Abstract

The term diagnostic odyssey refers to patients' difficult journeys to obtain a diagnosis, particular in the case of rare or contested illnesses. This paper describes the diagnostic odyssey of patients with New Daily Persistent Headache (NDPH), a rare headache disorder notable for its persistence, resistance to treatment, and impact on quality of life. Studies conducted to date have taken a medical perspective focusing on characterizing NDPH as opposed to patient construction of the illness experience. This study fills that gap by analyzing 17 semi-structured interviews with participants with NDPH, using the McGill Illness Narrative Interview (MINI). Their narratives detail significant moments of headache onset and when they realized that their condition was called NDPH. Thematic analysis identified themes including relief and devastation upon receiving a diagnosis, the importance of headache as singular, negative and positive experiences with providers, the impact of online support group, choosing friends with complex medical conditions, the cyclical nature of treatment, and maintaining hope. Participants utilized social media and social networks to navigate their illness experiences. Numerous participants also reported negative experiences with providers, which created opportunities for reinforcing identity through social networks, and cyclical interactions when medicalization of their condition was necessary for access to treatments and services. This paper advances narrative bioethics scholarship on diagnostic odysseys by arguing that social networks and cyclical engagement with medical systems support patient autonomy in terms of decision-making around uncertain treatments. It concludes with implications for physician-patient relationships that create epistemic justice for all patients, including patients with NDPH.