In July 2020, Gracie developed smell and taste changes. She went on to develop many more debilitating symptoms over the next few months and has been diagnosed with PoTS (Postural Tachycardia Syndrome -an abnormal increase in heart rate that occurs after sitting up or standing). Gracie was unable to return to school for most of Year 6 and is now only attending school for a few hours a day when well enough. Gracie was interviewed in March 2021 with her mother, Claire.

Before having Covid, Gracie was never sick and was a happy, healthy 10-year-old. She wasn’t ill with Covid, but in July 2020 a change in smell and taste alerted her to having Covid. This change in her senses lead to weight loss as she had trouble eating anything as it all smelt or tasted unpleasant.

Other symptoms followed in the next months including unexplained bruising, bad eczema, fatigue, sleep problems, bone pain, brain fog, and headaches. Returning to school in September was very challenging and soon Gracie was too fatigued to go to school. She was referred in October by her GP to a community paediatrician – “She was really good because when I went to see her, as soon as we saw her, she was like, ‘That’s long Covid,’ and, you know, so that can, takes quite a while, but it was really quick and I’m very thankful.” But Gracie’s mum didn’t feel they were doing enough so pushed for more specialist appointments to deal with Gracie’s symptoms. She saw ENT (Ears, Nose and Throat) specialists to check on her continuing change of taste and smell; a dietician to help with her eating problems; and a dermatologist for her skin problems.

In October 2020, Gracie started to develop symptoms of PoTS (Postural Tachycardia Syndrome) which caused dizziness when standing and a sudden high heartrate, as well as made Gracie faint, but although Gracie had an MRI, it took 7 to 8 months of her mum pushing for a referral before they saw a cardiologist who diagnosed PoTS.

In November, Gracie developed more symptoms: rashes, hair loss, and problems controlling her temperature. Further symptoms developed in December and January including tinnitus, Covid toe, bone popping (her rib popped out on Christmas Eve), iron deficiency, OCD behaviours, motor ticks (previously very minor but became severe and she has now been diagnosed with Tourette’s) and ADHD symptoms, where she is restless all the time and can’t follow a conversation.

Although there is no Long Covid clinic for children in their area, they feel they have had good support from medical professionals, especially their GP and clinical psychologist, but find the lack of treatments available frustrating. Gracie’s mum, Claire, feels that medical care has been down to her persistence, never giving up, and doing her own research. She says, “Every time you went you would get told, ‘We don’t know enough about it,’ and I mean that’s still ongoing now, nearly two years, two years in, but as time’s gone on and I’ve done my own research and I’ve been able to go back to her and say, ‘Right, this is what I think,’ then she has listened.” She likes their GP and feels they have a really good relationship with her, saying, “She’s the only one that’s ever taken time to ask how I am.”

Claire kept a timeline of Gracie’s symptoms, and although some symptoms have been remitting and relapsing, her mum says, “When you look back, it’s horrific.” Gracie didn’t go to school for most of Year 6, and even now has only returned to school for a couple of hours a day, which she still finds exhausting. Gracie was scared she’d lose her friends, as some have had difficulty understanding her Long Covid symptoms, “But I do have good friends and some of them understand.” Gracie sees her clinical psychologist every two weeks and says, “She’s helped so much” and keeps her chilled, especially in helping accept the current level of her recovery, which she described: “I think we’ve kind of plateaued, I think this is what I think is as good it’s going to get.” There have been no massive improvements to Gracie’s symptoms, and they are just trying to find ways to accept it. Claire says, “You feel hopeless that you’ve had a child that was the life and soul of the party. She was in a running club…Yeah [laughs]. To now, she still a lot of the time now, finds it a struggle to get out of bed.” The “worst” and most limiting symptoms Gracie has are still her PoTS symptoms: dizziness, fainting, and fatigue.

Gracie’s illness has affected the whole family, especially her younger brother. Claire says, “He likes Gracie to be there if we’re doing something, but Gracie a lot of the time can’t be there and it’s, he’s had to not do things because Gracie’s having a really bad time.” He tries to understand but finds it difficult. Claire was a newly qualified social worker and just about to start work when Gracie became ill and now has become Gracie’s full-time carer, saying “I mean even on the days that she can get in, into school, them few hours, it inevitably she’s there an hour and the phone goes, she’s fainted. Can I come and pick her up? So, you can’t go anywhere, you can’t commit to anything.” They live day to day as “planning things is just, it’s pointless, absolutely pointless,” but she does worry about when she will be able to go back to full-time work and help financially.

Gracie describes her Long Covid as, “So you know when you’re in maze and like you turn around the corner and like, ‘Oh, this is going to be the end,’ but it’s just a dead-end: that’s what it feels like.

Gracie’s mother appreciated it when a healthcare professional believed her daughter’s experience of symptoms and also recognised that it was hard having a family member with Long Covid.

Age at interview 11

Gracie’s mother Claire said that they have a ‘fantastic’ GP, who was the only professional who checked in on how she was managing, as the mother of a teenager with Long Covid.

Age at interview 11

Gracie and her mum found it hard to think how she had been before she was ill. Gracie’s mum said, “every day’s like Groundhog Day.”

Age at interview 11

A clinical psychologist contacted Gracie’s school to arrange for her to reduce to half-days at school. Her attendance at school was down to 23%. She felt stressed and sometimes felt she was behind everyone else.

Age at interview 11

Gracie described PoTS, where you experience an increase in heartrate when you stand up. This caused headaches and fainting.

Age at interview 11

Gracie had times when she was so hot, she felt like she was ‘out in the desert’.

Age at interview 11