title: Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease.
abstract: Persistent, subjective symptoms of unknown etiology following treatment for Lyme disease have been termed post- treatment Lyme disease syndrome or chronic Lyme disease (PTLDS/CLD). 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 "new normal" 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.
authors.affiliation: 1 Lyme Disease Research Foundation, Lutherville, Maryland, USA.|2 Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
authors.forename: Alison W
authors.initials: AW
authors.lastname: Rebman
authors.affiliation: 2 Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
authors.forename: John N
authors.initials: JN
authors.lastname: Aucott
authors.affiliation: 1 Lyme Disease Research Foundation, Lutherville, Maryland, USA.|2 Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
authors.forename: Eric R
authors.initials: ER
authors.lastname: Weinstein
authors.affiliation: 2 Johns Hopkins University School of Medicine, Baltimore, Maryland, USA.
authors.forename: Kathleen T
authors.initials: KT
authors.lastname: Bechtold
authors.affiliation: 3 Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
authors.forename: Katherine C
authors.initials: KC
authors.lastname: Smith
authors.affiliation: 3 Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.|4 Cornell University, Ithaca, New York, USA.
authors.forename: Lori
authors.initials: L
authors.lastname: Leonard
mesh_terms: D002908:Chronic Disease; D005260:Female; D006304:Health Status; D006801:Humans; D007398:Interpersonal Relations; D008193:Lyme Disease / Q000523:psychology*; D008297:Male; D008603:Mental Health; D008875:Middle Aged; D033262:Narration; D012944:Social Support
keywords: United States, Mid-Atlantic; illness and disease, chronic; illness and disease, experiences; illness and disease, infectious; illness and disease, social construction; interviews, semistructured; qualitative; qualitative analysis