In April 2020, Frances experienced bad flu-like symptoms and a blinding headache. She has found it frustrating that she didn’t manage to get this confirmed as Covid, although tests excluded other things. After 5-6 days in bed and a week feeling exhausted, she felt better. A month later her symptoms returned. She was sleeping 18-20 hours a day, experienced brain fog, had a severe headache and felt really low. She had no enthusiasm or energy for anything. For months she might feel better for a couple of days and then the symptoms returned, which affected her mood. Her menopause symptoms returned for a while.

Because she was working for the NHS, she was working more than she had expected to at that point in her life. In early 2021 things started to go downhill again. She had brain fog, very low energy and low mood. She stopped working and felt supported by her colleagues in this decision. Even though Frances caught Covid again in January 2022, she felt better again after about 6 weeks. After two years, she now feels she has completely recovered.

Before she got Covid, Frances was active and played sport. She found the fatigue of Covid was completely different to normal tiredness. Even walking to the end of the drive or on an incline was exhausting and she couldn’t take a deep breath. A friend gave her some advice about managing her energy use. She started planning what she needed to do that day, prioritising what was important and asking others to do things she didn’t need to – “plan, prioritise and delegate”. She encouraged herself do this by thinking about how many ‘beanbags’ of energy she had each day. Daily tasks, like taking a shower, could feel like they used many more ‘bags’ of energy on some days than on other days. Recognising this helped her to understand how much or how little to push herself that day. She was anxious about pushing herself too hard in case it made her symptoms worse and she struggled with her very low mood. She has been well supported by her husband and friends who are health professionals.

Frances initially felt like ‘a bit of a fraud’ because she hadn’t had a positive Covid test and hadn’t been ‘seriously’ unwell with Covid to begin with. She worried about using the NHS. She didn’t want to be a ‘burden’ whilst she knew the NHS was overwhelmed. When asking for help for her mood, she felt the GP was insensitive and didn’t really know what to do and was just reading off a mental health checklist. She felt that he didn’t take things seriously because she hadn’t been as unwell as some people with Covid. She was offered anti-depressants, which she didn’t think was the right thing for her. She left the appointment feeling that she had had no help.

When Long Covid became more recognised, ‘a thing’, Frances felt reassured that she wasn’t alone in her experience. She clearly remembers the first time she heard someone talking about Long Covid on the radio. Frances feels that healthcare professionals’ knowledge and understanding about Long Covid is improving but is still limited, especially the impact of the overwhelming fatigue.

She thinks that the general public haven’t recognised how long people’s Long Covid symptoms can last and how debilitating they can be. She is grateful that she had access to support and knowledge through her professional network and friends with medical knowledge and experience. They helped her to get information which others might not have had access to. She would advise others to be kind to themselves and not to be too impatient. She suggested they should try not to compare themselves to others, to listen to their body and manage their energy, to accept the highs and lows, and to find a support network.

Her message to health professionals is that they should listen to and recognise people’s symptoms, including low mood, be reassuring and offer hope that things will get better and point people to resources or services that could help.