Evie

Age at interview: 15

Brief Outline:

Evie was 15 when she caught Covid in September 2021. She lost her sense of taste and smell and her other symptoms included anxiety, fatigue, chest pain, constant headaches, and brain fog. These got gradually worse over time. Evie manages most of the week at school but is limited in what other activities she can do. She prioritises things that help her mental health, which she feels is her biggest challenge. Evie was interviewed in March 2022.

Evie is 15 and lives with her mum, dad and 17-year-old brother. Ethnicity: White British.

More about me...

Evie was 15 when she caught Covid in September 2021. Her symptoms gradually worsened and they included anxiety, fatigue, chest pain, headaches, and brain fog. She hasn’t regained her sense of taste and smell, which makes eating hard. Brain fog makes her feel like her brain is a ‘cement block,’ and the headaches feel like something pressing against the sides of her head constantly. She gets chest pain and breathlessness when exercising, but also when she is resting. She has good and bad days with her mental health. In January 2022, her GP referred her to a Long Covid clinic, which she was waiting to attend at the time of her interview.

Before catching Covid, Evie was active and enjoyed running, playing netball, and badminton. Long Covid impacts every aspect of her life, even things like showering. School is more difficult than before she had Covid, which affects Evie’s self-esteem. She worries about her exams but would rather not ask teachers for help. She is managing three or four days of school per week but is so tired she can’t do much else with friends and family. Sleeping doesn’t always restore her energy levels, and she still feels fatigued. Sometimes she tries to sleep to escape pain from her headaches, but then the headaches stop her sleeping. She has started medication for this which is helping.

Since starting curcumin, vitamin C supplements, and the headache medication, things are getting better. Evie thinks it has helped to accept that she has Long Covid and chronic fatigue. She has stopped trying to push herself through her symptoms so she can heal in the long-term. She has changed the way she thinks about what she does, so that she doesn’t get ‘boom and bust’ in her energy levels. Evie is managing her energy by cutting out activities, prioritising important things, and reacting to how she feels each day. She balances school with enjoyable activities that help her mental health and give her something to look forward to in life. She doesn’t feel like herself, which affects her confidence in who she is and how others see her. The future seems uncertain because she doesn’t know how long she will be affected, but she is hopeful it will get better.

Evie didn’t know about Long Covid before and wasn’t worried about it. She finds that a lot of people don’t understand what she is going through. Evie is the only one of her friends affected by Long Covid which is hard because they can’t relate to her experiences. She feels left out when her friends are doing things she can’t, and bad if she needs to cancel plans because she isn’t feeling well. She feels like she is losing friends as she doesn’t have energy to put into her relationships. She doesn’t talk about it much and sometimes she worries her friends get annoyed if she does.

Evie’s GP referred her to a Long Covid clinic. She is on the waiting list. The support Evie has had from doctors so far hasn’t been that helpful, although the recent headache medication is working. She finds a lot of professionals say they don’t know much about Long Covid. She was advised to ‘pace herself’ and to keep going swimming, but she doesn’t know how to pace. This leaves her feeling hopeless and like her experiences are being invalidated. Her mum found advice on social media about supplements, but Evie doesn’t use social media for Long Covid. Evie thinks there is stigma around chronic fatigue and wants people to understand she is not choosing this or using it as an excuse. She thinks that health professionals should listen to young people and validate their experiences, and that others should be compassionate and understanding of the impact Long Covid can have on every aspect of life.

Teenager Evie described how the portrayal of Covid-19 as more concerning for older adults made her worry more about older family and not see herself as at risk of Long Covid.

I was never worried about getting Covid really badly and being really ill with it and getting Long Covid because you know I thought, ‘well, I’m young and I’m fit and I...’ you know, I was more worried about getting it and then passing it onto someone more vulnerable than me, so it was really a shock when I got it so badly and when it continued on, and I think a lot of people, at least my age, aren’t really worried about Long Covid or getting Covid badly because I think a lot of people first of all don’t understand it, but also just don’t expect it to happen to them.

Evie doesn’t talk a lot to her friends because she ‘knows they wouldn’t understand.’ One person even thought that her symptoms meant she still had Covid.

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.

Evie found that if she got ‘excited’ when she felt well and did too much, she would have to face being tired the next day.

I think I probably can tell when I’m doing a bit too much, it’s just hard sometimes because you know I get so excited by even feeling capable to do these things that I used to love doing, and then I sort of just do it anyway because I haven't been able to do it for a really long time, and then I have to sort of face the consequences of that the next day, so…Yeah.

Evie is so tired after school that she often goes straight to sleep. This is sometimes a challenge because of ‘awful headaches‘.

