Medicalizing or Demedicalizing? : Evaluating the Impact of Diagnosis and Undiagnosis on Individual Patients’ Lives.

Since 2014 we have been interviewing 54 patients with rare diseases and rare conditions. This presentation will focus on the long term impact of obtaining diagnosis in individual patients. We will select 7 cases that include over 20 years undiagnosed periods, of which 5 patients obtained their final diagnosis and 2 remained undiagnosed. Analyzing the difference between pre- and post-diagnosis periods in each patient and also between the situations of diagnosed and undiagnosed patients could reveal the impact of diagnosis and undiagnosis on each patient’s life. While the medicalization of each disease is well studied on social level, its impacts on individual patients are not sufficiently studied. We will show that the medicalization on each patient’s level includes several dimensions and involves such complex issues like liminality, stigma and dilemma of difference.

Medical diagnosis presupposes medicalization of the condition on a social level. However, obtaining diagnosis does not always mean medicalizing the condition and obtaining no diagnosis does not always mean demedicalization of the condition. There are several different levels and dimensions of medicalization & demedicalization and their relationships with diagnosis and undiganosis. Using the concepts of sickness (social dimension), illness (individual dimension) and disease (medical dimension), I like to analyze the complex situation of individuals experiencing serious ill conditions during their lives. Main focus will be on the impact of medical diagnosis and undiagnosis in sickness and illness dimensions of the conditions in the case of rare diseases on which not only general public but also general health care providers have little information and images. The analysis will also shed some light on such complex issues like liminality, stigma and dilemma of difference and their relationships with medicalization, as most of our interviewees experienced these situations during their different life stages regardless of whether they obtained diagnosis or not.