Ben

Age at interview: 14

Brief Outline:

Ben caught Covid for the first time in the summer of 2020. He caught Covid for the second time in December 2020 from school just before the Christmas holidays. He was diagnosed with Long Covid in September 2021. Ben has frequent headaches, chest and leg pain and fatigue and insomnia and has been in and out of school for over a year and is still not back full-time. Ben’s mum also has Long Covid. He was interviewed in March 2022.

Ben is 14 and lives with his mum and dad and two younger brothers aged 9 and 11 – his mum also has Long Covid.

More about me...

Ben caught Covid for the first time in the summer of 2020. He had it mildly but didn’t feel quite right till October. Ben caught Covid for the second time from school in December 2020, just before the Christmas holidays. In January 2021 he started to get more symptoms, frequent headaches, chest and leg pain and fatigue and insomnia. At the time he didn’t think it was Long Covid, just short-term effects of having had Covid for the second time, but by March he suspected he had Long Covid – it was diagnosed by his GP in September 2021. He was told just to rest and stay out of school. He was referred to a Long Covid clinic and he had found them helpful in building a plan for the future and he was prescribed melatonin for his sleep problems, but it gave him side effects. Ben has been in and out of school for over a year and is still not back full-time. Ben’s mum, who also has Long Covid, has been unable to return to work until recently.

Ben feels his Long Covid not just affects him physically but also mentally and has had a big impact on his learning ‘it just impacts in so many different ways.’ Some of his friends at school have been understand but he feels he has lost contact with others as he has been in and out of school for such a long time. Some teachers are supportive and say ‘do what you can’ but other are expecting him to keep up with the other students. He finds this difficult due to brain fog and memory problems, which doesn’t help with revision and tests. He concentrates on doing what he can in core subjects – “Some subjects I’m behind, but I’m still doing maths, English, science, computer science, I’m still making sure I’m on top of them really.  Just trying...” He has an iPad from school to help keep up with lessons.

He hasn’t yet been vaccinated as he is unsure whether it will make him better or worse. It has made his mum’s Long Covid worse, and he doesn’t want to risk that yet. He is less worried about catching Covid again.

While Ben and his mum have been ill his dad has taken over household chores and looking after his siblings, and they don’t really go out as a family at the moment. He knows that his youngest sibling has been very worried about his mum and brother being ill. Ben would like to get back to school full-time and back to doing clubs and activities, but is taking things day-by-day. He finds it hard adjusting to seeing people again and “I get like anxiety around people” which he thinks is not just due to Long Covid but also to the lockdowns and fear of catching Covid again and making his Long Covid worse.

Ben had a very inconsistent sleeping pattern because of Long Covid. He was trying to adapt it to create a more regular sleep routine.

Yes, so we’re going to start kind of decre... because at the moment my sleep pattern is... I can be going to bed from 10.30 to two in... two in the morning. I could be waking up from 10... 10 in the morning until two in the afternoon, so we’re trying to sort that sleep out, and that’s trying to... that... we’re going to try and sort out so just the general stuff really, no screens before bed, trying to do... trying to use stuff like herbs before bed, having... doing, like, exercise during the day to wear yourself out before bed, stuff like that.

Ben’s brain fog made it difficult for him to do tests at school, because he couldn’t remember information he had revised.

Yeah, you get your normal... oh, I forget something, but I’m getting it more. I just... I had a... I had to do some... a maths test and I did the thing on the same day, I’d... did revise and I knew what to do, but it was there but I just didn’t know how to do it, it was at the back of my brain but not at the front, so I just didn’t like... and I just forgot stuff, it was more than normal, I would have knew how to do that because I did it a few hours before, but it had just completely gone.

Ben says Long Covid “messes with people” mentally as well as physically. After being at home ill for a long time, he now gets anxious and is finding it hard to adjust being back around people at school and clubs.

For me, it affects just around people now, I can’t get... I get like anxiety around people, kind of, being in crowds really, being in school I, kind of, get worried of people just anywhere, it’s not even in school, just going out to places do... I get worried really and that’s... that... that’s like... I think that’s not from just... not... it’s obviously not from the Long Covid, it’s not from the illness side of Long Covid, it’s from the mental effects of being, like, off school, not being around in those clubs where you're around people all the time, not being in school when you’re around people all the time. Not... you're being in bed, you're kind of isolated I guess as well, so it’s all those isolation you're going to get... as soon as you go back into that, it’s hard just to adjust again really, and it’s... I’m still finding it hard to adjust... get... going into school, going to see my friends again, it’s still hard for me to do that really and not really get nervous.

