نوع مقاله : مقاله پژوهشی
عنوان مقاله English
نویسندگان English
Objective: This critical ethnographic study explores identity management in the lived experience of Multiple Sclerosis (MS) in Isfahan. Focusing on the gap between invisible symptoms and the believability of suffering, it frames illness management as a situated process of negotiating identity and agency across the lived body, social interaction, and structure.
Method: The study employed Carspecken's critical ethnography model (Davoudi et al., 2025). Data included 20 lived narratives, over twenty observation sessions, field notes, and four supplementary digital interviews. Analysis spanned three levels—the lived body, social interaction, and structure—with agency as the linking mechanism. Raw data, observations, analytical reconstructions, and systemic interpretations were rigorously distinguished, retaining disconfirming cases.
Results: The illness experience cannot be reduced to a linear sequence of illness, stigma, and exclusion. At the embodied level, symptoms like fatigue and brain fog create a gap between internal sensation and external appearance; at the interactional level, this gap manifests through judgment, disclosure, and identity negotiation; and at the structural level, workplace and institutional procedures exacerbate or mitigate it. Core concepts are the "paradox of apparent health," "strategic concealment," and "reconstruction of agency," alongside the conditional "wound of honesty." Disconfirming cases show disclosure does not always lead to exclusion.
Conclusions: The core issue is not just symptom invisibility, but the gap between bodily visibility and the believability of suffering, creating inequality in interactions and institutions. The study demonstrates the interconnection of the lived body, social interaction, and structure, explaining agency's role in negotiating these conditions. These findings are context-specific, without generalization to all MS patients or Isfahan.
کلیدواژهها English
