Gender and care in the context of rare diseases: exploring nuances of emotional support and the division of household labor.

This article explores the ways in which having a rare skin disease (pemphigus) can reveal and redefine individuals' interpersonal relationships and how they experience and use the support of loved ones. It examines two aspects of "care": emotional support and practical support (through the division of household labor). It takes a relational ontological approach that is especially attentive to the biographical repercussions of care, and its gendered dimensions in particular. Our analysis is mainly based on interviews with 25 individuals in France (13 women and 12 men) with pemphigus, a rare disease that affects the skin and mucus membranes that can be controlled through long-term medical treatment. Its burn-like lesions often take the form of blisters, making pemphigus a bullous disease. Use of the concepts of "caring for" and "caring about" prove heuristic in studying care relations, especially when taking a gendered perspective and probing underlying tensions. The distinction between caring "for" and "about" is also relevant to comprehending biographical disruption, which mainly results from a lack of emotional support when the negotiation of practical support has made it possible to normalize everyday life.

Taking care of oneself and others: The emotion work of women suffering from a rare skin disease.

In this article, we analyze the emotion work of women suffering from pemphigus, a rare skin disease. We suggest that this approach sheds new light on the upheavals caused by illness and more generally on the experience of illness itself. Our study draws on a series of 27 interviews with pemphigus patients whose average age was 57. We show that serious and chronic illness does not radically alter the feeling rules in place with close friends and family, despite the uncertainty and emotional upheaval confronting patients. The emotion work they carry out should be understood in light of roles and places established prior to the onset of the disease. Emotion work is embedded in the broader history of relationships with family and friends and prior episodes of illness help create particular configurations and expectations.

L'exercice de la médecine générale à l'épreuve des crises sanitaires : de Lubrizol à la COVID.

INTRODUCTION: Following the fire of the chemical products stored by the Lubrizol (Seveso upper tier) and Normandie Logistique companies on 26 September 2019 in Rouen, a research group bringing together general practitioners (GP), anthropologists and sociologists has undertaken a multidisciplinary qualitative investigation of general practitioners. The initial objective was to study the practice of primary care health professionals following the event. Initiated in February 2020, this survey was strongly transformed by the COVID-19 pandemic. COVID-19 changed the object of this study, imposed a reflection and a link between the two crises, where GPs found themselves once again on the front line. PURPOSE OF RESEARCH: To analyze the practices of general practitioners in situations of uncertainty in the context of these extraordinary events, namely an industrial fire and a viral pandemic. METHODS: Eighteen general practitioners were interviewed between February and July 2019 in semi-structured interviews conducted by a pair of researchers (sociologist and GP). An analysis inspired by the grounded theory was carried out on three levels (individual thematic analysis, paired confrontation, and collective restitution). CONCLUSION: In the health crisis contexts studied, GPs were confronted with more recurrent complaints while they had relatively little robust knowledge on which to base their responses. Finally, physicians responded to these situations of high uncertainty by drawing in original ways on their personal experiences of these crises.

Engagement in leisure and physical activities: analysing the biographical disruptions of a rare chronic disease in France.

Using the biographical disruption literature, this article examines how the experience of illness - in this case, pemphigus - reconfigures engagement in leisure activities, and how these activities are integrated into the biographies of persons with a rare chronic illness. Among the changes imposed by the illness, leisure activities are especially enlightening, as they primarily depend on the body. The article is based on a study of 50 interviews of persons with pemphigus, a rare and chronic dermatological disorder. The ways in which they relate to leisure activities give a new perspective on biographical disruption. The first striking observation is how diverse they are: illness does not level social differences or lived experience, and can even further consolidate commitment to engagements. We identified four types of engagement in leisure activities: disengagement, which reveals biographical disruption; adapted engagement, leading individuals toward low-risk physical activities; engagement in medicalised normalisation; and salutary engagement.

Individuals With the Rare Disease Pemphigus: A Quest for Diagnostic.

This qualitative study conducted in France of "individuals living with a pemphigus" (ILPs; N = 54) highlights the taxing diagnostic trajectory of those suffering from these rare autoimmune diseases. Beyond enduring a diagnostic period that may prove long, during their numerous medical appointments, these individuals internalize the expectations of the medical professionals who are treating them. In some cases, numerous inconclusive medical tests and, at times, a doctor's condescension may push the patient toward a process of renunciation. This article relates the ILPs' critiques of the medical work conducted during the trying diagnostic period.