Beth

Age at interview: 36

Brief Outline:

Beth’s primary school age daughter was “quite poorly” with Covid in March 2021, experiencing fatigue, breathlessness, and persistent coughing. She developed a secondary infection in her lungs and spent six months going back and forwards to the GP with repeated chest infections, being treated with antibiotics, and being told it takes time to recover from Covid. After six months, Beth requested a referral to a paediatrician, where an X-ray showed a deep-rooted infection in her lungs and inflammation. She now has a treatment plan with three-monthly appointments with the paediatrician. Taking montelukast and using a Ventolin inhaler is helping Beth’s daughter to participate more in activities, both in school and outside school. Managing her fatigue takes planning and affects what they can do as a family. Beth says it’s a relief to have a treatment plan and they “can start to move forwards.” Beth was interviewed in April 2022.

Beth and her husband have two daughters and live on the Isle of Man. Their primary school-aged daughter caught Covid in March 2021 and is being treated for Long Covid symptoms by the paediatrician at their local hospital. Ethnicity: British Manx.

More about me...

Beth’s daughter was “quite poorly” with Covid in March 2021; she had persistent coughing, shortness of breath, and fatigue. After a month she was continuing to cough and not recovering.  She was back and forwards to the GP where they examined her and told her “It takes time to recover, give it a bit longer.” This continued for six months. Beth was worried about how often her daughter was needing antibiotics, so she started searching for some information about Long Covid in children on social media. Through a Long Covid Facebook group she found information and support which led her to request a referral to a paediatrician. At that point, her GP referred for a chest X-ray which showed there was still a deep-rooted infection in her lungs. She had another course of antibiotics, and a second X-ray a few weeks later showed there was a lot of inflammation in her lungs. She was referred to a local paediatrician.

When they saw the paediatrician, it was explained that Beth’s daughter had inflammation in her lungs, and they were going to try ways to control it to help her cough and shortness of breath. She is now taking montelukast and using a Ventolin inhaler. She has three monthly appointments with the paediatrician to see how the medication is working and repeat X-rays. She also has a paediatric care plan for school. Beth says it’s a relief to have a treatment plan and they can “start to move forwards” and for her daughter to get “the help and support she needs.”

Since starting on the Ventolin inhaler and montelukast, Beth’s daughter has been able to participate in activities more but still finds P.E. lessons, school swimming lessons, and playing with her friends at the park difficult. When she needs to have a break during school P.E. or swimming lessons, she is allowed to take a break to rest. At the beginning, there were times when she would not feel well enough to re-join the classes but more recently, she is able to participate more. Beth says that school has been very supportive and flexible. She uses her inhaler a lot during sports to help her join in because she doesn’t want to feel different from her friends.

Beth’s daughter’s friends at primary school find it difficult to understand why she can’t join in with activities so much and needs to rest. Being an invisible illness, it is hard to explain to young children.

Beth has experienced mixed responses and understanding about her daughter having Long Covid; some people have questioned that Long Covid exists, and she felt at times people thought she was making it up. Since seeing the paediatrician and having her daughter’s symptoms confirmed and an X-ray taken, attitudes towards her have changed. Beth thinks there should have been a quicker referral to the paediatrician and that her GPs were insinuating Long Covid didn’t exist, and she was jumping on the ‘Long Covid train,’ that this was not what her daughter was experiencing.

Beth and her husband have needed to use their annual leave when their daughter has been off school ill. Her husband has no annual leave left to spend time with their older daughter during the school holidays. They know there may be times in the future when they will need to take unpaid leave which would be tricky, so they are thankful there is a treatment plan in place now.

Beth attended a workshop with others in her community about support services for Long Covid patients and was amazed to see how many people attended and had similar experiences to her. Shared experience helped her to know “you’re not going crazy.” She says to others not to give up on their fight to be heard as you know your child and often a mother’s gut instincts about their child are right.

Beth’s eldest daughter is understanding of the impact her sister’s Long Covid symptoms have on family activities and tries to take care of her and reminds her about taking her medication and having her inhaler with her. Beth and her husband work as a team; through needing to plan things more as a family and talk about it “openly and honestly” together, her daughter’s Long Covid has brought them all together more.

