{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,26]],"date-time":"2026-09-26T21:09:43Z","timestamp":1790456983997,"version":"4.1.0"},"reference-count":35,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2019,7,26]],"date-time":"2019-07-26T00:00:00Z","timestamp":1564099200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Musculoskeletal Care"],"published-print":{"date-parts":[[2019,9]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Purpose<\/jats:title><jats:p>The aim of this study was to explore embodiment as a meaning\u2010making experience in the daily life of Norwegian adults living with joint hypermobility syndrome\/Ehlers\u2010Danlos syndrome, hypermobility type (JHS\/EDS\u2010HT). The work of Drew Leder and his distinction between bodily dis\u2010 and dys\u2010appearance contributes to the description and analysis of individuals' bodily experiences of living with this chronic illness.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>An explorative and qualitative design was applied to in\u2010depth interviews with seven participants. The theoretical framework was phenomenological, and the method of analysis was thematic, involving descriptive and interpretative approaches.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The study found that living with JHS\/EDS\u2010HT revealed complex experiences of having flexible bodies and restricted lives. Our findings also showed a meaning\u2010making process of embodied experiences that evolved over time, as well as a sliding transition from social to personal dys\u2010appearance. 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.<\/jats:p><\/jats:sec>","DOI":"10.1002\/msc.1407","type":"journal-article","created":{"date-parts":[[2019,7,26]],"date-time":"2019-07-26T08:18:46Z","timestamp":1564129126000},"page":"241-248","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Flexible bodies\u2014Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome\/Ehlers\u2010Danlos syndrome, hypermobility type"],"prefix":"10.1002","volume":"17","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2685-1474","authenticated-orcid":false,"given":"Elisabeth","family":"S\u00e6tre","sequence":"first","affiliation":[{"name":"Faculty of Medicine, Institute of Health and Society University of Oslo, Oslo, Norway &amp; Sunnaas Rehabilitation Hospital  Nesodden Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Hedda","family":"Eik","sequence":"additional","affiliation":[{"name":"OsloMet  Oslo Norway"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2019,7,26]]},"reference":[{"key":"e_1_2_8_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10067-014-2610-6"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/(SICI)1096-8628(19980428)77:1<31::AID-AJMG8>3.0.CO;2-O"},{"key":"e_1_2_8_4_1","first-page":"1","article-title":"The lived experience of joint hypermobility and Ehlers\u2010Danlos Syndromes: A systematic review and thematic synthesis","author":"Bennett S.","year":"2019","journal-title":"Physical Therapy Review"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.3109\/09638280903178407"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0020-7489(99)00067-X"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12891-015-0549-7"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1191\/1478088706qp063oa"},{"key":"e_1_2_8_9_1","doi-asserted-by":"publisher","DOI":"10.1155\/2013\/580460"},{"key":"e_1_2_8_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ridd.2016.11.017"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2013.03.003"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/B978-0-7020-3005-5.00002-1"},{"issue":"7","key":"e_1_2_8_13_1","first-page":"1777","article-title":"The revised (Brighton 1998) criteria for the diagnosis of benign joint hypermobility syndrome (BJHS)","volume":"27","author":"Grahame R.","year":"2000","journal-title":"Journal of Rheumatology"},{"key":"e_1_2_8_14_1","doi-asserted-by":"publisher","DOI":"10.1080\/09593985.2016.1247933"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31542"},{"key":"e_1_2_8_16_1","first-page":"43","volume-title":"Forskningsintervjuer, filosofiske dialoger og terapeutiske samtaler","author":"Kvale S.","year":"2009"},{"key":"e_1_2_8_17_1","volume-title":"The absent body","author":"Leder D.","year":"1990"},{"key":"e_1_2_8_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.c.31552"},{"key":"e_1_2_8_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315617444"},{"key":"e_1_2_8_20_1","first-page":"98","volume-title":"The spatiality of One's own body and motility","author":"Merleau\u2010Ponty M.","year":"1974"},{"key":"e_1_2_8_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.36293"},{"key":"e_1_2_8_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.physio.2013.09.002"},{"key":"e_1_2_8_23_1","first-page":"337","volume-title":"Developing a sampling plan","author":"Polit D. 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