Faatimah caught Covid in March 2020 when she was in her first year at university. She didn’t have ‘typical’ Covid symptoms – no cough or cold symptoms. She didn’t think too much of it to start with because she didn’t know it was Covid. She felt very fatigued and demotivated and spent a lot of time in bed. She thought some of how she felt was because of the strangeness of lockdown. She just didn’t feel well.

Her fatigue, difficulty sleeping, and gastrointestinal issues continued and when she was back at university in 2021 she had brain fog and extreme tiredness after using cognitive or physical energy. Sometimes sitting up would make her feel unwell and she needed to turn off bright lights and noises and lie down to recover.

She had a lot of tests, and then was offered a test for Covid antibodies. She was surprised when she found out that she had had Covid. Her doctors suggested she now had Long Covid because of her symptoms and the positive antibody test. It was a relief to have a diagnosis that explained how she was feeling.

Faaitmah informed the university about her diagnosis but found that the university couldn’t fully accommodate her needs. She returned to university, with some adjustments in place, such as rest breaks in her exams, but these weren’t adequate. She missed in-person classes because it took too much energy to prepare and travel to the university.

Faatimah takes longer to finish her work which is frustrating for her because she is motivated to do well, but her abilities now are different to before she had Covid. It is emotionally taxing too because some things feel like they will never end. When she pushed herself in the lead up to her exams, she had a relapse and had to defer her exams.

She thinks it would be better if universities offered a spread of exams, or were able to offer part-time options, instead of making people choose between their health and a degree. She is looking for part-time work but is limited by not yet graduating and her ongoing symptoms.

Faatimah spends a lot of time in bed – up to 20 hours a day – sleeping, resting or doing things from there. She is surprised by how difficult it is to do things she used to do, even daily activities like shopping, cooking, personal hygiene, or exercise. Her friends have helped her. She finds a routine helpful although it doesn’t always go to plan. It is not possible to be spontaneous.

She has to plan how to use her energy every day. She tries to balance using too much energy by doing things she wants to do (like talking to friends), which then makes her feel unwell. She feels that she needs to still keep trying to live her life to some degree.

Her experience has been hard to talk about because it can be difficult to explain. Her friends are starting to understand through seeing her experiences and she thinks there is more awareness about Long Covid compared to when she was first affected. She finds it useful to explain her experiences as chronic fatigue caused by Covid, because the variation in Long Covid symptoms means people can have different ideas about what it is.

She finds it hard when people say she looks better because that’s not how she feels. Although she is managing better and there are times when she has fewer demands, Faatimah doesn’t feel anything has changed or that she is recovering.

She is frustrated not to have the same cognitive capacity that she had before. She would always have been motivated to do well before she had the challenges of her illness. Her capacity now to revise for exams is so limited.

She doesn’t want to catch Covid again, although she thinks she has still had Covid at least once more. She doesn’t trust the lateral flow tests. She is perhaps less worried about getting Covid again than some other people because she already has Long Covid.

Faatimah does her own research about her illness and how to manage it, using NHS websites and social media. She identified that her symptoms were like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and finds resources around ME/CFS really helpful. She finds social media useful for identifying resources and to hear about others with similar experience. Her doctor has been good and believed her. She was referred to a Long Covid clinic but had difficulties making contact and hasn’t started any treatment. Faatimah learned about pacing activities and managing symptoms through research and her GP, so isn’t sure whether the clinic would be useful.

She has had great practical support from friends and her family, and this and their understanding have been a ‘lifeline’ for her. Faatimah takes vitamin D, cod liver oil, and evening primrose oil but doesn’t know if they help. The last two are to help with symptoms around her period.

Faatimah encourages people living with Long Covid to be confident in their experiences and symptoms when talking to others, including medical professionals, and to believe in and advocate for themselves. She suggests looking up resources from people who have similar symptoms and keeping a diary of your symptoms. She found the ‘stop, rest, pace’ advice useful for managing fatigue. She would advise health professionals to be open-minded, aware of the power they have, and to make sure they are informed about Long Covid. For young people, Long Covid can precipitate a big change to their expectations for life. She thinks it is important not compare yourself to other people, or a version of yourself that doesn’t exist, and to take joy in the life that you have.