Signifiant without Signifie :Diagnostic Language and Illness Experience in Rare Disease Patients.

We have been interviewing rare disease patients since 2013 to investigate the impact of disease rareness on patients experience. Currently we interviewed 40 patients with rare disease or rare symptoms. One of our research focus is the impact of diagnosis on patients illness experience. Most of our interviewees were enthusiastic about obtaining diagnosis. Diagnosis exert great influence on patients biography. However, unlike the common chronic disease diagnosis most of the rare disease names received by patients contain no significant information as to the etiology, treatment and prognosis of the patients’ conditions. This means they received the words with no referent. The diagnosis brings patients to nowhere. The disease name here is close to proper noun, like John, meaning just that he/she is a kind of human. Although the diagnosis brings the patients to nowhere, it has a significant impact on patients experience. To many patients John is a starting point, as if they were given a sign that should be deciphered themselves. Among numerous medical terminologies diagnostic terms occupy special positions because they have both esoteric and exoteric connotations. It is addressed both to medical professionals and patients. With this function in exoteric communication it can make a “human kind” from individual patients (Hacking 1995). Focusing on how patients narratives refer to their diagnosis experience we will show how the hollow diagnostic terms bring patients to specific “human kinds” without making any difference to their medical conditions.