Samenvatting

Purpose: The aim of this study was to explore the functioning of people with lipoedema from their perspective. Methods: This was a qualitative study following a phenomenological perspective using individual in-depth interviews with a convenience sample of 13 Dutch people with lipoedema. The data were analysed by using an interpretative phenomenological approach. Results: Two overarching group experiential themes (GETs) were identified: (1) “physical complaints are only a part of their problems”, and (2) “longing for improved appearance and functioning”. The GETs were composed of the following subordinate GETs: “disproportionate functioning of the lower body”, “navigating daily life with lipoedema”, “coping with uncertainty”, “the toll of shame and stigmatization”, “consequences of a very negative self-image”, “desire for change and improved appearance and functioning”, and “an ongoing journey of acceptance”. Conclusions: Participants experience that physical complaints affect daily activities, but with adequate adaptability, participation issues are relatively limited. Instead, shame about their appearance and (fear of) stigmatization mainly leads to social avoidance. Additionally, participants long for freedom to do what they want, wear what they want, and desire a different appearance. Therefore, the experienced level of acceptance of the condition is context- and situation-dependent and not straightforward, which is complicated by the burden of knowing that the condition is chronic.