Beth’s daughter is slowly able to do more. Beth says she is very resilient, has a “can-do attitude,” and wants to try to do more. Having her inhaler to support her when she has shortness of breath helps her to feel confident. They often don’t know how much she can do with some things – for example, her Christmas dance show which she really wanted to take part in – so they just give it a go. Currently, Beth’s daughter has to miss out on a lot of things outside school; playdates after school are too exhausting for her and for birthday parties, like roller skating, she can only manage for ten minutes. As a family they are constantly managing activities to reduce her level of fatigue so that it has less impact on school.

Since having Covid, Beth’s daughter’s struggles with some aspects of schoolwork like reading or taking longer to write stories.

Beth would like to see support for mental health and wellbeing as well as the physical aspects of Long Covid. She has noticed a change in her daughter’s mental wellbeing and as it continues it is becoming more of a worry. Beth thinks mental health support should be an integral part of the Long Covid services that are offered to people.

It was hard for Beth to pinpoint when her daughter’s Long Covid symptoms started.

So, she contracted Covid in March ’21. She was quite poorly, she needed some medication, she needed some antibiotics because she got a secondary infection in her lung at the same time, and she never really was well after that, and so… backwards and forwards to the GP, it... it was... we were just told, you know, oh well, it takes time to recover, you know, give it a little bit longer so that... you know, then a week, and a month, then... so I guess from day one I kind of realised, oh OK, well, this isn’t going away, this... this is something that... that just... you know, she is continuing to cough all the time, constantly kind of clearing her throat. There was a definite issue where she just didn’t recover.

So yeah, I guess sh... I knew straightaway, you know, it’s... it’s hard to kind of pinpoint a... a specific time because she just didn’t get better.

Beth’s young daughter’s friends think it’s a “made-up thing” and find it difficult to understand why she needs to rest, can’t go swimming or might be feeling grumpy at times.

Like, almost because it’s not visible, you can’t see it, so they’re like, ‘oh, why do you need to sit down? Why are you going again? What are you do...’ you know, ‘why aren’t you doing swimming? ‘Oh, why do you get to stay behind to not do this?’ or... and I think... they’re only eight, so the under... the level of understanding and the... and the maturity level is very different, isn’t it, to... to that of an older child. So, I think because none of it is visible, it’s very hard for them to kind of understand why she needs to kind of take a break, or why she’s tired and... and maybe a bit grumpy with them that day, or if she’s done PE, it can affect kind of the rest of her afternoon at school and how she sort of responds to people. So that... you know, that has an impact too, but for their understanding, I think they’re... they’re so little still, that it’s... it’s quite difficult for them to... to know what... what it all is and what it’s all about.

Yeah, and has she spoken with you about that?

Yeah, there are times where she said, “People don’t believe me, people think I’m making it up,” so she can get quite upset. She’s... she’s a very resilient child though, so she will just kind of get up and get on with it and keep going. She has her moments of you know being upset and she’ll say, “Oh Mum, no one... no one’s playing with me today because they don’t believe me, they think I’m making it up, they think I’m saying things that are not true,” but said, “but Mummy, I can’t breathe,” I’m like, “I know, it’s OK.”. So yeah, that... that’s been quite tricky.

And what about your peers, or your social circle, how’ve they reacted to it?

Very mixed I would say. Some people have been massively understanding, you know just available to... to chat to and... and really kind of, ‘yeah, we get it, you know, it must be really difficult.’ Other people, again, similar, ‘does Long Covid even exist? Is it even a thing?’ you know, ‘is it not just that she would have been poorly anyway?’ Not really understanding that Covid can do this and that she hasn’t really recovered, like maybe I’m overreacting, you know, do you... you know, ‘are you seeing something that’s not there?’ I guess that was more so before we saw the paediatrician because we obviously weren’t getting anywhere with the GP, and I guess I even felt like they felt that I was you know making it up in a way, and I wasn’t believed until the chest X-ray kind of confirmed, yeah, there is a problem and here it is and this what it is. You know, my social circle can... the attitudes have changed slightly now because that is there, it’s on a paediatric... you know, she’s had a paediatric care plan for school that it’s all official, so I’m not making it up, but it... there was an element of that for a good while.

