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

Introduction

Lyme disease is the most common vector-borne disease in North America and Europe with a threefold increase in prevalence from 1993 to 2013 (Delong et al., 2019). Lyme is caused principally by Borrelia burgdorferi, a spirochete, injected by Ixodes scapularis and Ixodes pacificus ticks in the United States when the tick is in its nymph stage (Cardenas-de la Garza et al., 2019). The disease is described as having three clinical stages, presenting in the first weeks as a rash; in the first month as a rash with neurologic symptoms, arthritis, and carditis; and in later months as continued arthritis or carditis with a different set of neurologic issues (Borchers et al., 2015; Hu, 2016). Symptoms of persistent Lyme disease overlap with other illnesses but are generally more severe and include fatigue, arthritis, pain of the limbs or neck, cognitive dysfunction, sleep disruption, paresthesias, headaches, irritability, dizziness, chills, and depression (Rebman & Aucott, 2020). Recent theories for why people develop chronic symptoms of Lyme disease include the presence of resistant forms of Borrelia, the oversensitization of neural networks, the dysregulation of autoimmune function, and factors relating to the illness experience (diagnosis and treatment delays, stress, etc.; Lacout et al., 2018; Rebman & Aucott, 2020). In the early phases of the disease, Lyme is diagnosed with immunological analysis using IgM and IgG markers, which remain positive for a few months (Hu, 2016). For later stages of Lyme disease, there is no consensus on the symptoms, laboratory, or imaging findings, so it is often a diagnosis of exclusion (Rebman & Aucott, 2020). Co-infections with Anaplasma phagocytophilum or Babesia microti are estimated to occur in 2% to 15% of Lyme disease cases, which can complicate the diagnostic process (Hu, 2016).

There are many names for the chronic form of Lyme disease, including chronic Lyme disease (CLD; Borchers et al., 2015), posttreatment Lyme disease syndrome (Hu, 2016), post-Lyme disease syndrome (Glauser, 2019), or post-Lyme late disease (Feder et al., 2007; Gentilini & Bricaire, 2019). We prefer to use the general term of CLD because patients with persistent symptoms of Lyme disease are a heterogenous population. People with CLD do not always receive initial treatment and are therefore not always “post-treatment” (Feder et al., 2007; Rebman & Aucott, 2020). Also, people with CLD do not always reach a point where they are asymptomatic where they would consider themselves being “post-Lyme.” We also refer to CLD throughout our results simply as “Lyme,” as that is the term our participants used most often to describe their experience.

CLD is a contested illness due to the confident polarity in clinical guidelines from the Infectious Disease Society Association and the International Lyme and Associated Diseases Society which represent the two extremes of clinical perspectives on CLD. The Infectious Disease Society Association does not endorse the existence of CLD, instead recommending initial antibiotic prophylaxis for verified Lyme followed by a 2- to 4-week antibiotic regimen, which can be repeated if “post-treatment” symptoms continue (Hu, 2016; Wormser et al., 2006). The International Lyme and Associated Diseases Society does endorse the existence of CLD and allows for longer periods of antibiotic treatment as needed (Cameron et al., 2014). Providers who treat Lyme disease tend to align themselves with one of these organizations, intentionally or unintentionally and unbeknownst to most patients.

In addition to suffering a confusing array of symptoms, which can include pain to the level of postsurgical pain and fatigue that is comparable with multiple sclerosis (Fallon et al., 2008), Lyme patients experience a double burden of having their illness experience judged and doubted (Dumes, 2020). The medical literature is laden with public statements from medical providers who support (Greenberg, 2017; Halperin, 2015; Hirsch et al., 2018; van Hout, 2018) and condemn CLD (Auwaerter et al., 2011; Gentilini & Bricaire, 2019; Melenotte et al., 2019). The latter have described CLD as a “scam,” “a result of psychological trauma,” an “asymptomatic disease,” and simply “a reflection of the perception of one’s own multiple difficulties” (Gentilini & Bricaire, 2019; Melenotte et al., 2019). CLD patients have been called “anti-science activists” and Lyme doctors are described as “pseudo-specialists” (Auwaerter et al., 2011; Gentilini & Bricaire, 2019).

