Jasmine

Age at interview: 16

Brief Outline:

Jasmine is 16 and in fifth year at school. She thinks she first caught Covid in August 2020. She took a couple of weeks off school but found she couldn’t manage going back to school. After a year, she went back to school on a reduced timetable but after two weeks caught Covid again which caused all her symptoms to get worse. She is not as independent as she was and can’t socialise with her friends or spend time with her younger siblings in the way she used to. In the last few months, she has started getting specialist support for Long Covid. She still feels she is in the process of recovering. Jasmine was interviewed in March 2022.

Jasmine lives with her parents and three siblings. Ethnicity White British.

More about me...

Jasmine is 16 and lives at home with her mum, dad, two younger brothers, and younger sister. She thinks that she first caught Covid in August 2020, but she didn’t experience the classic symptoms that were being talked about at the time. When she went back to school after two weeks, she didn’t feel right and felt panicked. She was affected by brain fog, shakiness, fatigue, circulation problems, acid reflux, dizziness, and nausea, and couldn’t stay in school. She was told by her doctor that her symptoms were post-viral. After a year off school, Jasmine started back in August 2021 on a reduced timetable but caught Covid in September and all her symptoms got worse. At the time of her interview, Jasmine wasn’t attending school. Her ongoing symptoms include breathlessness and weakness in her legs which means she can’t walk very far. She worries about going out on her own in case she falls. Jasmine’s physio arranged a wheelchair for her, which helps but means that Jasmine isn’t as independent as she used to be.

Because of worries about being reinfected with Covid, Jasmine’s siblings are home-schooled, and the family haven’t been going to busy public places. Jasmine also hasn’t been able to do as much as a big sister as she used to. It has been hard for Jasmine not to be able to join in with friends, some of whom she has lost through having Long Covid. She socialises more online and via social media. Getting ready to go out is sometimes so tiring that she can’t then go out. It has been difficult to talk to people about Long Covid because there is so little understanding of it.

Initially the GP said Jasmine’s tiredness was because she was reading at night. Jasmine felt like her GP was saying it was all in her head. A paediatrician diagnosed post-viral syndrome and eventually chronic fatigue syndrome. Through her mum looking on the internet, they thought it may be Long Covid and suggested it to the health professionals. Getting this confirmed was a relief, showing that it was not all in her head. There have been times when Jasmine’s physical symptoms have been suggested to be anxiety, which has felt like gaslighting to her. Jasmine has had helpful support from an occupational therapist via child and adolescent mental health services. She has been learning to pace her activities and manage her activity levels. There are some health professionals’ appointments she doesn’t want to go to because of the way they make her feel about herself. She thinks that there should be more understanding among health professionals so that patients don’t have to push to have their experiences acknowledged. Jasmine feels this might happen as more is understood about Long Covid.

Jasmine’s mum learnt about Long Covid from talking to people at a social media group.

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

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

Teenager Jasmine saw the Long Covid diagnosis as a relief, as it meant it wasn’t all in her head.

Yeah, I think for it to actually it felt, in a weird way it felt quite good for it to be acknowledged and kind of it just made, it made sense and it felt good that like I went to the physio and they acknowledged I have Long Covid and my clinician said it was like going off as like post viral syndrome or I had chronic and I’ve been told chronic fatigue but. Yeah, it was, I don’t, I don’t know it was kind of, it was, see those other people, all I speak to another person who has Long Covid and just to like see it, have other, speak to other people and see that other people are going through similar things who have it as well. It felt, you know, in a way good, but it felt it was nice to know that it’s not just me and that there is actually like. It is something. It’s not in my head.

Jasmine and her mum talk about their frustration that symptoms were dismissed as anxiety and how they feel that doctors can be ‘belittling.’

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.

Jasmine says some of her friends are nice and understand whereas others don’t. She has fallen out with some friends over it.

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.

Jasmine found it difficult to stay at school because she was very tired and couldn’t focus.

I was really tired. I was off school for two weeks and went to the GP and then tried to go back to school in middle of September and just could, couldn't last and didn't last an afternoon and just couldn't do it. I was I was really, I was really tired and yeah, but I don’t think again it’d just had gotten worse. My legs get really shaky I get brain fog, so I found, when I was in, was in school for like an afternoon. But it was, it was hard, and I couldn't really, I couldn't focus. So yeah.

Yeah, yeah fatigue... I get issues with my circulation, and I get acid reflux and I get really dizzy nauseous. But a lot of the symptoms have been, some of the symptoms have been brought on or made worse through having Covid again in September, I found that it made, made it all worse. I feel like I had it for a year and I felt like it was, I was starting to get better. I got to school in August 2021. I was on a reduced timetable, and I’d got, was in school two weeks before we got, I got Covid again and I just, I haven't been back since. I’ve been removed from classes and stuff.

Jasmine found walking difficult because she would get breathless and her heart would start beating faster. She sometimes fell over, and now uses a wheelchair.

