The hidden pandemic: a qualitative study on how middle-aged women make sense of managing their long COVID symptoms.

Background: A relapsing and remitting illness, long COVID can be challenging and debilitating. A person living with long COVID can feel like they are getting better and recovering only to relapse again. The aim of the research was to explore how non-hospitalized middle-aged women who contracted COVID in the first wave of the pandemic, from March 2020, are managing their long COVID symptoms.

Participants And Procedure: A qualitative research study with an interpretative phenomenological analysis approach was used to explore how the women made sense of managing their condition and health seeking behaviours. Participants were recruited from long COVID Facebook groups and semi-structured interviews were conducted remotely by Teams audio; these were digitally recorded and transcribed by hand with prior informed consent. Nine women were interviewed and four themes and eight sub-themes emerged from the data.

Results: The four emerging themes were: inequality and inconsistent medical treatment; uncertainty and ambiguity of managing long COVID symptoms; managing other people's expectations and perceptions of long COVID; and the changing identity. Overall, these results indicated a general mistrust in health care services to provide adequate support and individualized treatment plans leading women to self-advocacy and to seek alternative support and treatment.

Conclusions: This study raised questions about the possible unfair treatment of women seeking medical attention for their long COVID symptoms; how ambiguous symptoms are misattributed to anxiety and discrimination from health care professionals contributes towards stigma. The study concludes with recommendations for service improvement such as the compassionate validation of patients' pain and the use of evidence-based therapeutic practices such as mindfulness.