When Xanthe had Covid in early 2021, it felt like very bad flu. For the first three months after her Covid infection, Xanthe had fatigue, burning pain in her legs, persistent headache, dizziness, weight loss, and brain fog. She had a few months in the summer where she felt much better and applied for a new job which she began in October, but her post-exertional malaise worsened and she was spending the whole weekend in bed. By January she reduced her hours to one day a week but thinks she might need to consider remote working. She now needs support from her family for day-to-day living and uses an electric car to get around. She has been attending the Long Covid clinic which has been very positive, but she wishes it had more joined up, holistic care and saw people more frequently. Xanthe was interviewed in May 2022. Since then, she tells us she has had to completely resign from work.

Xanthe tested positive for Covid in late December 2020. For ten days she felt like she had very bad flu which she was able to treat at home. Other members of her family also had Covid and recovered. After ten days, Xanthe decided to go for her usual walk in the woods which normally takes about an hour. About half an hour into her walk she suddenly felt “like I’d been hit by a bus.” She managed to get home and into bed.

In the months that followed, Xanthe had severe fatigue, muscle pain, and burning pain in her legs which she describes like “fire going up my legs.” She also had persistent headache, dizziness, continued weight loss, and brain fog. The fatigue led to her delay finishing her Master’s degree for several months. Between June and July her symptoms plateaued where she wasn’t getting any worse or any better. She feels the adrenaline of finishing her Master’s helped her along, although she still had the burning feeling in her legs.

At five months post-Covid, Xanthe developed joint pain and her wrists and ankles started to feel inflamed. She went on holiday to a Cyprus and said she “felt completely fine” apart from the occasional burning feeling in her legs. By October she was working four and a half days a week in a new job as a psychological therapist for children and young people. But at the weekends she was “crashing badly,” and she needed to spend the entire weekend in bed.

Around December, Xanthe had the third booster vaccine which coincided with a “huge decline” in her health. In January she reduced her work to one day a week as the fatigue, post-exertional malaise, and brain fog were becoming much worse. Xanthe says as time went on, “the crashes become horrendously traumatic because you go from sort of functioning, to not functioning.” She needed to ask her family for help with day-to-day living, like cooking, laundry, and hair washing. She now does a lot of the things she needs to do online, like banking and shopping.

In April she spent a month doing hyperbaric oxygen therapy as a daily outpatient which cost £4,000. She no longer has the burning pain in her legs and the muscle pain has been reduced, but the post-exertional fatigue remains and she feels disheartened “that [it] promised so much and delivered very little, and spent so much money on it.”

Xanthe has been attending the Long Covid clinic and seeing the GP, psychotherapist, and nutritionist occasionally. Her experience of the Long Covid clinic has been very positive; clinicians believe her and she has been offered lung function and 24-hour monitor heart tests. She would like to see Long Covid clinics provide a holistic approach to care provided by a multidisciplinary team.

She is waiting to see a physiotherapist and has been doing a brain training programme which focuses on understanding the relationship between the brain and the nervous system and helping it to rebalance which she thinks is helping.

Mentally, Xanthe says, “it is horrendous, living like this is absolutely horrendous.” She has had weeks recently where she cried every day. She is terrified of getting Covid again. She says, “I just have to take every minute at a time sometimes.” She tries to focus on happy memories, like the time before Covid when her whole family of six went on holiday to Canada together which she thinks about “when I’m feeling really terrible.” She’s also been seeing a private therapist because it’s really important for her to stay well mentally.

Socially, she can only manage to see people for two hours a week or less and afterwards she crashes. She has started a relationship with another person with Long Covid; they meet up at each other’s homes but on one occasion they were able to go to a classical concert together.

She thinks there is limited understanding of Long Covid amongst people. When people see her she looks well so they assume she’s recovered and they find it difficult to understand how she can be doing something one week and then not the next. She feels the attitude of “push through, be positive, be strong, you’ll get through it’ is “really harmful for someone with Long Covid” because she has pushed through for a whole year and made herself worse.

Before having Covid, Xanthe was very fit and active doing several sports including thirty- to sixty-mile cycle rides with her cycling club each weekend. She was finishing her Master’s degree in psychotherapy and planning on moving out from living with her parents when she got a job. She feels stuck right now and “sometimes completely terrified” of the future but being in her mid-twenties she tries to think “I can’t possibly be like this forever.”

Xanthe was sometimes “completely terrified” when she thought about the future. She talked about how Long Covid affected young and older people in different ways.

Age at interview 26

Xanthe applied for PIP to help fund her care when her sick pay runs out.

Age at interview 26

Xanthe’s just got into a relationship with another person with Long Covid. She says she feels she has “nothing to give and yet someone loves me for who I am

Age at interview 26

Xanthe remembers going on holiday and feeling like she didn’t have Long Covid anymore.

Age at interview 26

Xanthe is no longer able to move out of her parents’ house as she now relies on their care.

Age at interview 26

Xanthe said she felt like someone had lit a fire in her feet that was travelling up her legs.

Age at interview 26