Before Covid, Sarah had a full and busy life. She was juggling several part-time jobs in addition to being an engaged mother. She was also very active and sociable and kept fit by playing tennis, running, and attending fitness classes. She says she is now “a shadow” of what she was before. She feels like she has to hold back from being her usual busy, “bubbly” self. Sarah’s husband, children, parents, and friends have all been very supportive throughout her illness. She feels “privileged” in some ways that she is better than some other people with Long Covid, but her symptoms nonetheless still dominate her daily life.

Sarah initially felt unwell in the lead up to Christmas 2020. She remembers not feeling like eating her Christmas dinner and got tested when she developed a cough on Boxing Day. She received a positive result the next day and the other members of the family also tested positive. Sarah then felt quite unwell and developed many symptoms along with the ‘classic’ ones (fever, cough, and loss of taste/smell). Her ongoing symptoms include headaches, pain behind her eyes, sore throat, upset stomach, menstrual changes, feeling like the pressure in her head is “wrong,” popping and an “echo” in one ear, extreme fatigue, brain fog, sleep disturbance, low tolerance of movement or sensory stimuli, light-headedness and dizziness, and inability to stand for long periods. Sarah was still experiencing most of these symptoms when she was interviewed, coming up for a year after she first had Covid, and does not feel like she is getting better.

In the early stages of her illness, Sarah would set goals and deadlines for herself, such as when she would be able to work more or walk longer distances again. This led to feelings of disappointment and failure when she couldn’t meet these targets. Sarah wonders if she made her symptoms worse by pushing herself too soon. She kept a record of her ups and downs from early on in her illness and it helped her to understand what a “roller-coaster” her illness was.

Sarah has returned to work one day a week as this is all she can manage alongside her symptoms. She described the way in which any activity now has a knock-on effect for her and how she has to plan every aspect of life very carefully. She has learnt about the importance of ‘pacing’ herself and particularly the positive impact of “aggressive resting” in the form of complete sensory shutdowns after she has done anything that might tire her. This involves lying in a dark room with her eyes closed and earplugs in for at least thirty minutes. She has recently worked out a “model” of trying to think about and rate how much of a social, emotional, cognitive, sensory or physical ‘load’ an activity might place on her and then how much of an “aggressive rest” she will need to recover if she chooses to do it.

She has also tried to do ‘simple’ things to help herself feel better, such as drinking plenty of water, taking supplements, eating as healthily as she can, and finding time to do some breathing exercises. She has found it difficult to follow more complicated diets or other therapies that some people have recommended for Long Covid, especially when she is not 100% sure they will work.

A main priority for Sarah, is managing her symptoms and energy levels so she can put her children’s needs first. She doesn’t want them to miss out on activities because of her illness. She thinks her children struggle to understand why she isn’t getting better in a steadier way, as she has in the past after a stomach bug or flu. They don’t understand why she can have fun doing something with them one day but then has to say no to the same thing the next day. She doesn’t like seeing the disappointment on their faces if she has to say she can’t do something.

Sarah also struggles with the non-linear nature of her illness and not knowing when she might feel better. She finds it particularly difficult that it is the things which make her feel most like her old self, such as meeting a friend for coffee or going for a run, which lead to her feeling worse. She said, “I think that’s the hardest thing, not being able to feel like I can really be myself.” She finds it difficult when people say she is looking well, when she is still feeling quite unwell. Some days now her symptoms feel manageable, but on other days she still feels very restricted in what she is able to do. She has realised that even the smallest of activities, like drying her hair, take energy that she has to take account of. She finds it difficult to realise that she is coming up to a year since she first had Covid and still isn’t better.

So far she has had relatively few health service contacts about her Long Covid symptoms. She was referred to a Long Covid clinic and had an initial 45-minute consultation with them, but then had no follow-up from them. She has found some of the existing Facebook support groups helpful for raising suggestions about what might help or for making her realise that there are other people who are going through similar things. Sometimes people’s suggestions can lead to false hope and sometimes she steps back from the group to stop herself feeling overwhelmed.

For health care professionals, she stressed the importance of listening to how people are feeling and recognising that not everyone with Long Covid will have the same experience.