نوع مقاله : مقاله پژوهشی
عنوان مقاله English
نویسندگان English
This study was conducted using a critical ethnographic approach and seeks to understand and explain how identity management takes shape in the experience of multiple sclerosis (MS) within the fields studied in Isfahan. The primary focus is on the gap between the invisibility of certain symptoms and the believability of suffering in everyday interactions. In this context, illness management is not merely a clinical matter; rather, it is a situated process of confronting stigma, negotiating identity, and reconstructing agency at the intersection of body, interaction, and structure.
– The research was conducted based on Carspecken's three-stage preliminary and five-stage primary critical ethnography model, drawing on the methodological account of Davoudi et al. (2025). The primary data consisted of 20 lived narratives included in the final analysis, and to complement and dialogically enrich the analysis, four supplementary interviews were also examined through digital interaction. The data comprised fieldwork, over twenty participant observation sessions, field notes, in-depth narratives, and supplementary digital data. The analysis was organized across three levels: the lived body, social interaction, and structure, with agency conceptualized as the mechanism linking these three levels. In the analysis, raw data, direct observation, analytical reconstruction, and interpretation of systemic relations were distinguished from one another, and disconfirming cases were retained to test analytical claims. In the process of member checking, interpretations were presented to participants for refinement, deepening, or revision, and this process was not treated as uniform confirmation of all interpretations.
The narratives demonstrate that the illness experience in the studied fields cannot be reduced to a linear sequence of illness, stigma, and exclusion. At the level of the lived body, fatigue, brain fog, pain, and motor impairment create a gap between internal sensation and external appearance; at the level of interaction, this gap manifests in the form of judgment, disclosure, concealment, and identity negotiation; and at the level of structure, the workplace, urban spaces, and institutional procedures can either exacerbate or mitigate this inequality. "The paradox of apparent health," "strategic concealment," and "reconstruction of agency" constitute the three central analytical concepts, while "the wound of honesty" emerges as a conditional empirical category in certain narratives of illness disclosure and its relational consequences. Disconfirming cases also demonstrate that disclosure does not lead to exclusion in all situations.
کلیدواژهها English