Oh my, they’ve got it so much tougher than me. I don’t really deserve to have any help. They should have it.’ And stuff like that. I’m not saying they shouldn’t have—just you know. Like, yeah, I would find myself comparing my problems to theirs and feeling like you know, I don’t have any right to complain or anything.

Was it ever helpful to you to compare yourself with other people or have you always felt that it’s made you feel like that?

It’s always kind of, it’s always made me feel really bad about it. So, I avoid—like things like that because it’s not good for mental health and stuff. But there is Long Covid groups available for kids if they do want to talk to other people in the same situation of them, but, for me, personally, no.

Lucy A says the GP took the Long Covid seriously and made referrals to both a psychiatrist and a paediatrician.

Mum: 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.’ And then she brought Lucy in for some blood tests and a chat and she did a physical on you, didn't she. And then, that’s when she decided, she said, ‘I’ll refer you down both routes, the psychiatrist and the paediatrician.’

Interviewer: Okay. Thanks that’s helpful. So were they helpful? Was that a phone consultation then mainly, rather than you seeing them directly?

Mum: Initially, it was a phone conversation with just me. Then she did see Lucy.

Lucy: She was really nice.

Mum: She was lovely. And in fact, actually, we went, I went back to her a couple of months ago after we’d seen the paediatrician and decided we didn't really want to go back to him because he seemed done with her. I went back to her and I said, ‘Is there really no, you know, can you...?’ Because I’d asked her to refer Lucy to a Long Covid clinic. But she’d told me that there was no paediatric clinic, locally and weren’t allowed to refer out of area. That was back in, you know, last year, I think. And then I went back to her a couple of months ago and said, ‘Can you still not refer her to a Long Covid clinic?’ And she went away and looked into it and found out that our local adult clinic was taking paediatric referrals now. I think she put it before the local committee or something that was meeting that day and they came back to her and said, yeah they’d take the referral. So, Lucy was referred and we had our first appointment with them last week.

Lucy A says that the paediatrician made her feel that he didn’t believe her. The therapist she sees for her anxiety has been helpful.

Lucy: He 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 she had lost her ability to walk. She was in a wheelchair. 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 because 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. Like when I went there, he had to weigh me, obviously and stuff like that. And he would constantly, like every time he would be like “Oh you’ve gained weight” and he would say it like that’s good and stuff, but it really affected me like the, like he kept saying that I gained weight because every single time like he was and he would say, “Oh you’ve gained weight” every time. And like later on, he was, about a month ago, actually, so it was fairly recent. I tried to starve myself in order to get skinnier because I can’t work out or do anything like that. And his like role in that was quite big because I kept thinking like that I’m gaining weight and stuff. So, he wasn’t great in the fact that, you know, he kind of, he minimised my problems and he contributed to other things. Also, before I got diagnosed with depression, I used the word depressed as like it’s an adjective to how I was feeling when I described it. And he, he would get mad at me every time I used the word depressed. He would be like, “I haven't diagnosed you with depression. You can’t say that.” Like so then we went to—

Mum: A psychiatrist.

Lucy: We went to a psychiatrist and then she diagnosed me with depression.

And so, the therapist, do they understand that it’s part of your Long Covid experience?

Lucy: Yes. She knows that I like, I have anxiety and it definitely heightened because of Covid and Long Covid. But I’ve always really had anxiety. So, she’s helped with that. But she knows that like the depression kind of face of it is kind of based around the Long Covid. So, we trying to fix it [laughs]. I don’t know if that’s kind of the right term, but—

And what sorts of approaches is she doing? Is she trying to give you some practical ways of managing or is it just helpful to talk things through?

Lucy: It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She’s kind of found my way of dealing with things.

Lucy A (14 years old) has made a plan with her doctor at the Long Covid clinic for managing her symptoms at home.

Lucy: That’s the Long Covid clinic. He’s had her pull everything back and start a routine, so she gets, she’s supposed to get up every day and not sleep and go to bed at the same time every night.

For the past few days when I’ve been doing science, I’ve broken that and I’ve taken a nap. That’s because I’m doing constant work and I am napping. But after my science tests, I’m going to go back to that completely. I’m not going to nap. I’m going to do the full days.

Mum: You’ve started singing lessons.

Lucy: Oh yeah, I’ve started singing lessons as more of a—

Mum: A fun thing to do.

Lucy: Yeah. Because I was quite…I’ve been quite low because I can’t do any of the stuff that I used to do all the time. I have no hobbies anymore. And with singing, all I needed to do was just sit down and sing. It’s still, it takes up energy, but not as much as other things would.

Interviewer: Do you do that one-to-one or are you singing with other people in a choir?

Lucy: One-to-one. I could not sing in front of other people [laughs]. I can’t. No [laughs]. I can’t. Too stressful.