Ben noticed that sports and afterschool clubs drained his energy, so he has stopped doing them.

So, I... before I used to do rugby and football. Rugby’s out of the question because it’s contact, that’s... I haven't done that at all since I’ve got it. Football, I’ve been doing a little bit, it’s less contact, but I’ve stopped doing that in the last few months, oh, I did, like, spells of training sessions with a few, but no, I haven't really been doing stuff like that, and they were the main things that I dropped because I was doing those quite a lot, every week, and even afterschool clubs as well, so I’ve dropped a lot of that stuff just because of how much it will drain my energy and it... it will make... it will definitely make me worse. When I was doing it was making me a lot worse the few days after I done it. I had the football training on the Thursday night and then the next few days and over the weekend I felt terrible, so I just made sure I just stopped doing that until... I’m hoping I can get back to doing that, but it depends how quickly I can recover, and I’ve already had it for a year and a bit now, so I don’t really know when I can get back to stuff like that.

Ben prioritised staying on top of “core” school subjects, like English and science, but to save “brain power” he didn’t work on art and drama.

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

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

Ben was expecting a quick recovery which didn’t happen.

Yeah, they thought we’d get better very, very quickly and it will be all fine, and about...they thought we better by June, July, and that would be it, but I continued to really have it through the summer and then when it came to September again, to start the new school year, I’d still have...and I was still really, really bad with it.

And when you spoke to the GP about it, do you feel like they were helpful, did they know what to do, did they think it was Long Covid or did you have to tell them what you thought it was—?

At first I didn’t really think it would be bad and it wasn’t...They didn’t think kids could have it at first, they didn’t know, they just thought adults could have it, so they didn’t really know what to do at the start and they...I don’t think they were very helpful trying to solve the issue but I don’t think they really knew what to do with me to be honest, because they didn’t know if kids could get it, they didn’t know if it was Long Covid or not, but when it kept going on and more research kept happening, they knew kids could get it, and then...yeah.

I think they more talked to my parents about...I don’t think they really understood what was going on with me to be honest, I don’t...I think they just thought it would get better really quickly, they thought it was fine, I didn’t really need to be prescribed anything really or need to...or need to be helped in any way. I just thought we’d get better and that would be it, but they didn’t really talk to me personally [sighs], they just more talked to my parents and tried to resolve it and it didn’t get resolved.

Was that okay with you or would you have preferred they had talked to you?

I prefer they tried to go, yeah, more direct and just try to do some more tests really, try to prescribe something because it was...it was affecting a lot; like my sleep, the headaches was increased, I was getting joint pains, so if they’d prescribed something for any of those, that could have helped a bit, but they didn’t, so I would have preferred they would have tried to...tried some, something like that, or tried some kind of treatment.

What did they tell you to do or was it basically, ‘We don’t know’?

Yeah, “We don’t know.” Just really rest and you can stay out of school, but you've got to just rest, but they didn’t really know what else to prescribe to me, they just said, “Rest,” that’s it, “We can’t...we don’t really know if we should give you medication, we don’t really know if we should prescribe something like acupuncture, we don’t know what to do with you; just rest.”

Melatonin didn’t work for Ben as it was causing him side effects, but he thinks vitamin D and B12 have definitely helped his sleep.

Yeah, we went to one yesterday, we went to a meeting at the Long Covid clinic and that was...they’re going to...we tried melatonin for my sleep, and that really didn’t...that didn’t work, so we’re just trying to go...we’ll try and, kind of, build a plan really for the next few months for school-wise, just getting more out of the house in that aspect, my sleep as well, my screen time, stuff like that, just trying to do sort...a clear plan really for the next few months.

Yeah, sleep has been the main instigator of Long Covid as a whole for me; it’s been the sleep, the sleep, and the sleep. I can’t get to sleep, I can’t get up when I’ve fallen asleep in the morning, I’m just falling back to sleep when I’ve woken up. We tried the sleep medication like I said, and it didn’t work, so we’re going to see how we go.

No, because with the melatonin, it was helping me get to sleep, but in the day for...I don’t know why, but in the day it was making me...it was more frequent, it was stomach aches, it was different pains in different parts of the bodies, it was more frequent headaches, it was...I think it was instigating the other things. It did...it was helping the sleep, but it was affecting the rest negatively, so.

