Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses.

Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous.

Race, Toxic Exposures, and Environmental Health: The Contestation of Lupus among Farmworkers.

Extant research has established that low-wage workers of color are at higher risk for occupational exposures. While the medical sociology literature regarding contested illness provides insights into the dynamics surrounding workplace exposures, some environmental illnesses such as lupus have gotten scant analytical attention. This is a significant gap because women of color, who are more likely to hold these high-risk jobs, are disproportionately affected by the disease. We examine a case of pesticide exposure among Black women farmworkers in Florida. We investigate how race and occupation intersect to shape lived experiences with toxics and what role race plays in the process of contesting exposures and illness. Our data include in-depth interviews (N = 36), media coverage, and archival materials. Our findings indicate that race-related factors played an important part in shaping the farmworkers' experiences with exposures, illness, and interaction with elite actors.

Medical Gaslighting and Lyme Disease: The Patient Experience.

Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated "notifiable disease". As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of "contested illnesses", which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

"They Kept Going for Answers": Knowledge, Capacity, and Environmental Health Literacy in Michigan's PBB Contamination.

The Michigan PBB Oral History Project documented community residents' descriptions of a large-scale chemical contamination-the PBB contamination-that occurred in Michigan in 1973. These oral histories document residents' and others' experiences during and after the contamination. We conducted a grounded theory qualitative analysis of 31 oral histories to examine the experiences of community members, researchers, lawyers, and others who actively sought out and contributed essential information about the contamination and its impacts. Our findings highlight several challenges encountered in the development of this knowledge including four central themes-contested knowledge, community skills, inaction, and uncertainty. Integrating environmental health literacy, community capacity, and contested illness frameworks, we examine the contributions of community residents, scientists (from inside and outside the community), and others to the development of knowledge to inform decisions and sustain action regarding this large-scale contamination. We close with a discussion of lessons learned regarding efforts to build environmental health knowledge within uncertain and often contested contexts and for promoting environmental health and action related to large-scale chemical contaminations. Our findings suggest the importance of integrated frameworks for examining and promoting the critical role of community skills, leadership, participation, sense of community, and community power in promoting environmental health.

"It's not all nice and fun": Narrating contested illness on YouTube and Instagram.

This empirical study draws on insights from narrative theory to tease out how women with a contested illness narrate their experiences on social media. Based on 13 months of online observations between 2017 and 2019, I analyse how a sample of eight highly active Dutch female social media users share their illness on YouTube and Instagram. In addition, I interviewed five of them. Through their online performances, the women in this study illustrate their investment in self-care practices, whilst simultaneously laying bare the limits of these practices in ensuring permanent well-being. Central to transmitting their experiences is the performance of balanced positivity; meaning that illness is dealt with in a predominantly 'positive' way, as well as through the occasional display of (moments of) hardship. I identify three main aspects of this performance of balanced positivity, namely: (1) appearances, (2) mindset, and (3) presence. The practice of balanced positivity is congruent with the concept of legitimacy narratives, because it allows women with a contested illness to show their efforts to cope with their condition as well as the myriad challenges that remain despite these efforts.

"Because the country, it seems though, has turned their back on me": Experiences of institutional betrayal among veterans living with Gulf War Illness.

People living with medically unexplained symptoms (MUS) often have poor quality of life and health outcomes. Many struggle to engage with and trust in healthcare systems. This qualitative study examined how experiences with institutions influence perceptions of medical care for MUS by applying the theoretical framework of institutional betrayal to narratives of U.S. military Veterans living with Gulf War Illness (GWI). Institutional betrayal refers to situations in which the institutions people depend upon for safety and well-being cause them harm. Experiences of institutional betrayal both during active military service and when first seeking treatment appeared to shape perceptions of healthcare in this sample. Veterans expressed the belief that the military failed to protect them from environmental exposures. Veterans' concerns regarding subsequent quality of healthcare were intrinsically linked to a belief that, despite official documentation to the contrary, the predominant paradigm of both the U.S. Department of Defense and the U.S. Department of Veterans Affairs (VA) is that GWI does not exist. Veterans reported that providers are not adequately trained on treatment of GWI and do not believe Veterans' descriptions of their illness. Veterans reported taking up self-advocacy, doing their own research on their condition, and resigning themselves to decrease engagement with VA healthcare or seek non-VA care. The study's findings suggest institutional level factors have a profound impact on perceptions of care and the patient-provider relationship. Future research and policy aimed at improving healthcare for people living with MUS should consider the concept of institutional betrayal.

