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.
Highlights
Endometriosis is a progressive, sometimes incapacitating painful gynecological disease with abundant menstrual flow, characterized by the ectopic evidence of endometrial cells
This paper aimed to discuss the significance of the endometriosis experience of women who resort to health care services and is expressed as institutional violence
We addressed an axis of the intimate realm of the experience with endometriosis that concerns the dialogue between the treatment/pilgrimage symbols, named by one of the interviewed as endometriosis kit, uncovering the violence of unassured public service and the specific situations of institutional violence
Summary
Endometriosis is a progressive, sometimes incapacitating painful gynecological disease with abundant menstrual flow, characterized by the ectopic evidence of endometrial cells (tissue lining the uterus internally). Estimates point to 70 million women affected by the disease worldwide. It is one of the leading causes of hospitalization in industrialized countries. Understood as a modern woman’s disease, women with endometriosis feel guilty for ignoring what would only be expected from their bodies: marriage instead of work, children instead of career, private life rather than public life. Both discourses ontologize illness or body, corresponding to a supposed female nature
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