Da disease à illness : experiência de enfermidade de mulheres diagnosticadas com fibromialgia

• Ano de defesa: 2018
• Autor(a) principal: Pereira, Diego Araújo
• Orientador(a): Henriques, Rogério da Silva Paes
• Tipo de documento: Dissertação
• Tipo de acesso: Acesso aberto
• Idioma: por
• Programa de Pós-Graduação: Pós-Graduação em Psicologia
• Palavras-chave em Português: Experiência de enfermidade; Narrativa; Fibromialgia; Saúde coletiva
• Palavras-chave em Inglês: Illness experience; Narrative; Fibromyalgia; Public health
• Área do conhecimento CNPq: CIENCIAS HUMANAS::PSICOLOGIA
• Link de acesso: http://ri.ufs.br/jspui/handle/riufs/9284

We all face the experience of pain in a given moment of our lives. More than a “physiological fact”, pain is an “existential fact”. When this pain becomes uninterrupted, it eliminates the structure of our everyday lives, jeopardizes our social relations, is addressed and in being so, affects the others, ceasing to be a private experience and becoming a public one. In an attempt to solve this problem, thousands of people daily resort to medical support and take to the treatment rooms not only their physical complaints, but all the affective, social and subjective repercussion that an illness state causes, and which makes up their health condition. In Brazil, 2,5% of these people are diagnosed with a pathology called fibromyalgia. From the point of view of biomedicine (disease), fibromyalgia is characterized as a syndrome that involves chronic pain in skeletal musculature, which attacks different body regions, being associated to fatigue, sleep disturbances and psychopathological symptoms, like anxiety and depression. However, the symptoms understood this way do not produce identifiable lesions, nor any anatomopathological substrate which evidences the disease and, thereby do not present laboratory parameters to guide both the diagnose and the interventions, forcing doctors to report to clinical parameters given by the patients’ speech. Facing the singularity of human suffering, in opposition to a universal pattern of human functioning. Because of this characteristic, the diagnose of fibromyalgia has been considered controversial and its treatment of difficult handling, since the biomedical model does not offer many tools to deal with the subjective and experiential dimension of the illness. In this work we seek to understand the fibromyalgia, or better what is designated as such by the biomedical knowledge (disease), in the perspective of the diagnosed subjects (illness). Attempting to understand which senses are built from the illness experience and which health care practices develop these subjects. Therefore, privileging the dialogue with the interpretative strand of medical anthropology (GOOD, 1994; 1977; KLEINMAN, 1978; 1980, 1988; YOUNG, 1982), that considers the compound health-disease-care as culturally built and understood, this work was set up as a qualitative approach research, which utilizing the individual narrative interview and active observation as data production techniques, attempted to understand the illness experiences of people diagnosed with fibromyalgia, linked to the University Hospital, in the city of Aracaju, Sergipe. Participated on this research, eight women from whom we tried to get closer, through their narratives, to their daily experiences, the meanings, and the practices of health care intersubjectively built on their processes of illness. The phenomenological aspects of these women’s experiences were constituted from a condition of physical limitations, affective commitments, symbolic violence, which directly impacts their personality, social relations and everyday practical activities, being experienced as a disruptive biographical event. Pain and fatigue placed themselves as fundamental symptoms of these illnesses, being responsible for the loss of work ability and restrictions in life that put them in a situation of greater dependence on the others. A relation which becomes conflictive, insofar as their symptoms are discredited by those with whom they live with and by the health professionals. The pain experience and other symptoms were marked under the sign of invisibility and of delegitimization, given the absence of something concrete to evidence the disease, which made difficult the construction of meanings that are shareable with the others. The suffering, placed in suspicion, produced in the discredited people a stigmatizing experience, generating the lowering of self-esteem, blame, production of depressive affections, which make interviewed women vulnerable to the aggravation of the illness. Under this latter aspect, this work revealed the understanding of gender inequalities as a factor or a context of vulnerability to the illness experiences. Because the gender mandates (PUJAL; MORA, 2014; MORA et al. 2017) for these women caused suffering, firstly against the compliance requirements of a role marked by injustice, and secondly by the lack of conditions of possibility for its realization. In this way, the present work was constituted as an effort to bring light to the experiences which until then were supposed to be of suffering, without, however, knowing under what contexts, circumstances and particularities they are modeled and nuanced.