We’ve been trying stuff, so I’ve been taking vitamin D, B12, C, zinc just...you know, they’re—they will help you when you take those, they have been helping me especially vitamin D and B12, definitely.

Ben is getting less worried as time goes on. He sometimes wears a mask when he’s out, but it depends on the situation.

And because you have Long Covid, are you worried about catching Covid again?

To some extent, yes I guess, but I don’t know if I do get it again because I’m already quite bad, I don’t know if it would make it even worse, but I don’t really know [sighs]. I am kind of worried but not as much as I was before. I think I’m...as I’m getting better, I’m less and less worried. I kind of do, sometimes I wear a mask but I’m not either/or, I’m not really worried to catching it I guess. I think only in school really because of the...everyone’s together, but in like a small supermarket where there’s not really anyone in there, I don’t really bother with the mask because there’s no one in there, so...but if it’s in the school where there’s loads of people everywhere and they’re all crowding onto each other, I think I’d...yeah, I do.

Ben has Long Covid and says he is going to wait to have a Covid vaccine until he is nearly better. He says, “it could make it better, but it could make it worse.”

At the moment, I haven't taken any, just because we don’t know how it will affect the cells really, we don’t know how...it could make it better, but it could make it worse. We don’t really know what to do on that aspect, and we don’t really know how to approach it, because what happened with my mum when she got it, it made her worse, but it could make me better, we don’t really know, so I’m not going to take them until I’m, kind of, nearly better because you don’t really want to take that risk yet.

Yeah, and have you heard of other people aside from your mum taking it and it being worse or better?

Yeah, some people...yeah, just from like the groups really. So I had this...like a Long Covid...like a Zoom basically with kids in it with people with Long Covid, so some people had taken it, but they’d been worse, some people had taken it and it made them better, some people had not taken it at all because of the same reasons as me, so it’s a mix really, that’s why we don’t want to take the risk because it could be a bad...it could be negative or positive if we don’t really know what’s the risk there.

Ben wanted to get back to “doing stuff” and being in school. He still wanted to find out how long he would be affected for.

I don’t think I’m worrying that much. I think I just want to get back to doing stuff really. I just want to do stuff I was doing before, and it...I want to be in school, I don’t want to be out of school, and I want to be doing the club activities out of school, doing my hobbies and stuff like that, I want to be going out and just doing things and not being stuck in the house, and being in bed and for the whole day. That’s...I don’t know if there’s a...and I haven't really got a clear aim at the moment, I’m just hoping I get better and going from there, and taking it, kind of, day-by-day really.

Yeah. And with...you know, there’s still lots unknown about Long Covid, that’s why we’re doing this kind of work. What sort of things would you want doctors or scientists to find out?

I think finding how long it can really affect...I think this is something you can’t find out now, but in the future, just finding how much it does affect you really and how it can affect you in all different way, just finding out which...where it can affect you in your body, how long it will affect you. That will take ages as it’s only been around two, three years now really, Covid, so, stuff like that really. Finding out what treatments are...and medication you can...are the best for it really, treating different things. I think the key thing is the treatments for it because if you can get a quick treatment for Long Covid, if you can get the treatments for different parts of it, you’ll recover a lot quicker.

Ben advised that people ‘try not to worry’ because there isn’t a ‘clear path’ yet. There will be good days and bad days.

I think try not to worry I guess because...well, try not to think about the future as much as you do because you haven't really got the clear path, whether you might think you're going to get better, but if you try and...I think, say to yourself, I’m going to get better, I can do—on a good day I can do a lot, you can’t really push yourself, just try and find a boundary where you can do stuff like going for a walk but you're not pushing yourself so much that you are going to go on the…you're going to be crashing from day-to-day, you're going to be having a good day and a bad day, and a good day and a bad day, or you have bad days in a row. You’ve got to just have a routine really where you're not pushing yourself too much and you're taking it slower, and just try not to worry about stuff. You need to make sure you've got your support network really as well, so you've got people supporting you and you've got a clear plan for school, I guess, because sometimes they might not be as helpful as mine have been. They might be trying to push you in, you can’t let...you can’t listen to the school if they’re telling you to come in for attendance, you've just got to do what you can for school, do what you can for exercise, just don’t push yourself so you're falling off a cliff really.