Tecendo narrativas: trajetórias de vida de mulheres negras com doença falciforme sob um olhar interseccional.

Abstract

Studies have proven that race, gender and social class are articulated, producing different experiences for men and women. Sickle cell disease (DF) is a chronic condition that marks the lives of black women with the disease and points out the intersectionality of race, gender and social class. It is assumed that being black and, especially with a chronic disease, contributes to the difficulty of these women in the Brazilian context by establishing themselves as active subjects and accessing health services in search of care. We sought to understand the life trajectories of black women with sickle cell disease and the meanings they attribute to the impacts of the disease in different areas of their lives, in addition to the processes in search of care. To understand these experiences, it is necessary to apply an intersectional analysis when looking at their life trajectories. This research analyzed the life trajectory of black women with sickle cell disease and got to know the experiences that these women have in their daily lives and their perceptions about living with DF. A descriptive / exploratory study with a qualitative approach was developed, based on the life stories of black women with DF living in Salvador and the metropolitan region. Ten black women with the disease collaborated with the research, of which eight have sickle cell disease type HbSS, known as sickle cell anemia and two with sickle cell disease type HbSC, with ages varying between 25 and 54 years old. All of them come from low-income families. The interviews were conducted between the months of December 2019 and July 2020. The feminist and anti-racist perspective was the basis for the development of this research. Racism is expressed in different forms in the life of the black population. Sickle cell disease profoundly marks the lives of people affected by the disease, as they prevent socializing and socialization processes from being fully experienced, these elements were considered when black women with SCD referred to the marks of the disease that made it impossible in social interactions. These women seek to transform the social role they were given, that of a black woman with a DF full of stigmas, stereotypes and restraint. We also identified in this study that black women with SCD report a dynamic in the health service that disregards their social and cultural conditions and disqualifies their experiences. It is concluded that it is necessary to recognize black women with sickle cell disease as active subjects, as this recognition opens space for shared care and a better quality of life for them. The interlocutors proved to be able to manage their own bodies, establishing the limits and possibilities promoting self-care. Even with all the difficulties that the symptoms of the disease had, these women developed strategies that allowed them to proceed with their plans, giving an account of what had been elaborated in their subjective constructions.