What was lost, missing, sought and hoped for: Qualitatively exploring medical crowdfunding campaign narratives for Lyme disease.

Lyme disease remains a contested illness in Canada, thereby making the diagnostic and treatment journeys difficult for some people. One outcome of this is that increasing numbers of people are turning to medical crowdfunding to support access to alternative therapies, non-local health care providers and assist with managing the costs of everyday life. In this analysis, we qualitatively explore the narratives shared in Canadians' crowdfunding campaigns to support Lyme disease treatment or diagnosis to identify whether or not any common elements shared in these narratives exist, and if so, what they are. We identified 238 campaigns for inclusion from three prominent crowdfunding platforms. Thematic analysis of the campaign narratives shows four consistent themes shared in these campaigns: what is lost (e.g. bodily ability), what is missing (e.g. local care options), what is sought (e.g. funds to cover treatment abroad) and what is hoped for (e.g. return to wellbeing). These themes demonstrate the highly personal and emotional nature of medical crowdfunding, particularly in the context of a contested illness that may lead some to question the legitimacy of one's financial need. This analysis contributes valuable new insights to the nascent scholarship on medical crowdfunding, and particularly to our understanding of how people communicate about their health and bodily needs on this public platform. It also identifies important directions for future research, including the potential for crowdfunding narratives to be used for advocacy.

How do women suffering from multiple chemical sensitivity experience the medical encounter? a qualitative study in Spain.

PURPOSE: Multiple Chemical Sensitivity is a condition principally suffered by women. As with fibromyalgia and chronic fatigue syndrome, Multiple Chemical Sensitivity is usually included among the so called "contested illnesses", defined as illnesses whose cause, diagnosis, prevalence and even existence are subject to controversy. This article seeks to explore how women with Multiple Chemical Sensitivity experience this contested illness, through their own descriptions of diagnostic processes, search for treatment and encounters with different health professionals. We aim to observe these experiences in detail and to identify aspects that could improve care for Multiple Chemical Sensitivity sufferers. METHOD: Qualitative design. We performed personal in-depth interviews, which were recorded and transcribed to conduct a qualitative content analysis supported by Atlas.ti-7. SUBJECTS/PATIENTS: 22 women diagnosed with Multiple Chemical Sensitivity in Spain. RESULTS: Two main categories were identified in the interviews: (1) unavoidable barriers: patients' exposure to chemicals and the absence of treatment, and (2) Skepticism on the part of care providers and lack of recognition in the process of diagnosis. CONCLUSION: Training and above all awareness raising strategies are needed to address health professionals' prejudices regarding the existence of contested illnesses such as Multiple Chemical Sensitivity. These prejudices hinder diagnosis and medical follow-up, and add negative emotions to the physical limitations already suffered by patients.IMPLICATIONS FOR REHABILITATION Multiple Chemical SensitivityIt is important to promote a compassionate and empathetic attitude among health providers, in order to avoid rejection and delegitimization of the experiences of women with Multiple Chemical Sensitivity.Multiple Chemical Sensitivity protocols should be developed and implemented to give skills to health professionals to assist patients with Multiple Chemical Sensitivity.These protocols should include avoidance of exposure to chemicals present in healthcare facilities.Training programs for health providers should include not only knowledge, but awareness raising about the characteristics and severity of contested illnesses such as Multiple Chemical Sensitivity.Health providers should avoid stigmatizing patients by psychologizing their symptoms and be aware of the existence of stereotypes regarding women suffering from Multiple Chemical Sensitivity.

'Not a film about my slackness': Making sense of medically unexplained illness in youth using collaborative visual methods.

Persistent medically unexplained symptoms have debilitating consequences for adolescents, dramatically altering their social world and future aspirations. Few studies have focused on social and moral aspects of illness experience relevant to adolescents. In this study, the aim is to explore these aspects in depth by focusing on a single case and to address how young people attempt to create social accountability in a search for meaning when facing illness and adversity. The study is based on a view of meaning as dialogically constituted during the research process, which calls for the use of collaborative film methodology and life-mode interviewing. With a dialogic-performative approach to a narrative emplotment of medically unexplained symptoms, we present Peter as intentional and purposive, and as a person who in a reflective process of meaning making claimed his own voice and developed his own strategies of coping with his illness. The analysis brings forward a narrative of suffering, hope and intentionality that is configured by the immediate limited possibilities of agency due to Peter's medical condition. It is, however, configured to an even greater degree by aspirations, that is, to become an accountable person through social experiences and to meet sociocultural and moral expectations of being an adolescent. The study provides insight into relational and existential aspects of meaning making in dealing with contested illness in youth and points to the potential of visual and other experience-near methods for supporting adolescents in their coping attempts and in overcoming communication barriers in everyday life and clinical encounters.

