Influence of Cultural Context on Healing Process :Analysis of a Japanese Undiagnosed Rare Disease Patient

Diagnosis is necessary to start the healing process. However, data from Rare Disease UK, UDP (Undiagnosed Disease Program in America) and FORGE (Finding of Rare Disease Genes in Canada) unanimously show that patients with undiagnosed rare disease (URD) are on the increase. Living with URD makes it difficult for patients to understand and accept their condition, thus the healing process cannot start. This paper examines a Japanese URD patient’s experience, and explores their struggle to accept and narrate a condition without medical diagnosis.

Crystallization is the realization of what body failure means for one's biography (Strauss et al. 1987). My research examines this concept by analyzing a case study of a Japanese URD patient and her life without diagnosis. I conducted participant observation during my multiple stays with the patient, accompanied her medical checkups, as well as interviewed the patient, her family, doctors and members of her local community. Close observation of the patient and her family helped me understand their situation, interactions and medical resources. I found that although crystallization is said to occur when patients experience performance failures, this case indicates that it is rather the patients’ cultural background that plays a significant role in the process. Therefore, my findings add to the current theory by highlighting how some URD patients unconsciously adapt their biographies according to available cultural context, such as concepts of spirits, body or life. As URD patients’ conditions fail to be classified, illness trajectories and legitimate access to health care system remain limited. Conventional illness narratives focus on major chronic illnesses with names, but a growing body of research, including mine, suggests researchers should pay more attention to undiagnosed conditions, and especially to the influence of the patients’ cultural backgrounds.