A qualitative study exploring the experiences of individuals living with lipoedema and the impacts it has on their quality of life

PURPOSE: Individuals with lipoedema may experience negative impacts that are not often identified through current quality-of-life measures. The aim of this study was to explore the experiences of individuals living with pre-existing lipoedema and their perceptions of how these experiences influence quality of life. METHODS: Participants with a prior diagnosis of lipoedema participated in a single semi-structured interview or focus group. These interviews/focus groups were transcribed verbatim, allowing for an inductive thematic analysis to be conducted. RESULTS: Sixteen participants were included and four main themes were identified. These included: the ongoing work of living with lipoedema, living with a restrictive and overwhelming condition, caught between self-acceptance and social judgement, and forced to navigate lipoedema alone. Across the four themes, 21 sub-themes emerged to convey the quality-of-life concerns experienced by individuals with lipoedema. CONCLUSIONS: Individuals living with lipoedema experience impacts on their quality-of-life across physical, psychological, and social aspects of life. This study highlights how the ongoing burden of physical symptoms, social perceptions, and healthcare-related challenges contributes to reduced quality-of-life for individuals living with lipoedema. Increased knowledge and awareness amongst healthcare providers is needed to improve care received by individuals living with this condition.