Vulnerable articulations: the opportunities and challenges of illness and recovery.

Medical anthropology overwhelmingly reveals vulnerability as a problem of powerlessness. Vulnerable groups and individuals are those exposed to the pernicious effects of inequalities, injustices, and oppressive political realities. This largely pejorative stance, we argue, simplifies the place of vulnerability within human experience and in relation to the body, health and illness. By showcasing a range of interlocking vulnerabilities, this paper reveal the spectrum of positive and negative vulnerabilities that affect health and recovery. Through the concept of vulnerable articulations, this paper argues that health and illness experiences simultaneously create and require a range of different interconnected vulnerabilities, some of them harmful, and some of them life affirming. Ethnographically, this paper explore the concept of vulnerable articulations through two contrasting case studies: a group of British and New Zealand nuclear test veterans seeking compensation from the state, and clients of equine therapy in New Zealand. These case studies reveal that understanding human vulnerability requires a close attention to how people navigate between the diverse vulnerabilities that they face, and that attaining well-being often involves harnessing positive vulnerabilities in order to lessen the effects of damaging vulnerabilities.

The enduring legacy of black lung: environmental health and contested illness in Appalachia.

Over the past twenty years there has been a deadly resurgence of coal workers' pneumoconiosis (CWP), commonly known as black lung disease. While increased prevalence of the disease is alarming, these data only capture cases where CWP has been officially recognised. We argue that many more cases of the disease are going unreported. Drawing from contested environmental illness literature, we examine issues surrounding diagnostic uncertainty and medical surveillance. We draw from qualitative data on black lung that includes in-depth interviews, observation and document analysis. Findings indicate ongoing ambiguity and contestation over diagnosis of the disease, ranging from clinical and legal debates to concerted efforts to limit official recognition. While health screenings are currently available to miners, our results indicate low participation rates based on disincentives for early detection, logistical problems, and economic fears. Miners fear workplace discrimination and retaliation for participation in black lung screening programmes. Implications for public health policy and future research are discussed.

"It Was Not Me That Was Sick, It Was the Building": Rhetorical Identity Management Strategies in the Context of Observed or Suspected Indoor Air Problems in Workplaces.

Suffering from a contested illness poses a serious threat to one's identity. We analyzed the rhetorical identity management strategies respondents used when depicting their health problems and lives in the context of observed or suspected indoor air (IA) problems in the workplace. The data consisted of essays collected by the Finnish Literature Society. We used discourse-oriented methods to interpret a variety of language uses in the construction of identity strategies. Six strategies were identified: respondents described themselves as normal and good citizens with strong characters, and as IA sufferers who received acknowledge from others, offered positive meanings to their in-group, and demanded recognition. These identity strategies located on two continua: (a) individual- and collective-level strategies and (b) dissolved and emphasized (sub)category boundaries. The practical conclusion is that professionals should be aware of these complex coping strategies when aiming to interact effectively with people suffering from contested illnesses.

Diagnostic experience of patients with fibromyalgia - A meta-ethnography.

Objective To examine how individuals experience the process and consequences of receiving a diagnosis of fibromyalgia syndrome. Methods A systematic literature search of qualitative studies up to May 2016 was performed. Twenty-eight reports including information on patients' diagnostic experiences were subjected to an interpretive analysis in accordance with the principles of meta-ethnography. Results Years were normally spent consulting specialists in an attempt to confirm the reality of symptoms and make sense of the illness. Great relief was felt at finally achieving the fibromyalgia syndrome diagnosis. However, relief waned when therapies proved ineffective. Health professionals and others questioned whether individuals were genuinely ill, that the illness had a psychological nature, and whether they were doing their best to recover. The diagnosis did not provide a meaningful explanation of individuals' suffering and had limited power to legitimate illness. Patients felt blamed for their failure to recover, threatening their personal credibility and moral identity. Conclusion The fibromyalgia syndrome diagnosis has limitations in validating and making sense of patients' illness experiences and in providing social legitimation of their illness. Social relationships are strained during the diagnostic process and in the course of ineffective therapies.

(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS).

