Personal Agency and Community Resilience: Narratives of Women Navigating Health Care With Chronic Lyme Disease

Abstract

Chronic Lyme disease can manifest as a debilitating illness with symptoms that change over time. With its varied presentation, timeline variation, diagnostic difficulty, and lack of definitive treatment, clinical recognition of chronic Lyme disease remains controversial. At the same time, patients face challenges in finding a provider who is supportive and knowledgeable about diagnosing and treating Lyme. We examined the ways the medical system may have affected the lived experiences of chronic Lyme patients. In this article, we communicate the personal, health care, and community illness experiences of 14 women navigating the medical system with chronic Lyme disease through a qualitative community-based participatory research study using interviews and narrative reflection in a rural community setting. The women were interviewed by a researcher living with chronic Lyme disease and the transcripts were analyzed for themes. All participants described navigating multiple allopathic and nonallopathic care modalities to find satisfactory care. They struggled with physical and emotional burdens of chronic, nonlinear illness, as well as disbelief and discrimination by medical providers. Their lives followed patterns of illness and wellness, trust and mistrust of medical treatment, and community connection and disengagement. They learned to become their own advocates to seek affirmative care. They are aware of the controversial nature of their illness, and many have channeled their frustrations into caring for one another through their Lyme community. Women living with controversial diagnoses like chronic Lyme disease experience increased challenges navigating the medical system to find satisfactory care and thus create communities with each other for mutual aid and support. In understanding these challenges, the medical community can improve care for people living with contested chronic illnesses.

Knowing the entire story – a focus group study on patient experiences with chronic Lyme-associated symptoms (chronic Lyme disease)

“…Many participants reported negative experiences with healthcare providers and divergent experiences with people in their social environment, in line with previously reported findings on CLD [ 7 , 8 , 10 , 15 , 25 ]. Various themes could be identified in participants’ negative experiences with healthcare provides.…”

“…These difficulties are clearly felt by patients as well, who may experience lack of empathy and understanding in their doctor [ 19 ]. This is specifically true for CLD [ 7 , 8 ], and may lead to CLD patients’ sense of neglect by the conventional healthcare system [ 15 , 21 – 25 ].…”