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

Abstract

BackgroundA 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 manag-ing their long COVID symptoms.Participants and procedureA qualitative research study with an interpretative phenomenological analysis approach was used to explore how the wom-en 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.ResultsThe 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.ConclusionsThis 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 con-tributes 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.