TY - JOUR
T1 - Personal Agency and Community Resilience
T2 - Narratives of Women Navigating Health Care With Chronic Lyme Disease
AU - Morrison, Tessalyn
AU - Madaras, Sylvia
AU - Larson, Charlotte
AU - Harrison, Rebecca
N1 - Funding Information:
The authors would like to thank Dr. Christina Nicolaidis, MD, for her feedback on the manuscript and acknowledge the participants of this study for offering their time to share their experience of living with Lyme and for giving their feedback on the manuscript. This research is made possible by the grassroots communities of mothers, neighbors, farmers, care providers and advocates who continue to work on behalf of Lyme patients everywhere. The authors received no financial support for the research, authorship, and/or publication of this article.
Publisher Copyright:
© The Author(s) 2021.
PY - 2021/12
Y1 - 2021/12
N2 - 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.
AB - 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.
KW - Lyme disease
KW - Northeast United States
KW - chronic Lyme disease
KW - community based participatory research
KW - narrative medicine
KW - posttreatment Lyme disease syndrome
KW - qualitative
KW - women
UR - http://www.scopus.com/inward/record.url?scp=85119447741&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85119447741&partnerID=8YFLogxK
U2 - 10.1177/10497323211044463
DO - 10.1177/10497323211044463
M3 - Article
C2 - 34772306
AN - SCOPUS:85119447741
SN - 1049-7323
VL - 31
SP - 2706
EP - 2714
JO - Qualitative Health Research
JF - Qualitative Health Research
IS - 14
ER -