Ellen first experienced symptoms in early September 2021. It felt initially like a head cold and she did a lateral flow test as a precaution and was very surprised when it was positive. She then began to feel much worse and developed flu-like symptoms, fatigue, dizziness and chest tightness. After about two weeks she started to feel slightly better but then developed chest pain. The GP referred her to the hospital. She was admitted for three days and had a series of tests which showed inflammation around her heart. By the time she was discharged she felt she was a ‘completely different person.’ She had no energy and spent her time lying on the sofa, too exhausted to do anything.

Ellen has experienced a range of ongoing symptoms over the months since, including chest pain and chest tightness which made it difficult to breath, extreme mental and physical fatigue, dizziness, difficulty sleeping, feeling the cold, brain fog, and tremors and trembling in her hands. She has gradually come off the medications she was given to treat the pain and inflammation. She is finding her symptoms are now starting to ease to be ‘at least bearable,’ but she still experiences extreme tiredness after physical or mental activity. She has kept a diary of her symptoms to help her try to make sense of her experience and it has helped her see that she has improved. She has been able to build up the amount of walking she can do. She said when her symptoms were at their worst, you can feel like you’re ‘going mad.’

Ellen is trying to negotiate a phased return to work but is finding that current policies and practices don’t seem to meet the needs of people with Long Covid. She’s unsure how she will cope with the demands of the job when she returns, particularly because she can feel better or worse on any given day. The change in her ability to perform her caregiving roles outside work has also been difficult to adapt to, and she sometimes feels guilty that she can’t do all that she used to and hasn’t been able to be ‘there for’ the family members who need her. Having Long Covid has made her rethink her work-life balance and her family roles are something she would like to prioritise more going forward.

Ellen found her usual GP quite supportive but has tended to ‘just get on with things’ and only asked to see the GP at the time she had chest pain. Otherwise, she has managed appointments and prescriptions by phone. When it wasn’t possible to see her usual family doctor, she didn’t feel as supported. Ellen is still on the waiting list for a Long Covid clinic, but she has been able to get support from another organisation which provided links to helpful reading from physiotherapists and other health professionals about how to pace her activities.

Overall, she takes what she can from Facebook, but doesn’t get too involved to avoid the aspects that she finds unhelpful. Being able to relate to other people’s experiences on Facebook has been useful. It has helped her to learn about new developments and she has been able to share these with her HR department and her family.  She thinks it’s useful for her family to read about other people’s experiences of Long Covid, to help them to understand what it is like for her.

Her advice to others is to accept that it will take time to recover and to be kind to yourself and listen to your body. She thinks it is helpful to keep a diary of symptoms. She doesn’t yet see much improvement in people’s understanding of Long Covid. She thinks it’s important for health professionals to listen and have empathy for their patients.