We know from existing medical literature chronicling the experiences of CLD patients that the experience of seeking medical care is exhausting, confusing, and often results in a departure from conventional medicine to alternative care. Patients generally experience a wide variety of symptoms, see multiple specialists, undergo many diagnostic tests, incur high expenses, and receive multiple diagnoses (Ali et al., 2014; Gaudet et al., 2019). They deal with stress from high expenses for treatment that is not always covered by insurance, especially for alternative medical care (Ali et al., 2014; Drew & Hewitt, 2006). The dismissal and discrimination they receive from physicians leads to the distrust of conventional health care systems (Ali et al., 2014; Dumes, 2020; Gaudet et al., 2019). Through their dismissal by providers, they learn to advocate for themselves as individuals and collectively (Drew & Hewitt, 2006). Researchers have described the “push” (e.g., stigma) and “pull” (e.g., effectiveness) forces that CLD patients experience as they navigate modern medical services and seek alternative care (Ali et al., 2014; Boudreau et al., 2018). The anthropological studies of CLD patients and providers have suggested that one reason why people feel pushed away from biomedicine is that it focuses on physical pathophysiologic signs over a patient’s symptoms, whereas alternative and integrative medicine have a greater focus on symptoms (Dumes, 2020). Other researchers add that physicians are trained to recognize heuristics, so when they see a patient with a contested illness, the heuristic they recognize is that the patient has multiple medically unexplained symptoms (Wessely & White, 2004). Providers feel that symptoms are less important than the pattern, whereas the patient feels that the experience of their symptoms is key to the diagnosis (Wessely & White, 2004). In addition, the physician’s acknowledgment of what the patient is experiencing involves noticing it as something “medically relevant” and not just “legitimate” (Barker, 2008). These studies have illuminated the experiences of CLD patients to highlight the need for compassionate medical care.

The purpose of this qualitative study is to communicate the experiences of women navigating the medical system with CLD. We use Arthur Kleinman’s Explanatory Model to describe the personal, professional, and folk sector experiences of women living with CLD (Kleinman, 1978). While there are examples of research describing the experiences of patients with CLD, this is the first study to describe the experiences of women living in rural areas. Women living in rural areas have fewer options for health care providers and rely more on one another for support in managing their disease. We chose to center women’s chronic illness experience not only to control for gender but also to give voice to women who suffer gender bias in treating their chronic pain (Driscoll et al., 2018; Samulowitz et al., 2018). CLD shares symptomatology and language around pain with other contested illnesses more common in females such as fibromyalgia and historically discredited psychosomatic diseases, seen as malingering, or described as hysteria and neurasthenia (Armentor, 2017; Råheim & Håland, 2006). Women living with CLD face gender bias in addition to discreditation of their chronic pain. Understanding their health care–seeking behaviors is important for understanding how health care providers can improve their patient experience.

Method

This qualitative community-based participatory research involved semi-structured interviews and narrative reflections of 14 women with CLD living in rural settings in the United States. Participants self-identified as women over the age of 18, living with CLD as diagnosed by a provider. We received Institutional Review Board approval from Oregon Health & Science University (STUDY00019754) prior to the beginning of the study. Each participant received written information about the project and provided verbal consent. We invited participants through chain referral. A researcher with CLD reached out to an initial group to solicit participation. The initial group then referred their close contacts to this researcher, who solicited their participation. We chose this approach because many CLD patients participate in independent, patient-established care networks and social circles, and we wanted to adapt our research to a model already built by the participants themselves. Once the researcher contacted the participant, she completed a semi-structured interview or a written narrative, or both, based on participant preference (Supplemental Material, Semi-Structured Interview Guide). We offered multiple formats for reflection for the purpose of inclusivity and to build trust with the participants. Factors affecting participants’ choice in format included disability, access to technology, time constraint, location, and comfort. Interviews lasted on average 1 hour, and written reflections ranged from one to 10 pages. In interviews, participants were asked to respond to questions about their symptomatic experience, diagnosis, seeking of treatment, and effects on personal life. Written reflections were open format and interviews were semi-structured, beginning with the prompt “Tell me about your experience with Lyme.”