Beth and her family worked together to support her daughter by including the children in decisions and adapting their plans to support her daughter’s needs.

So yeah, it’s less now, but things are a little bit more controlled and we obviously as a family have taken into consideration that there is fatigue, there is you know the shortness of breath, the different things, so we’ve kind of adapted what we do as a family to support her needs, so in order for her not to get too fatigued, we’re putting things in place all the time to make sure that she has those [inaudible], she has that recharge, so that it impacts school less.

And then obviously having the inhaler to support, because... because when she’s getting shortness of breath, she’s then... there’s almost an anxiety around it with, [breathes in] ‘this is happening, ohh,’ where now she knows, ‘oh, OK, I can take my inhaler, it’s OK, I’m resilient, I’ve taken my inhaler, I can do this,’ she’s a very can-do attitude, so I think when you bring it altogether, she is able to kind of you know, not have as much time off, but that is a work in progress from different things that everyone’s putting in place. So school are more aware of it and what she can do and allowing her the times that she needs. We are very much aware of it, so we consider what we’re doing as a family, and you know with... with having the paediatrician support, her needs as well, so yeah, it’s steps in the right direction.

Yeah, generally we’re all... because it’s just us we are just like a little team, so yeah, suggest... you know, they make suggestions, we discuss how we can get around it, what... you know, how long can we be at such a place for, what will we need, how will we do that? So yeah, it’s just like we kind of team decision. But yeah, I think just being open and honest with each other about the difficulties that are there and you know having the kids be involved in that, because they had their own difficulties, if we share that together, then there’s more option of a solution, so if we didn’t include them, we wouldn't know what each other was thinking, you know, ‘oh no, I really don’t want to do that today, I don’t feel up to it, I don’t think that...’ you know, or... I don’t know, there’s... there’s lots of scenarios. But yeah, generally we just... we are... we’re a little team that kind of discuss it open and honestly together, just whatever we’re planning really.

Beth says her daughter’s mental health is suffering as she is not able to do the things she used to do. She says it’s caused anxiety and is frustrated that no one is helping.

With... when I was talking to you earlier about doing... her doing PE lessons at school and swimming lessons and things, when she has a struggle and needs to go and take her inhaler, or she needs a rest break and things like that, when she comes home, it’s almost caused like an anxiety that she never used to have, where she’s...like she’ll share that she’s embarrassed that she has to have the rest breaks, that she can’t be the same as her peers when once she was, where she was able... you know, like it’s that age where she’s noticing that there’s a difference, and...especially swimming, that she really struggled, she was great at swimming, like real water baby sort of thing, and then she can’t even get like halfway across the pool, where she used to be able to do four lengths.

So, it’s that embarrassment as well. Like, ‘people are looking at me, people... people are laughing at me,’ I don’t... and I don’t think they are, they... you know, I’m pres... and I’m hoping they’re not, but it’s that internal impact on her mental health wellbeing [inaudible] and so although she had the impact to her lungs and... and there’s this and there’s that, you... you can’t necess... you're not... and we’re not getting a treatment plan for any mental health issues or no one’s really looking into her wellbeing and how that’s been affected. So yeah, great, we’ve got a problem with the lungs, here some medication let’s see if it fixes it, but you know as the time goes on, the more and more I’m noticing the impact on her mental health and wellbeing, that’s becoming a bit more of a worry. So, I just think it’s important to kind of raise that as well because Long Covid may not necessarily cover those kind of things because it’s... it’s a... it’s slightly different, but they’re mental health difficulties that have come as a result of the impact of Long Covid, so I do think that... yeah, that those kind of things... I don’t know, you know when you look at Long Covid clinics and services and things like that, that should definitely be part of those kind of services for people.

Beth’s family either live abroad or work full-time so are unable to provide help.

We don’t have any support. My family actually live in the UK, so they are obviously not here, and my husband’s family are on the island: his two brothers work full time, so there’s no... you know, through no fault of their own, no support there, and his parents, one works away, so he works and lives in Colombia, and my husband’s mother is paralysed so is unable to care for our children at all really, and that’s kind of the extent of the family that... that are here, so, no [chuckles].

