Abigail
Abigail is 13 and at secondary school. She caught Covid for the second time in July 2021 and has ongoing symptoms including chronic pain, breathlessness, and fatigue. Abigail also has hypermobility and ADHD. Abigail is back at school and starting to do more things she enjoys. She feels like she is recovering even though she still has a way to go. Abigail was interviewed in April 2022.
Abigail lives with her parents and two sisters aged 12 and 6. Ethnicity: White British.
More about me...
After catching Covid a second time in July 2021, Abigail was left with chronic pain—especially in her legs—breathlessness, and fatigue. She feels that already having hypermobility made it worse. She also developed bad pain in her jaw that was later diagnosed as a specific jaw disorder. She had been taking medication for ADHD which was helping with her sleep patterns, but new symptoms after having Covid led her to lose weight and her medication was stopped. That made her sleep worse until she could be restarted on it. Abigail was struggling to concentrate in school and falling asleep in lessons, and in December 2021 her GP said that she may have Long Covid.
Before catching Covid, Abigail was very active and loved climbing. She misses climbing and being able to join in with sport with her friends, but she feels she is gradually getting better and will get her life back. Abigail still uses a wheelchair sometimes, and her younger sister finds it hard to understand why she can’t run around like before. The family have adapted to starting later in the mornings, going to places that are wheelchair accessible, and having rest days to recover. It takes more planning. It has been hard to adapt to doing less, because having ADHD makes her mind very active and looking for interaction and activity. This is better now that she is back on medication for her ADHD and is building up the amount of activity she can do.
Abigail is back at school. A teacher that supports her with her existing disabilities put in place a series of measures so she can take breaks from lessons, miss PE, and avoid standing in line at lunchtime, which would lead to her getting tired. The school is well-equipped with special PE programmes for children with different disabilities and Abigail is starting to join in when she can. Her friends noticed the change in her and they have been supportive as they are used to Abigail and others having health conditions. She is starting to have more energy after school for visiting her family and reading but it can be difficult to spend time with friends because of all her health appointments. Abigail doesn’t mind telling her friends about her Long Covid to help them understand, but sometimes people can make her feel like she is being told off for something she can’t control, such as when strangers ask if she really needs her wheelchair or crutches.
Abigail’s mum contacted her GP who was helpful in identifying Long Covid and referring Abigail to a Long Covid clinic. She sees a paediatric consultant, psychiatrist, and physiotherapist every three months. Initially Abigail was a bit scared because of the newness of Long Covid, and not knowing how long it would last, but she has found the healthcare professionals that she sees to be really helpful and respectful. She works with the physiotherapist for the pain in her legs and is starting hydrotherapy. She also takes regular pain relief to help through the day and with sleeping at night. She has been using a pain scale to help her judge when to take a break from activities. She and her mum use social media sites to read about other young peoples’ experiences, but Abigail doesn’t use it much. Abigail has had two vaccines which reduces her worries about catching Covid again. She would encourage others to listen to their doctors and thinks that clinics should have appointments that don’t mean missing school. Abigail would like research to focus on trying to estimate recovery times.
Teenager Abigail wished there was a factsheet about Long Covid, but nobody really knew anything.
Teenager Abigail wished there was a factsheet about Long Covid, but nobody really knew anything.
Mum: Well, it was... and particularly in the beginning because you didn't know how long you were going to be ill for, did you? That was what was upsetting, is you... there was nobody could tell you... like with your other illnesses, people could give you a factsheet, couldn't they?
Abigail: But with this one nobody really knew anything. Not... so all like... like it was really strange because with like my ADHD diagnosis I was like I could ask the questions and they would answer my questions—but when my like Long Covid like diagnosis, they were asking me the questions and I'm not used to that, so that was very scary.
Abigail says that although strangers can be unkind when she uses a wheelchair, friends have been ‘very accepting’ and ‘respectful.’
Abigail says that although strangers can be unkind when she uses a wheelchair, friends have been ‘very accepting’ and ‘respectful.’
Interviewer: Do you think people understand what Long Covid is?
Mum: No.
Abigail: No. Like some people are respectful about it and like that’s OK, like because someone just says like... or like if I like... I say to my friends, like my friends are very respectful about it, if they just have an enquiry about like, ‘OK,’ like if they just have a question, I’ll answer it because they're being very like polite about it, but like if someone’s just like not being very polite about it like it’s a... you don't really want to talk to them because they're basically telling you off for something you can't control.
Mum: Like when... when we're out and about if she’s using her crutches or her wheelchair, we’ll get people challenging her—
Abigail: As to why she needs them. And it’s like... it’s... like because people have a very, very like stiff sense about wheelchairs, like sometimes if I'm out in my wheelchair I will stand up to do an activity and then I'll sit back down, and the people don't think that... like people think that if you're in a wheelchair you’re paralysed. Like they don't think that people can be in a wheelchair for other needs other than the fact that they... their legs don't work and my legs work, they just need help working.