We used Arthur Kleinman’s Explanatory Model (Kleinman, 1978) as the conceptual model for our research and our approach to the illness experience. The aim of our research was to understand the illness experience from the participants themselves, so we used grounded theory as a framework for our thematic data analysis. Grounded theory draws themes directly from qualitative data to build a theory in an area of study often underrepresented in research (Glaser & Strauss, 1967; Strauss & Corbin, 1997). In this study, researchers individually read the interview transcripts and narrative reflections from participants, and independently coded them for recurring themes. The research team then met to compare independent thematic analyses and draw out common themes. We then used these themes to review the data a second time. This analysis used intercoder reliability as a validity procedure to avoid researcher bias and maintain the inductive nature of the research (McHugh, 2012). The researchers then organized these themes into three overarching categories of patient experience: personal illness experience, health care experience, and community experience. The team summarized the results of this analysis and chose illustrative quotes. As a final validity procedure, participants reviewed the results and their feedback was incorporated into the final manuscript (Creswell & Miller, 2000).

Community-based participatory research applies to research that seeks to ensure an equitable partnership between community members affected by the issues being studied and academic researchers, where community members participate in all phases of the research process (Coughlin et al., 2019). The community member of the team with CLD was involved from conception to manuscript as an equal member of the team to the other main academic researcher, and performed all participant outreach during this study. This was done to help participants feel more comfortable interacting with a peer they identify with. There was also one academic mentor monitoring progress and one academic member who helped with transcription.

Results

We conducted 10 semi-structured interviews and received five narrative reflections from 14 women with CLD living in rural areas (one participant provided both a reflection and an interview). Of the 22 women originally contacted, three did not respond, two declined due to acute illness and the burden of discussing past traumas, and three initially responded “yes” but were subsequently unreachable. Participants in this study sought a diverse array of practitioners and used the term doctor liberally, often to refer to practitioners with an MD, DO, MD/MPH, or PA degree. Other providers were described by title (i.e., naturopath, acupuncturist). The focus of this study was not to compare providers, and so these terms intentionally remained broad, as reflected in the analysis next.

Discussion

This research recounts the illness narratives of 14 women with CLD to understand their illness experiences and how they navigate medical care. All participants navigated multiple allopathic and nonallopathic care modalities to find satisfactory care. As women living in rural areas, they had fewer provider options and needed to travel long distances to find supportive care. In addition to dealing with the substantial physical and emotional burden of chronic, nonlinear illness and in addition to illness burden, they have dealt with disbelief and discrimination by medical providers. Indeed, most doctors feel that they lack appropriate educational resources on CLD and sense increasing frustration from CLD patients (Glauser, 2019). Still, there exists a lack of definitive answers regarding how to diagnose and treat CLD, causing fear and confusion for patients and disbelief and disregard by physicians (Rebman et al., 2017). Suggestions from our participants for physicians managing patients with contested chronic illness center around active listening. Participants reported trusting practitioners who were willing to believe their experiences and engage with them as co-researchers of treatment options. Other resources suggest that physicians humbly acknowledge their position of power to label patient experiences, use shared decision-making, and focus on patient rapport not only to improve treatment for the contested illness but also to foster trust in seeking health care for other comorbid conditions (Rebman et al., 2017; Råheim & Håland, 2006). There is also power in maintaining an online community for patients to help one another cope with the disease (Huh & Ackerman, 2012).

