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The objective of this study was to give primacy to the patient experience of this medically contested condition by eliciting patient illness narratives and identifying emergent issues through semistructured interviews conducted among 29 participants. We used thematic narrative analysis to identify three predominant themes: (a) Physical and social limitations lead to a \u201cnew normal\u201d characterized by fundamental shifts of ways of being in the world, (b) disease-specific factors contribute to symptom and illness invisibility that affects social support in nuanced ways, and (c) pervasive medical uncertainty regarding PTLDS\/CLD promotes an increased sense of personal responsibility for care. Similar to other contested or medically unexplained syndromes, our findings suggest that the social sequelae of PTLDS\/CLD can be equally protracted as the physical effects of this illness.<\/jats:p>","DOI":"10.1177\/1049732315619380","type":"journal-article","created":{"date-parts":[[2015,12,2]],"date-time":"2015-12-02T20:37:16Z","timestamp":1449088636000},"page":"534-546","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":42,"title":["Living in Limbo"],"prefix":"10.1177","volume":"27","author":[{"given":"Alison W.","family":"Rebman","sequence":"first","affiliation":[{"name":"Lyme Disease Research Foundation, Lutherville, Maryland, USA"},{"name":"Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John N.","family":"Aucott","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric R.","family":"Weinstein","sequence":"additional","affiliation":[{"name":"Lyme Disease Research Foundation, Lutherville, Maryland, USA"},{"name":"Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kathleen T.","family":"Bechtold","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Katherine C.","family":"Smith","sequence":"additional","affiliation":[{"name":"Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lori","family":"Leonard","sequence":"additional","affiliation":[{"name":"Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA"},{"name":"Cornell University, Ithaca, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2016,7,10]]},"reference":[{"key":"bibr1-1049732315619380","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaut.2006.09.004"},{"key":"bibr2-1049732315619380","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.ep10934391"},{"key":"bibr3-1049732315619380","doi-asserted-by":"publisher","DOI":"10.1186\/1471-2296-15-79"},{"key":"bibr4-1049732315619380","doi-asserted-by":"publisher","DOI":"10.1177\/1049732302238747"},{"key":"bibr5-1049732315619380","doi-asserted-by":"publisher","DOI":"10.4135\/9781526402271"},{"key":"bibr6-1049732315619380","doi-asserted-by":"publisher","DOI":"10.2307\/3350122"},{"key":"bibr7-1049732315619380","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-012-0126-6"},{"key":"bibr8-1049732315619380","first-page":"79","volume":"123","author":"Auwaerter P. 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