“Having Somebody that Gets it is Really Important”: Navigating Social Networks in Invisible Illness

• In Event: Disability and Social Connections

Abstract

Most research on social networks and health emphasizes the salubrious potential of social connection. Yet a growing body of research calls attention to the ways social networks may be a source of negativity, consistent with scholarship on chronic, stigmatized illnesses that has shown managing social relationships can be a source of strain that amplify the negative impacts of chronic illness on the self and wellbeing. However, despite widespread recognition of the prominent roles of both stigma and social relationships in the experience of chronic, invisible illness, limited research leverages Goffman’s conceptualization of the Own and the Wise to better understand processes of stigma in social relationships. Given these limitations, in this study I investigated the social relationships of individuals with migraine - a chronic, invisible, and stigmatized illness. Drawing on 54 in-depth interviews, I argue the contested and invisible nature of migraine amplifies the importance of having empathetic and understanding social ties that provide effective social support to ameliorate the potential negative impact of migraine on the self. Findings indicate widespread frustration over misunderstandings about migraine pushed interviewees to engage in emotionally taxing boundary work and education to clarify what migraine is to those around them. Because of this, there is increased value placed on social relationships where the other person truly understands. Next, drawing and expanding on Goffman’s typology of the Own and the Wise, I examined the kinds of social ties who understand and thus are less stigmatizing. Lastly, I demonstrated how individuals who do understand and empathize provide effective social support and assistance in navigating the experience of illness and disability through different means, such as by “seeing” one’s pain, adjusting role expectations, and allowing for needed time alone. Implications for Goffman’s theory, research on experiential homophily, invisible illnesses, and the management of migraine, are discussed.

Author

• Caroline V. Brooks, University of Kentucky