Sometimes I get quite breathless going up the stairs or if I walk, if I walk very much. My so that can be quite, quite scary and like not being able to catch—finding it hard to catch my breath. And I put on, my heart rate is like varies quite a bit when I from sleeping to then sitting up, standing up because it can change quite a lot like and get, gets quite high. I tried, I had my mum’s Fitbit for a day and that was just to measure it and that can be quite, well it can be quite strange, yeah. I think and I’ve got, I’ve got a wheelchair now. I got a wheelchair from my physio and my, ‘cos my legs my legs are really weak, and I can’t walk very far or do very much. And I would collapse. I’d collapse a lot. So, I were just like, it’d just kind of fall on the, fall on the floor and not be able or not be able to stand up or walk or which can be quite scary not feeling like I can like control my own legs, which can be quite [laughs].

When Jasmine went back to school, she “still didn’t feel right” and only managed the first afternoon. She tried to follow school online for two months but also stopped that because she “couldn’t cope with it.”

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.

One of the hardest parts of Jasmine’s Long Covid was not being able to spend time with friends at school and seeing others her age doing their exams and going out while she was not well enough to do those things.

It’s not being able to not being able to go to school or like see people my age, socialise and everything. It’s all like online for me now over like social media or messages or but like seeing other, I think seeing other people but not like, not symptom wise, seeing other people my age that are going out in school or doing all their exams, going out and doing lots of things throughout the summer that I would like to be able to do, but I just can’t. I think is that’s quite hard. I’ve lost quite a few friends through this. They’re not understanding and just lose, losing touch with people that, yeah, it, it can be quite hard to then see other people my age going out and doing all these things, still in school, perfectly well. It’s quite, it can be quite, it can be quite hard to think—

To deal with that, yeah. I can understand that. And when you say that you’re seeing them doing all these things, is that through social media or—

Yeah. Or hear about it through like I still speak to a, a friend from school. So, I hear about things. Yeah.

Jasmine felt that the GP was simply not listening when they suggested that the reason she had insomnia was that she was reading her phone at night.

That would’ve been August, September 2020. I went to the GP because we’d been, it’d been a while and I still didn't feel well. And yeah, I found it, I go through stages of finding, if I don’t sleep very well and find it hard to get to sleep or stay asleep and so sometimes, I would read like books on like a Kindle app or read at night. And I didn't, I had the light right down because I know about blue light. But, yeah, they were just…they said it was because I was reading at night because I was on my phone.

And pretty much blamed all of my symptoms to that fatigue and everything and all of the symptoms because of reading on my phone and yeah, they did refer me to the paediatrician, but I mean that was August 2020 that Long Covid wasn’t spoken about like at all. I think some people like suspected it. But, yeah, it wasn’t really acknowledged.

Jasmine’s mother felt that the physiotherapist almost accused her of being “nut job sort of crazy stuff” and implied that her child was just anxious because she had told her about Long Covid.

And then, so you missed an appointment with her, we asked if she could not attend because you know, you were unwell, which again is in the NICE guidelines that you know, accept that someone with chronic fatigue and you know, is going to struggle. And we got an email back saying that you just couldn't possibly be spending all day in bed and that’s not what I’d said. I kind of, you know, I gently pulled her up about it and when I said you know, I had read the NICE guidelines and wanted to ask the GP about the things I’ve just asked them about.

 

She almost kind of accused me of it being like, you know, nut job sort of crazy stuff that I’d learned from Long Covid Kids, and you know, some of those things that are being suggested are from private doctors and there’s no way you’ll get anyone on the NHS to basically prescribe an antihistamine was her suggestion. And then, she said did I think that Jasmine was struggling as much because we’d basically told her about the Long Covid and that basically it was her anxiety and that again it was the message that it was all in your head?

Jasmine is double vaccinated and said she didn’t have much of a reaction.

I am double vaccinated. But yeah, I didn't, I noticed someone I speak to had struggled with the vaccine and I think having Long Covid and getting the vaccine, it can, it’s found that it’s those symptoms are more pronounced or after. I didn't really notice that having had it. I had it twice. But I just had a sore arm and kind of felt a bit like fluey or like, like I’d got a cold. But yeah, I know some people it can make their symptoms worse, or I know some people have got one and not getting a second one because having Long Covid it made them feel worse. So yeah, I’m not sure.

Jasmine advised people to pace themselves, and not do too much all at once. She thought it was important to connect with other people learning about Long Covid.

Yeah, I don’t know about speeding up recovery I’m just trying to work that out myself. But I think just, I find don’t, don’t push it, just try and try and manage your energy because I find that if I do too much or try and do too much all at once, I just yeah, the next few days, I’m just so tired. I try and take it, like pace myself and not do too much all at once and stuff. And I think more that, now that these, there’s studies coming out and Long Covid kids and I think this will help people, hopefully that are feeling the same just to like research, but also know that they’re not on their own, there are other people. I find it hard feeling like I was the only person not knowing. And now that now that there’s more known about Long Covid. I mean, they’re always finding out new things.