Yeah, short answer—

In a short answer, no, yeah.

Beth described how her daughter was determined to take part in her drama club’s Christmas show. She has to miss out on playdates and birthday parties sometimes.

Oh yes, so she did... so she... she loves doing drama and she does a musical theatre class, so she had to miss that for quite a while because they... you know, they... they perform shows, only like little ones, which are really lovely, but she had to miss quite a lot of her lessons just from not being well enough to go, you know being on antibiotics, just not... no energy, and then... anyway, she... she finally started going back, which was great, it took its toll and she... she was like, “I’m going to do a show, I want to do the show, I want to do the show,” so this is like... like a little Christmas show, anyway, the teacher was like, “Do you think it’s a good idea,” you know, “I’m more than happy to have her in the show, we really want her to be part of it, it’ll be great, do you think she’ll manage?” and I was like, “No, I have no idea, but there’s only one way to find out, she really wants to do it, she’s resilient, we’ll give it a go.”

Anyway, she did do the show and there was a big... they did two shows, there’s like a morning one and... and an evening one, and in the evening one, she was just like swaying and this like scotch of children are altogether, and we could just see her like, ‘oh, she’s going to go’ [laughs]. So, they had to do... do a lot a little break and... and we had to take her outside and... yeah, so there’s... there’s loads of little things like that, that are funny stories now, but at the time I’m thinking, ‘oh my gosh’ Yeah, so she does that, she does this club, and you know she’s had to miss lots of that. Playdates with her friends has been another thing that she’s missed, she just... she’s shattered by the time she finishes school. She’s grumpy, who would want to play with anybody that grumpy [chuckles]. So yeah, she’s not been able to do playdates or anything like that so far that’s still kind of off the cards at the moment. But yeah, birthday parties, depending what the kind of activity is, depends on whether she can go or whether she participates for part of it and not the rest, but that in itself actually is quite complicated for an eight-year-old.

So, things like roller-skating parties that her friends are really into at the moment, she can maybe do 10 minutes out of the hour, and then watching your friends skate round having fun for the next 50 minutes sucks. So yeah, those kind of things I guess is... yeah, what she’s had to miss out of on over time.

Beth’s annual leave could only be taken at fixed times. Her husband was using his leave to cover days when their daughter was too unwell for school.

I guess it’s been tricky because she’s been off school so any time off, she obviously needs a parent to look after her, so then it... then it impacts on your... on my work or my husband’s work; we’ve had to kind of share the time off. So, my boss has been pretty flexible, I do not have a job where I can work from home [chuckles]. So that’s been quite difficult to manage. She’s been very flexible in trying to allow me to work from home at certain times when there’s been tasks that I can do at home. That’s not always an option, so my husband has had to take annual leave in order to look after our daughter, which then, that impacts on us being able to spend time as a family. Yeah, because it’s either using the annual leave or taking unpaid leave. So, we’re both in a position where to care for our child, either one of us would have to take unpaid leave. He can take annual leave to take care of her, I can’t in terms of contract, so I’m bound by my contract to be in, so I don’t have that same opportunity and flexibility around annual leave, so it has had to come from... from his annual leave.

Yeah, and what happens when his annual leave runs out?

Yeah, so eventually, if that’s the case, and it would... we would... one of us would have to look at taking unpaid leave and to take care of her, so any relapses in kind of chest infections or just a bad day, if she’s more fatigued than usual, there’s... there’s lots of different reasons why she could be off school. So yeah, but the only option we would be left with is... is unpaid leave, which opens up a whole new world of complications.

Is that something that is like a real threat at the moment, or are you trying not to think about it?

It could be a case of trying not to think about it. We are just starting... my husband is starting a new holiday year from April, so we’re a bit like, ‘oh, we made it, so you’re kind of floating again almost, we’ve got a new set of holiday entitlement to kind of get us through, but how long that lasts, I don’t know. So we’re kind of feeling OK about things at the minute, but who knows.

Beth says her relationship with her husband has not been affected by their daughter’s Long Covid. They’ve been through tough times previously and this has brought them closer together.

