Evie

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 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.

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

Age at interview 15

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.

Age at interview 15

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

Age at interview 15

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.

Age at interview 15

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

Age at interview 15

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

Age at interview 15

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.

Age at interview 15

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

Age at interview 15

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.”

Age at interview 15

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.

Age at interview 15

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.

Age at interview 15

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

Age at interview 15

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

Age at interview 15

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.

Age at interview 15

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.

Age at interview 15

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.

Age at interview 15