The passing dilemma in socially invisible diseases: Narratives on chronic headache

This contribution concerns the experience of chronic diseases and how it disrupts the trajectory of a person's biography, undermining his/her identity, self-reliance and social relationships. The study focuses particular attention on those diseases which have not yet been fully acknowledged and can, therefore, be considered a socially invisible disease: chronic headache is one of these. Thirty-one life stories were collected from patients attending a specialized headache centre in Northern Italy, and selected in order to include all common varieties of chronic headache. Following the principles of grounded theory, interviews began by adopting a minimal theoretical framework which consisted of asking people how they became aware of the objective (disease), subjective (illness) and social (sickness) aspects of their condition. The analysis highlighted particular points in the patients' life trajectories: first, the biographical disruption that takes place because of the disease; second, how people succeed or fail in identity negotiation, which is vital for developing an acceptable social representation of the disease. Results show that patient's choices follow a vicious circle, where a partial social representation of the disease is produced. People who suffer from chronic headache face a dilemma in social relationships: should they conceal their disease, or make it evident? If they conceal, any possible social representation of the disease is denied, which could lead to carrying the burden of the disease alone, with no social support. On the other hand, making chronic headache visible could result in stigma.