I just... I get back from school and I just go straight to sleep because I’m just so exhausted and I’ve also had really, really awful headaches from Long Covid as well, which then I’ll try and go to sleep to avoid, but then sometimes when I’m actually trying to go to sleep it’s so painful that you know I can’t, so I’m just sort of lying there so that’s... that’s pretty rubbish.

Evie described brain fog as if something was blocking her thoughts. She said her brain felt ‘just like a cement block’.

It’s just like something’s just... 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].

Evie described it as ‘the norm’ to have headaches all the time now. Sometimes the headache blurs into the background and sometimes it stops her from sleeping.

No, I never really had headaches before, but now it’s literally constant, like a constant headache 24 hours a day, and it’s like the kind of... there’s like a baseline headache that now I don’t see as that bad, relative to like when the headaches get really bad, but then I think about... like before I had Covid, those headaches would have seemed really bad, but now, because it’s just the norm to have a headache all the time now, and it kind of... it can blur into the background and then sometimes it’ll be really awful and I won’t be able to sleep and it’s just like something it pushing against the... the sides of my head constantly and it’s really like suffocating.

Evie can’t find pleasure in food since she lost her taste. She doesn’t feel safe to cook alone because can’t smell smoke.

Yeah, and... and things that I used to enjoy before, like I don’t... I can’t find any pleasure out of eating and like things that I’ve never had a problem with the texture of before, I struggle to eat now because things are very different when you only have the texture, and then with the smell, like, I can’t really like cook things a- alone at home because I can’t smell smoke, and things like that.

Evie felt that things were ‘looking up a little bit’ with her symptoms but was still careful about maintaining her energy levels.

It’s definitely been fluctuating. I think it was getting worse for quite a while but now we’ve started implementing different supplements like the vitamin C, you know things do seem to be looking up a little bit, it’s just... I just have to be aware of my energy levels, and you know I have good days and I have bad days but being aware that even if I’m having a really good day, not to overdo it because then it would take me a really long time to recover from that, so it’s just trying to be very aware of trying to maintain a sense of [chuckles]... you know maintain my energy and... and not do too much even if I’m feeling up to it, because there are some days where I can do... you know, go to the gym, but then the next day I might not be able to get out of bed, you know?

Not being able to do the things she used to enjoy has had a negative impact on Evie’s mental health. She says she doesn’t feel like herself anymore and describes it as “like a spiral of just not feeling great.”

Yeah, because you know like it’s... Long Covid has been the only thing I’ve really thought about for the last six months because it just impacts every single part of my life, whether it’s the fatigue, or whether it’s not being able to taste anything and not feeling motivated to eat, not feeling like I have the energy to out with my friends, you know it’s like the only thing I think about.

Yeah, that must be very, very difficult. So which of the symptoms would you say you've found most difficult? You've talked a bit about your taste and smell, what about your mind fog, can you describe what that’s like?

Yeah, so the... the chronic fatigue and the mind fog I would say has had the biggest impact on my day-to-day life because you know I can’t do the things that I used to be able to do. Like, I’ve had a lot of days off school because I just can’t... I can’t do it, and I’ve been struggling in school a bit more because of the mind fog and not... and not being able to focus in class, so it’s... and then obviously like not being able to go out with my friends, not being able to go to like netball club and stuff like that, and those things really help you know my mental health and help me feel really good, and then it obviously has an impact on my mental health and it’s like a spiral of just not feeling great.

Yeah, so I think generally it... the hard thing was that it was kind of like a spiral and that... you know, the chronic fatigue meant I couldn't do as much, which meant I couldn't do the things that I really enjoyed to do, and then it kind of just felt like... like I just wasn’t enjoying life anymore because I couldn't do the things that really... that really brought me joy, and that I was struggling in school, and I didn’t have the energy to go out with my friends, and it was just like you know I didn’t really feel like I had anything to look forward to because I didn’t know when it was going to end.

You know, and I think that was really difficult, and then having to take days off school and feeling like I was missing out on things with my friends, and opportunities...you know, things like that were really difficult and really had an impact on my quality of life and and how I felt about myself because I didn’t feel like myself anymore, you know I didn’t know how to... I didn’t even know who I was anymore.

Evie didn’t think her friends really understood how unwell she was and that there are bad days and good days.

I think like...  so something my friends don’t necessarily understand is like you know that it’s a really long-term thing you know and I feel bad for like disappointing my friends when I have to cancel plans or something even though I went out with them a week ago on a day where I was feeling really good, and then I have to cancel another plan with them because I’m having a bad day, and I think... like I feel bad about you know disappointing them or letting them down, and I feel like sometimes they don’t really understand that you know there are good days and there are bad days, and it’s... I don’t know when it’s going to end, I don’t know when I’m going to feel better, so it could be going on for a really long time. Yeah.

