“Not a lifestyle disease”: the importance of boundary work for the construction of a collective illness identity among people with type 1 diabetes

Abstract

In this study, we analyse how collective illness identities are created and sustained among people with type 1 diabetes using sociological perspectives on identity formation and symbolic boundaries. Drawing on 24 in-depth interviews, we show how collective illness identities are established and maintained through both inclusionary and exclusionary mechanisms. Informants discussed their collective illness identity by invoking common experiences and interests while also establishing experiential, biomedical and moral boundaries that distinguished them from other social groups. In particular, we highlight how the informants distanced themselves from type 2 diabetes on the basis of the latter’s status as a ‘lifestyle disease’. Our findings demonstrate the importance of boundary work for collective illness identity formation and the management of stigma, and the ambivalent relationship between illness identities and biomedical knowledge.