We’re quite good as a team. We’ve been through... or... this is totally off-topic, but just... just for context: my 12-year-old was hit by a car when she was four so we went through like a really traumatic time, and actually working through that, if you’d have asked me then, I would have said, ‘mm, well actually...’ but because that’s happened and we’ve had to kind of work together and we’ve had to do lots of different things to build, that actually this hasn’t had a strain on our relationship in a way, because we’re like, ‘right, we can do this,’ you know, ‘we... we got through that, that’s fine, you know this is just another kind of tick in the book,’ ‘let’s go,’ sort of thing [chuckles]. So actually I think it’s brought us together more as a family because we... we have to kind of discuss things more, we have to plan more, yeah. I don’t think there’s really... that’s... that’s a really boring answer, isn’t it? But no I don’t think there’s been any strain.

Beth’s older daughter has been very understanding about her younger sister’s Long Covid, but Beth suspects “there will always be that underlying frustration.”

She’s... she’s been really good actually. She does understand, you know, she’s... she’s quite a mature 12-year-old, so she understands that sometimes we can’t do certain things, sometimes things take longer because she’s got up and... and not been having the greatest morning, but you know we might have to wait till the afternoon to go out and do something. Yeah, she’s... she’s very understanding, but underly... you know, there will always be that underlying, frustration I guess. But no, generally she is very understanding of her sister and you know she said, “Have you taken your tablet today? You need to make sure you take it,” almost like mothering her a little bit, you know, “you need to make sure you do this, and have you got your inhaler? We can’t go out if you haven't got your inhaler, you need to make sure you bring it with you.” So yeah, she... she has been great, but you just feel for her.

Beth has seen some improvements in her daughter, who uses Ventolin and montelukast, but is keeping an eye on her for potential side effects including behaviour changes.

At the moment she is on Ventolin inhaler and she takes a tablet every night, montelukast. But there is some concern around that medication, the montelukast, just because it can cause behaviour changes, changes in mental health, so we’ve kind of got a behaviour chart that just...I’ve found myself online, just to kind of monitor any differences, any changes, and there have been a few, but not significant, so we’re just kind of...we’re just keeping an eye on things at the moment and just trying to bring it all together. Since starting on the montelukast and the Ventolin inhaler, we have seen some improvements, it’s still there, there’s still difficulties, so she does still struggle with activities, but she can participate more than she was before.

Beth is hoping that vaccinating her 8-year-old daughter will result in less severe symptoms should she catch Covid again (interviewed April 2022).

I think the experience of having Covid, all four of us pre-vaccine, when you know we...none of us were eligible at that stage, that whole experience was pretty horrific, and I guess for me I’m like, ‘If that can protect me from ever experiencing Covid in the same way or protect me from developing different things as a result of Covid, then I’m all for it.’ If it can do the same for her, and protect her from suffering in the same way, or a similar way, then yeah, I’d 100%...I know, you know, she could still get Covid, but if it just didn’t have the impact that it did initially, yeah, I’d definitely want her to get it.

Beth wanted other parents to know that they are not alone, and they shouldn’t give up fighting for what they believe in.

That you're not alone. That you should never give up fighting for what you believe in. You know what’s...you know your child, and you should trust your gut instincts. Usually a mother’s gut instinct is right [chuckles]. And yeah, not...just not to give up on the fight I guess to get heard.

Beth thinks that a specialist in mental health should be part of the team providing support for young people at Long Covid clinics.

They’re mental health difficulties that have come as a result of the impact of Long Covid, so I do think that...yeah, that those kind of things...I don’t know, you know when you look at Long Covid clinics and services and things like that, that should definitely be part of those kind of services for people.

 

Like having some sort of mental health and wellbeing support within the team of people who are part of that clinic?

Yeah, like maybe a specialist in CAMHS or an educational psychologist, you know, based on how things are going. You know, some people may not need support. Some people may be absolutely fine, but you know knowing that there would be somebody there that could support, you know I just think that would be massively beneficial. That’s something that I’ve spoken to a few people about actually, where mental health has been quite a big thing, but they’ve not…and I guess we’re maybe similar, not been raised as much, because you...you want the other symptoms kind of dealt with first, and they always come...the mental health comes secondary, but actually I’m not sure that should be the case.