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The experience of illness of women with endometriosis: narratives about institutional violence

Abstract

This paper conjures up the centrality of the relational category of gender to shed a light on women’s life narratives with a chronic disease named endometriosis. It aims to discuss the meaning of the illness experience of women with endometriosis in the interface with institutional violence. Based on Bertaux reference, in the Narratives of Life method, twenty women participated in this research. They were invited from two virtual spaces of discussion and gatherings about living with endometriosis. Interviews were conducted in person in the States of Rio de Janeiro, São Paulo and Minas Gerais circuit. Authors sustained the theoretical approach and addressed the experience of chronic illness as a sociocultural phenomenon, metaphorical readings of the problem and criticism of institutional violence. The results identify situations of gender/institutional violence perpetrated in various women care settings. They are expressed through the trivialization of women’s discourses; user-physician tensions, where the supposed lay knowledge appears as an insult to official biomedical knowledge and, mainly, the difficult access to services, leading women to a care pilgrimage and to submit themselves to care types not necessarily based on best practices.

Endometriosis; Violence; Gender identity; Women health; Public health

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