The lives of women with CLD follow cyclical patterns of illness and wellness, trust and mistrust of medical treatment, and community connection and disengagement as they learn to become self-advocates for affirmative care. They are aware of the controversial nature of their illness and channel their frustrations into caring for one another through their Lyme community, recommending care and providing emotional support to one another. Kleinman (1978, 1988) used the Explanatory Model to describe a patient’s illness experience across popular, professional, and folk sectors, emphasizing the importance of illness narratives to understand patients’ experiences of disease outside of the hospital or clinic. In Figure 1, we integrated the illness narratives of the women living with CLD with the Explanatory Model to follow how they cross boundaries of professional (black cycle) and folk sectors (gray cycles) through their interactions with communities.

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Figure 1.

Cycles of health care navigation.

In the literature available on patients with CLD, two care-seeking models for CLD patients describe a linear pattern of seeking help from modern health care, becoming frustrated and feeling rejected, and then seeking alternative health care (Boudreau et al., 2018; Gaudet et al., 2019). We have shown that CLD patients not only respond to “push and pull forces” (Boudreau et al., 2018), but also fluidly interact with modern and alternative health care practices to seek treatment based on changes in their illness and influences from their community. We chose to represent the care-seeking model of patients with CLD as cyclical not only to reflect the choices of CLD patients when interacting with modern health care or alternative care, but also to reflect the recurring cycles of wellness and illness, certainty and uncertainty, and security and fear. The experience of living with CLD was nonlinear for participants in this study, a pattern similarly experienced by other patients with chronic illness, such as multiple sclerosis (Giovannetti et al., 2017). Our model also integrates the agency and independence CLD patients express in navigating multiple care modalities. This finding is supported by theories that those with chronic illness operationalize self-care in managing their illness through self-reflection, managing their care plans, and maintaining their health (Riegel et al., 2012). Our participants embodied the principles of “patient power” described in patients with similarly contested illnesses of chronic fatigue syndrome and fibromyalgia, where marginalized patients take on the role of educating themselves on their disease and seeking care until they find affirmative spaces (Åsbring & Närvänen, 2004). It is important for providers who treat CLD to recognize CLD patients’ power in making independent choices about who they seek for health advice and how they adhere to treatment.

Our research adds to past literature by using narratives to comment on not only the illness burden but also the difficult and nonlinear nature of navigating our medical system as a marginalized person. Our research describes the experiences of women; however, more studies focusing on other genders are needed to make conclusions about how gender impacts CLD illness experiences. The major strength of our research lies in the connection between our interviewer, a woman from a rural area living with CLD, and the similarly identifying participants. She was able to elicit deep and honest interviews with relative comfort even among participants who are skeptical of medicine. Also, our study has high internal validity because our participants approved the integrity of results to their experience.

Our research was limited by having illness narratives from only 14 participants. Reasons for not achieving a higher sample size include the nature of recounting traumatic experiences, the need for participants to attend to immediate health needs, and barriers created by the COVID-19 pandemic. We recognize that the participants in our study may be more interested in participating in this study to communicate negative experiences. It is more difficult to recruit subjects to speak about neutral or positive experiences, especially in the context of a controversial illness. Our study therefore more likely represents the mode of patient experience rather than the full range. We did not address how race, culture, faith community, or sexual and gender minority status affects health care interactions, all of which would be a useful focus for future research. Other future areas of research should address the diversity of treatment modalities available to patients and understand more about how they choose treatments to improve shared decision-making with patients.

Conclusion

Women living with chronic Lyme independently navigate allopathic and nonallopathic medical systems, relying on self-concepts of illness and support from their built Lyme communities. In addition to the emotional and physical burden of living with a complicated illness, they experience disbelief from providers and are acutely aware of the controversial nature of their condition. They invest in providers who listen to them and advocate for one another to receive affirmative care. In understanding these challenges, the medical community can improve the facilitation of care that reflects patient needs and goals.

Supplemental Material