Sufferers of medically unexplained conditions that are not observable in the clinic can experience multiple layers of invisibility: a lack of biomedical diagnosis; legal skepticism; political disinterest; and a loss of their prior social identity. For those with environmental sensitivities, this is compounded by literal hiddenness due to often being housebound. Drawing on an online survey of people with multiple chemical sensitivity, this article examines how the everyday experience of invisibility is mitigated by engaging with other patients online. Respondents used online forums to undertake various forms of "visibility work," including attempts to crystallize their suffering into something recognizable medically, legally, and politically, and to reconstruct an identity considered valid and deserving-although the therapeutic potential of online support was contingent on intra-group politics. This study demonstrates that online forums allow biomedicine's "invisible others" to struggle for alternative forms of recognition beyond the clinical gaze.

Parent use of cannabis for intractable pediatric epilepsy: Everyday empiricism and the boundaries of scientific medicine.

Cannabis is an increasingly sought-after remedy for US children with intractable (biomedically uncontrollable) epilepsy. However, like other complementary-alternative medicine (CAM) modalities, and particularly as a federally illegal, stigmatized substance, it is unsanctioned by mainstream medicine. Parents are largely on their own when it comes to learning about, procuring, dispensing, and monitoring treatments. Exploring how they manage is crucial to better assist them. Moreover, it can illuminate how 'research' done on the ground by laypeople variously disrupts and reinforces lay-expert and science-non-science divides. To those ends, in 2016, 25 Southern California parents who used, had used, or sought to use cannabis pediatrically for epilepsy/seizures were interviewed regarding their evidentiary standards, research methods, and aims when trying the drug. Parents generally described their work as experimentation; they saw their efforts as adhering to authorized scientific practices and standards, and as contributing to the authorized medical cannabis knowledge base. Findings subverted assumptions, based on an outdated stereotype of CAM, that cannabis-using parents do not believe in biomedicine. Indeed, parents' desire for their children's biomedical demarginalization, combined with biomedical dependency and a high caregiver burden, fueled a collaborative stance. Implications for understanding the boundaries of science are explored, as are norms for parent agency as ill children's care managers, radicalization among people affected by contested illnesses, and the future of 'medical marijuana.'

Experiences of persons with multiple chemical sensitivity with mental health providers.

In this paper, we summarize the results of an online survey of persons in the United States with chemical intolerance/multiple chemical sensitivity who sought help from mental health providers, including counselors, psychologists, psychiatrists, and others. Respondents reported on their most recent contact with a provider, describing reasons for the contact, accommodations requested and received, and suggestions for how the experience could be more helpful. Overall, though clients were accommodated in small ways, some received no accommodation, and many felt that the providers needed to be more knowledgeable regarding chemical intolerance. Results are discussed in terms of the importance of providers becoming more aware of multiple chemical sensitivity and more willing to make their services accessible to these clients.

Unmet health care needs for persons with environmental sensitivity.

Studies of unmet health care needs have shown that women, people with poor health, and people with lower socioeconomic status are more likely to report having unmet health care needs. In this study, we examined the types of and reasons for unmet health care needs in 465 people with environmental sensitivities. A second area of inquiry involved negative reactions to general anesthesia. Results showed that the most common barriers to receiving care were the inability to find a provider who understands environmental sensitivities and a lack of accessibility due to chemical and electromagnetic exposures in health care environments. Lower income and poorer health (longer illness, a worsening or fluctuating course of illness, and a higher level of disability) were significantly correlated with the total number of reported unmet health care needs. Some people with environmental sensitivities reported having negative reactions to anesthesia of long duration; most common were nausea and vomiting, fatigue, and reduced cognitive ability.

"But we're not hypochondriacs": the changing shape of gluten-free dieting and the contested illness experience.

"Gluten free" exploded onto the American foodscape in recent years: as of January 2013, 30 percent of U.S. adults reported reducing or eliminating gluten in their diets. How do individuals participate in the expansion of gluten-free dieting, and what are the implications of that expansion? This article is based on 31 in-depth, semi-structured interviews conducted between May and October 2012 with gluten-free and -restricted persons. I identify three interrelated factors contributing to the expansion of gluten-free dieting among non-celiacs. Participants broaden the lay understanding of gluten-related disorders, undermine biomedical authority, and diagnose others. Such participant-driven change, termed self-ascriptive looping, is one factor in the diet's rapid popularization. I show how participants question the doctor-patient relationship and increase social contestability for other dieters. My findings challenge previous work on contested illness and suggest food intolerances may require a reconceptualization of contested illness experience.