Yeah, and the people that have challenged you, is that people you know or strangers?
Abigail: Just people in general.
Mum: Strangers, darling.
Abigail: Yeah, strangers.
Abigail learned about the pain scale from her physiotherapist, which helped her to work out if she could manage certain activities.
Abigail learned about the pain scale from her physiotherapist, which helped her to work out if she could manage certain activities.
Yeah, when I'm off my medication it’s harder because like it’s like my brain’s sort of like, ‘oh my goodness, we need to do things for us to...’ but when I'm on my medication it’s a lot easier because like I can... my brain’s like a lot... like less active so I can figure these things out more, which is a lot helpful, like I know because like... there’s like the pain... like pain scale, but like between like one and 10 and I know when I need to...like and I know now because like... of like all the help I've been getting, but if I get to a five or six, I need to start thinking about, ‘can I do this?’ And that has helped a lot.
Abigail said her school was “very on top of” ways to help her manage her Long Covid. She was allowed to leave class, including P.E., if she needed a break. She had an early lunch pass to avoid standing in a queue.
Abigail said her school was “very on top of” ways to help her manage her Long Covid. She was allowed to leave class, including P.E., if she needed a break. She had an early lunch pass to avoid standing in a queue.
School has now really helped, like my school is very good at like... with like... with like disabilities and stuff, like they were very, very like on top of it. Like I have a break pass, so if I'm ever tired in lessons, I just show the teacher this pass and like they can't say no to this pass, like I ha... like if... I basically with this pass, I could just... I could just leave, like they can't even say no, I just show them, and I can leave, so if I need like a break or a rest, I can just go. I am allowed to exclude myself from PE and go into the supportive study room and do like homework if I can't do PE. I have an early lunch pass so I'm not like standing at lunchtime and I'm just like eating instead of just standing outside and then standing some more, so...Yeah, school’s put a lot of systems in place, which is really helpful.
Amazing, how has that come about? Was that because you've said to them, ‘these are the problems that I'm having,’ or...?
Yeah, my... me... and I have... because they... basically everyone who is part of like... the... like who... like are regular in welfare, usually gets like a teacher that like administers like their like main care and like what... like what their needs, so I just talk to my teacher, [teacher name], and like she just said, ‘OK, well, if we put this and this in place, this will probably help you.’
Abigail’s friends have been “completely fine” with her having Long Covid and are very accepting.
Abigail’s friends have been “completely fine” with her having Long Covid and are very accepting.
What about friends at school, how have they been?
My friends are completely fine with it. One of my friends has [condition] so we're both just like sharing stories of being in pain.
[Looks at mum] What? I’m not using names! That’s really fun, so yeah, we... we're very good at like just... they're all very used to the fact that we could like... all of my friends are very used to fact that like me and a couple of my other friends have a lot of medical problems and if we come in one day and just say, ‘hey, I've got 500 problems,’ I'm like, ‘OK, that’s nice to know’ so like, yeah, school and my friends are like completely fine with it, they don't mind—they're very... just like, ‘OK, sounds fun.’
I'm sure that must help though, having people to talk to that kind of get it?
Yeah, like they're all very accepting of like everything, so yeah, it’s very helpful unlike primary school, but you know.
Abigail (13 years old) recalled how her doctor spoke to her kindly and respectfully, like an adult.
Abigail (13 years old) recalled how her doctor spoke to her kindly and respectfully, like an adult.
Yeah, that the...Long— the doctors I work with, they're all very lovely to me and they all like they're all very good at like helping me with like everything that’s going on and stuff, like if I'm like...they'll always ask me like, ‘Are you comfortable with this, are you okay answering this?’ They're very good at like respecting like my boundaries and stuff and it’s very good.
Abigail doesn’t want to catch Covid again for fear she would “plummet,” but says she’s happier now she’s been vaccinated.
Abigail doesn’t want to catch Covid again for fear she would “plummet,” but says she’s happier now she’s been vaccinated.
Abigail: I don't want to catch Covid again because I know I'll like plummet again and I really don't want that to happen. So, like if someone has Covid, I'm like really nervous because I don't want to have it again, but I generally just try and like not worry about it. Like I do worry about it obviously because I don't want to get ill again but like...
Mum: You were a lot happier after you'd been vaccinated, weren't you?
Abigail: Yeah, I was happy after being vaccinated because I know that I was like less likely to get Covid if I've had the vaccine, and like even if I do, it’s going to be like a lot less significant.