Sirohi, Naina
Living with Lyme Disease Symptoms: Experiences and Adaptive Practices
Lyme disease (LD), caused by Borrelia burgdorferi, presents major diagnostic and treatment challenges due to its diverse symptoms and often ambiguous progression. Despite growing awareness, many patients face misdiagnosis, dismissal, and inadequate care—especially in North America, where brief treatment guidelines may fail to address persistent symptoms. This qualitative study used a phenomenological approach to explore the lived experiences and adaptive strategies of 16 individuals diagnosed with LD for over a year. Semi-structured interviews were analyzed using thematic analysis and Interpretative Phenomenological Analysis (IPA), revealing five key themes: medical journey and testing accuracy, functional and cognitive suffering, mental and emotional impacts, adaptive practices, and advocacy for systemic reform. Participants reported significant disruptions to daily life, reliance on alternative care, and frustration with mainstream medicine. Their narratives underscored institutional shortcomings and highlighted the need for improved education, diagnostic protocols, integrative care access, and patient-centered policies. This study contributes valuable insights into chronic illness care and contested disease recognition.
Author Keywords: Adaptive practices, Lived experiences, Lyme Disease, Mental health, Nursing, Public health