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Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type
Author(s) -
Sætre Elisabeth,
Eik Hedda
Publication year - 2019
Publication title -
musculoskeletal care
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.628
H-Index - 28
eISSN - 1557-0681
pISSN - 1478-2189
DOI - 10.1002/msc.1407
Subject(s) - joint hypermobility , hypermobility (travel) , ehlers–danlos syndrome , embodied cognition , thematic analysis , qualitative research , interpretative phenomenological analysis , meaning (existential) , psychology , psychology of self , feeling , medicine , psychotherapist , social psychology , physical therapy , psychiatry , sociology , surgery , social science , artificial intelligence , computer science
Purpose 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. Methods 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. Results 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. Conclusions 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.