Yeah, I think especially like at... at my age, like I don’t expect to be... to have to go to bed after a trip to the supermarket, you know? Like I... I want to be out with my friends and I want to be having fun, enjoying the sunshine but I just can’t.

Evie said that her brain fog made it harder for her to take things in and focus in her school lessons. She struggled to do her homework because of low energy levels.

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.

Evie wanted to do well in her GCSE mock exams and prioritised school over other activities. She recognised though that saving energy for fun things was also important for her mental health.

I have... I’m in Year 10, so I have my GCSEs next year but I’ve got you know mocks coming up and I’m... I’m a little bit worried about it just because like I don’t have the energy to do revision outside of school that I normally would, and... you know, and I’m not focusing so well in school, and you know while I’ve never really been too concerned about exams, because you know I enjoy studying and learning, now I just don’t have the capabilities to do what I used to be able to do.

And at the moment are you managing to get to school most days?

I’m managing about four... three or four days a week I would say, but it’s just like I’m not doing anything outside of school really. I go to school, I go to sleep, you know, which is difficult, and you know like next week I have a school trip on Wednesday and I probably won’t be able to go to school on the Thursday because we’re getting back late and it’s going to be really tiring, so—

You talked a bit about your school life and you said you were choosing what to prioritise. It sounds like you've prioritised school, is that one of your top priorities?

I mean, yeah, obviously it is a priority, but you know sometimes for my own mental health I have to prioritise you know doing something that I actually enjoy doing, like, like going to netball club. I went... I didn’t go to school on Wednesday because I wasn’t feeling very well, but then I went to the netball club in the evening, and that was really worthwhile for me because I had a lot of fun and it... and it made me feel really good, so it... you know, obviously school does come above a lot of other things, but at the same time I have to make sure I’m still you know having a bit of fun.

Evie fell out with a friend but says she hasn’t been “able to put the energy into fixing that friendship.”

[sighs] I don’t know, that’s... it’s difficult. I mean, I think just having compassion and just understanding that it’s... that it’s really difficult and it’s a long-term thing that... that has an impact on your mood and... and everything, literally every part of my life has been impacted by this, whether other people realise it or not, you know? You know, even little things, like I had fallen out with a friend a few weeks ago and like I just haven't had the energy to... to put... I haven't been able to put energy into fixing that friendship because I’m just focusing on getting through the day and then... and that’s... so I feel like I’m losing friends because of this. 

Because she could barely function at the time, the advice to ‘pace herself’ left Evie feeling that her experience was not being heard or recognised.

I think we’ve spoken to maybe three or four doctors over the course of the past six months and I’ve not received, really, any support; it’s just been the same thing of saying to pace yourself, you know, just keep swimming, just keep going, it will be over soon, and it...and you know things like that, it’s...I’ve not had...that’s just the same sentiment that’s been...that’s come out of every single appointment that I’ve had and it just feels sort of invalidating of my experiences because it’s so much harder than just pacing yourself, you know when the—

So when you say ‘invalidating,’ do you feel like they just don’t understand what it’s like for you?

Yeah, yeah, I think so. Because you know, it’s all well and good to say to pace yourself, but you know when I’m struggling to, you know, shower, to get dressed in the morning, you know let alone getting to school and things like that, it’s like completely useless advice because I need...I needed more support than that, and I needed better advice and I just needed more because I just couldn't function anymore.

Evie thought her paediatrician was “useless” and offered no real support other than suggesting she start a blog and pace herself.

But I don’t think...I don’t think we got anything out of that at all. And then we had a phone call with the doctor sort of end January, which is when I got referred to the Long Covid clinic, but I was told that...not to get my hopes up, so...

Why did you think they said that?

I don’t know, she didn’t really seem to think that I would be able to get much support or they’d be able to help that much really, and then I saw my paediatrician around that same time and she was useless—

Was she? Was she somebody that...had you seen her before for something else?

Yeah, yeah, I’ve seen her quite a lot and...yeah, it was just the same thing for every doctor just saying to pace myself and to just keep swimming. I think she even told me like start a blog or something to share my experiences and stuff, but no real support. Because, you know, it’s all well and good telling me to pace myself but when I’m struggling to do you know daily things…

Evie needed her doctors to ‘really listen’ to what she was struggling with and not to ‘brush her off.’

Evie: I think you know more than anything: just listen, you know? Because you know, I was saying that I needed help and they were just giving the same advice that wasn’t helping me, you know? And I needed...I needed more, and I needed people to really listen to what I was struggling with and—

Mum: Validate.

Evie: —and validate my struggles, rather than just brushing it off as just Long Covid, something that’s going to pass, something that you just have to manage until it’s over. You know like I needed help then. I needed help now, and they were just saying, ‘Oh well, it will pass,’ but it...it might...it will pass, but I need help now because I’m really struggling and I can’t...I can’t manage it on my own, you know?