Lucy A finds it very helpful to talk things through with her psychiatrist. She thinks acupuncture has also helped.

Lucy: It’s very helpful to talk things through. I’m very comfortable with her. She’s a very good therapist. She’s really nice. She’s kind of found my way of dealing with things. So, I’m quite creative. And so, if I feel kind of down or anything, I always like play with clay and make something or paint or you know, colour or draw. I do something like that because I’m artistic and I do, I like doing stuff like that. And she’s definitely helped with so…she’d be... She constantly says, as annoying as it is because she says it every session. She always tells me to kind of look at the situation in a different way. And because she says it every kind of session, it’s annoying and stuff. But it’s slowly working and it’s definitely, I’m seeing myself look at more of a positive side of things. Yeah, it’s kind of working it into my brain or something, but she’s very helpful. Yeah.

Mum: Started doing acupuncture, haven’t you.

Lucy: Oh yeah, I started doing acupuncture. It’s weird because they just, they stick needles in places like at the top of your head, which you don’t think they could do that. No, I wasn’t expecting that.

Interviewer: Have you found that? Do you think that’s helped at all yet?

Lucy: Yeah, I think that’s helped, yeah.

Interviewer: And is that something that you’ve found out about for yourselves or did your GP suggest that?

Lucy: We found it out, yeah.

Mum: Yeah, we just got to the point where we’re just going to try and anything [laughs].

Good plan [laughs].

Mum: We’ve had two sessions in the last two weeks. I think she’s coped with more than she was doing before. But it’s hard to say.

Although it will still take a long time, Lucy A and her mum now feel she’s on the road to recovery. She’s able to see friends again. Several things had helped her “in their own little ways.”

Lucy: It’s going to be a while. And I know that, but I’m just, I’m glad that we’re actually making progress because like back then if I’m in a little bit of progress, it wasn’t that obvious [laughs]. And it would, I would lose it in like a day. So, it wouldn't really be progress. And I couldn't actually see a genuine change. And I know it’s going to take a long time, but it’s fine because I know I’m actually on the road to recovery and it’s not just something, you know.

Mum: Yeah, I mean she’s still obviously, if she does too much, it’s still causing problems. But the Long Covid physio said it’s going to take months. All the effort she’s putting in now, she’ll see the fruition of it properly within hopefully a few months.

Interviewer: That’s absolutely great. And are you feeling better in yourself as well then?

Mum: Yeah. I kind of, I lost hope for a bit. I was like, ‘It’s been over a year. I’m not going to…,’ you know, but yay [laughs].

Interviewer: You’ll keep those, yeah, keep those, keep those fists going [laughs]. Yeah, that’s so good to hear. And do you think, it sounds like you’ve had quite a whole combination of things then. You’ve got your advice from the Long Covid clinic and the acupuncture and better sleep. Do you think any one of those things has helped in particular or do you think it’s a combination?

Mum: It’s all of them, definitely. I think they all help in their own little ways. Yeah, there were definite signs of improvement before we started the acupuncture just from getting the sleep routine down and it seems it went against everything to stop her napping when she was so exhausted. But I actually think that made quite a difference—

Lucy: It helped the sleep routine more.

Mum: Yeah, it just helped you reset everything, even though it was really a struggle.

Lucy: That was definitely one of the really hard parts is not napping, because I just, I couldn't open my eyes sometimes. I just, I needed sleep.

Lucy: Yeah, I haven't been able to go into town in months. Like ages, I haven't, like so many shops have changed. And I was like, ‘Oh my god this is a new shop’ and everyone is like ‘That’s been there for ages. What are you talking about?’ It was really nice, yeah. It’s definitely. It’s cool [laughs].

Interviewer: That’s great. It sounds like you’re feeling much more like your old self Lucy, would that be—

Lucy: I’m definitely more excited about everything and yeah.

Mum: Hopeful.

Lucy: Hopeful, yeah. I’ve got positivity. Yeah.

Lucy A has really missed school and “can’t wait” to get back. She and her mum are feeling hopeful that she is getting better.

Lucy: I’m excited. I’m ready to get better. I’m ready to go back to school full time. Like because loads of kids will be like, you’re so lucky, you do get to miss school and stuff. But I would give so much to be able to go back to school full time. I miss it a lot. And I can’t wait – I’m ready [laughs].

Mum: I think for the first time in a while it feels like there’s some genuine hope that we might be on the right road.

Lucy: Yeah.

Interviewer: That is such good news to hear and that seems like, you know, that seems like such a big change because it’s four or five weeks since we spoke, isn’t it.

Lucy: Yeah.

Interviewer: That’s absolutely tremendous. And that must be nice for you all as a family as well as for you.

