Flexible bodies-Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type.

Abstract

The aim of this study was to explore embodiment as a meaning-making experience in the daily life of Norwegian adults living with joint hypermobility syndrome/Ehlers-Danlos syndrome, hypermobility type (JHS/EDS-HT). The work of Drew Leder and his distinction between bodily dis- and dys-appearance contributes to the description and analysis of individuals' bodily experiences of living with this chronic illness. An explorative and qualitative design was applied to in-depth interviews with seven participants. The theoretical framework was phenomenological, and the method of analysis was thematic, involving descriptive and interpretative approaches. Participants' bodily experiences were closely connected to a timeline viewing their illness in the past, the present and from future perspectives. The following central themes emerged from the data: (a) visible to invisible signs of a former body; (b) standing up and falling down of a present body; and (b) future thoughts of an inner and outer body. The study found that living with JHS/EDS-HT revealed complex experiences of having flexible bodies and restricted lives. Our findings also showed a meaning-making process of embodied experiences that evolved over time, as well as a sliding transition from social to personal dys-appearance. In the course of time, a bodily disruptions in social interactions comes to the fore, with invisible symptoms such as pain and fatigue. Individual bodily suffering determines the existence of hope or hopelessness regarding recovery from this condition.