Callum caught Covid at the start of the pandemic in March 2020 and has moved back to his family home. Although he is still very much affected more than two years on, he has gradually found ways to deal with his condition and find meaning in his life as it is now. Callum was interviewed in May 2022.

Before catching Covid, Callum worked full time as a mechanical engineer. He was busy and liked to ‘pack a lot’ into life. He was a keen runner and had other hobbies and a full social life. Callum caught Covid in March 2020. The first week of his illness was ‘pretty grim;’ he felt exhausted, with nausea, a fever, and severe breathlessness symptoms. He spent the week in bed on his own at home, resting as much as he could, and felt very concerned. He started to feel better and go out again after about 10 days. However, after a very short walk, he started to have severe muscle aches, weakness, headache, and brain fog. He just felt terrible. He stayed on his own ‘in survival mode’ for about 5 weeks. Even a shower or sitting up for 20 minutes would leave him feeling unwell. He developed tachycardia, palpitations, gastrointestinal issues (like stabbing pain, diarrhoea, and constipation), and a disrupted attention span. The investigations that he has had have all failed to find ‘anything wrong’ which has been difficult.

After the ‘huge shift’ in his life caused by Covid, Callum felt so unwell he started to withdraw from his relationships and felt depressed and desperate. He decided with his parents that it would be best to move back home with them until he felt better. He is still living with them over two years later. He felt some grief at about losing his independence and had a sense that he was just surviving. At that time there was no wider understanding that Long Covid existed. Writing a blog about his experience quite early on, helped to raise awareness of the condition. Since then, he has done over a hundred media appearances on Long Covid. Although tiring, raising awareness through this media work has made his experiences more meaningful and has given him a sense that his life has value and purpose.

After a few months off work, Callum tried a gradual return to work and did his very best to increase the hours he could do. After a relapse of his Long Covid symptoms in December, his company indicated that they couldn’t do any more to keep him in work and he was made redundant. It was a shock to be made unemployed and very upsetting, as work was a big part of his identity. The loss of his job made his illness seem more permanent. He was unemployed for around year. He found applying for disability benefits very arduous, and a horrible and dehumanising experience. It has felt like a ‘tick-box’ exercise or a ‘lie-detector test’ instead of a process of trying to understand the extent of needs to cope with his disability. His family have been very supportive. They have helped him emotionally and with practical things, like providing food and doing laundry, and with navigating the healthcare system.

Callum feels lucky in many ways in comparison with some other people and has gradually accepted that he needs to adapt his lifestyle on a long-term basis. This has reduced his feelings of being overwhelmed or hopeless and has allowed him to focus on optimising his quality of life in the present and no longer feeling that his life is only about Long Covid. Callum now works part-time in a very flexible job where his symptoms are accommodated. He is very worried about catching Covid again and is trying to find a balance between precautions and living his life. Looking back over the last couple of years, Callum feels that the process of recovery feels more linear, whereas month by month it felt more up and down at the time.

Callum has not had a lot of contact with the medical profession over the period of his illness. Initially he went to his GP who said he didn’t know what was going on but would treat him ‘like a 15-year-old with glandular fever.’ His GP advised him about pacing, which has taken him time to fully understand how to apply with the help of a physiotherapist he has seen. The GP also gave him access to pulmonary rehabilitation resources online. He also went to A&E. He has had medical tests that haven’t found anything and is waiting for some more now that there is more knowledge about Long Covid. The lack of knowledge and curiosity about the illness and how to treat it initially meant his care wasn’t great, and he is aware people in other parts of the country have had much better Long Covid support. He feels he’s had to advocate for access to any investigations. Recently he has found a GP who is very open and keen to find out more which is ‘the best you can ask for.’

Through his media appearances, he was contacted by an organisation that supports adults with disabilities and was offered resources and support to help learn to manage his symptoms. The self-management strategies he has learnt have been the main thing that have helped him, but he only managed this with support from others too. Callum feels this should be the minimum available to others. He thinks it’s important for people experiencing Long Covid to have access to healthcare professionals who listen and care, will guide them, and who have experience working with people with similar conditions. For Callum, it is important to accept the condition and still find meaning and quality in life, and to advocate for yourself if you feel things are not being investigated seriously. He would like to see a cultural shift to practitioners being more proactive in looking for successful treatments and the mechanisms behind Long Covid. Callum would also like more research into societal impacts of Long Covid, for example on employment rates, and other long term social impacts.

Callum says that it’s worth getting things checked with health professionals if something doesn’t feel right.

Age at interview 30

Callum had to move back home with his parents so they could care for him.

Age at interview 30

Callum is focused on improving his quality of life rather than pinning his hopes on a complete recovery.

Age at interview 30