Living with Parkinson's: Social Representation, Development and Identity Processes

Abstract

Parkinson's disease (PD), whose cause is unknown, is a chronic and degenerative condition that affects the central nervous system, body movements, and posture. Focusing on the subject of long-term illness, we aimed to analyze the relationship between the experience of the disease and the identity processes of people diagnosed with PD. Understanding that experiences are constituted in an interrelation with social reality, we also seek to scrutinize the social representations around the illness process and the influence of the PD diagnosis on the development and identity of the affected subject. Thus, we conducted semi-structured interviews with 10 participants from the Parkinson's Association of Pernambuco, whose data were analyzed using content analysis. The reports led us to understand that PD does not represent a socially known object and that most respondents did not know what the disease was about until they received the diagnosis, which emerged as a non-normative event in development, mobilizing aspects of their identities. The participants emphasize the need to adapt to the new dynamics of life imposed with the progression of the disease, whose effects are felt beyond the organic body, but also in changes in social relationships and in the way of perceiving the possibilities and limitations linked to the course of life. The experiences built by the participants in their individual and collective processes through the identity dynamics were also relevant in the speeches that evoked coping strategies, construction of knowledge, and anchoring attempts after the diagnosis.