Judy

Judy has struggled to recover from long Covid for over a year at the time of the interview. She continues to experience symptoms, including post-exertional malaise, headaches and occasional breathlessness. Judy was interviewed in April 2021.

In April 2020 both she and her son experienced relatively mild symptoms of Covid. After self-isolating, their symptoms disappeared but then about a month later they both developed a tiredness and malaise, alongside other symptoms, that just never went away. After reading a newspaper article about long Covid which described some of the same pattern of symptoms, she thought that they were also experiencing long Covid.

Her son has fully recovered, but Judy’s fatigue has continued for well over a year. This limits what she can do, although she has tried to carry on working for some time. She describes feeling frustrated at the apparent randomness of her symptoms which can change daily: ‘the virus does what the virus wants to do.’

She has had some contact with her GP who referred her for some tests and investigations. These have come back as inconclusive, causing her a mixture of relief and frustration.

Judy has experienced difficulties navigating the healthcare system and the advice offered hasn’t always been consistent. She has had regular contact with the occupational therapist at her local long Covid clinic and has found this helpful. She has spoken to her over the phone every month or so. She also found a one-off consultation with a chronic fatigue specialist at a private hospital helpful. This gave her some pointers to the road to recovery: ‘I thought I was managing and when the doctor said that I should go off work, I was just so relieved’.

Judy does not spend much time on social media anyway, but she no longer finds it helpful to look at online support groups for long Covid. This is partly because she feels others may have worse symptoms than her and because she’s not sure it is good for her mental health. Instead, she has focused on finding ways to deal with her fatigue and regain her fitness, although she is finding this difficult to get right: ‘I think I maybe went into pacing too soon without having done the rest first.’

Her advice for others is to rest as much as possible if they get Covid, to give themselves the chance to recover. Her advice for health professionals is to try to offer practical advice about how to recover. She feels more needs to be done for children with long Covid, whose symptoms are often dismissed. She suggests that it would have been helpful to have a focus on numbers with long Covid during the pandemic, as well as on hospitalisations and deaths.