Living in Limbo: Contested Narratives of Patients with Chronic Symptoms Following Lyme Disease

Alison W. Rebman, John N. Aucott, Eric R. Weinstein, Kathleen T. Bechtold, Katherine C. Smith, Lori Leonard

Research output: Contribution to journalArticlepeer-review

15 Scopus citations


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.

Original languageEnglish (US)
Pages (from-to)534-546
Number of pages13
JournalQualitative Health Research
Issue number4
StatePublished - Mar 1 2017


  • 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

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health


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