Mum: Oh yeah, amazing. It’s been so nice just seeing her be able to get stuck into things and cope with a bit more and just, yeah, to feel like there’s a chance that things might be on the right, going in the right direction. Yeah, definitely.

Lucy A advised that other young people be ‘very patient’ with their recovery and encouraged them not to lose hope.

Lucy: It took a while for me to actually I guess in, acknowledge my progress because I used to do it a lot if I made the slightly difference. And then it would knock me down a lot deeper when it wasn’t actually progress and it was more on just a good day. So, like, don’t get too caught up in if you have a really good day because there’ll be like really low dips. But also, don’t lose all of that hope. Because—

Mum: You have to be patient. It’s gonna take time.

Lucy: Just be very patient because it’s been a year and a half and I never thought it would, I thought it would be over in like two weeks or something. I didn't think it would take this long but it has. But it’s getting better now, so, yeah.

Lucy A felt the paediatrician didn’t understand how bad her symptoms were. He made her feel she was ‘just being dramatic’ or ‘hormonal.’

Lucy: Be mindful that they’re talking to children. Not just with saying how long it might take, but with other things as well like that paediatrician, he talked about my weight a lot and that kind of that spiralled into me not eating for almost a week. So, just not just with delivering things like ’Oh, this might take a really long time to do it,’ just be mindful that they’re talking to children and that they take everything in a certain way differently to how other people might take it.

Interviewer: Can you describe that a little bit more? In what ways do you think it’s different?

Lucy: Like ‘cos you were talking, I’m going to use the weight example. If he was talking to maybe someone else ‘cos he was like, ’You’re gaining weight.’ Every time we went there and he measured me, he weighed me I mean. He was like, ‘Oh, you’re gaining weight and it’s a good thing.’ An adult maybe they might be like, ‘Oh, that’s good. I’m gaining weight. I’m not losing it drastically. I’m healthy.’ But, for me, I’m like gaining weight. I need to lose it. I need to lose weight because I just shouldn’t be gaining weight because that’s how my mind kind of works not healthy, but yeah, just things like that.

Mum: It’s about self-image and things, isn’t it.

Lucy: Self-image. Because teenagers and I would say children, but mainly teenagers, they don’t have a, they’re still kind of developing their self-image. So, be kind of mindful with stuff like that, yeah.

Interviewer: And you talked to me last time about the paediatrician and how he’d challenged when you’d used depression as an adjective to describe how you were feeling, depressed as an adjective to how, how you were feeling. What would you, what would you say to somebody like that about how that made you feel?

Lucy: It made me feel rubbish. That’s why I was so excited, or I wasn’t that excited when I got diagnosed with depression. I, yeah [laughs]. But I was just, I really wanted to say to him like, I do have it. I got diagnosed by someone else because you didn't try hard enough, you know. Like one session with someone and I was diagnosed with depression, and I got loads of things to help with it. And we’d been seeing him for ages, and he wasn’t that helpful. And it was like he didn't believe me at all like, ‘Oh, she’s just being dramatic. It’s fine. Maybe she’ll just need some time off of school. Oh, she’s just hormonal or something she’s going through her teenage years. She might be on her period.’

Mum: That’s how he made you feel.

Lucy: That’s how he made me feel. He made me feel like I was just being dramatic and it’s just growing up when it wasn’t.

Mum: Yeah, I mean, he, for someone who said that it, you can’t use the word ‘depression’ he was the one saying it could be depression or it could be Long Covid [laughs]. Not both.

Lucy: It was just, if anything he said was right, but if I said anything, it was wrong. I can’t say anything ‘cos I can’t diagnose myself with anything. I can’t say—

Mum: I think, in his own way, not to stick up for him, but in his own way I think he was trying to be—

Lucy: I do understand that.

Mum: Make her feel positive.

Lucy: But he did it in the wrong way [laughs]. So, Yeah.

Mum: I think you felt a bit belittled by him, didn't you?

Lucy: Yeah.

Mum: And he would also say about, you know, it’s not, ‘You’ll get better. I basically have patients with much worse things.’

Lucy: Yeah, he compared me to someone who had lost their—what’s it called, mobility. They couldn't walk. And he kind of, he compared their problems to mine like, “Oh, they have it so much worse,” you know.

Mum: ‘You’ll be fine.’

Lucy: You’ll be fine. Which is not something you should say to someone like, I know, but I shouldn’t be comparing myself to someone else’s problems as it’s still my problems.

Interviewer: So, do you think he was trying to give you confidence that you would get better or do you think he just wasn’t able to listen to what it was like for you?

Lucy: It was a bit of both. I think his way of trying to be on the brighter side was just telling me that I was making it all up.

Mum: He didn’t—

Lucy: Well, that’s how I took it. That’s how I felt.