Identity challenges and ‘burden of normality’ after DBS for severe OCD: a narrative case study

BACKGROUND: Deep Brain Stimulation (DBS) is an emerging and potentially powerful biological treatment for severe Obsessive-Compulsive Disorder (OCD), but the wider impact of the intervention and the sometimes dramatic reduction in symptoms need greater attention in research and practice. The aim of this case study is to explore the subjective experience of preparing for and undergoing DBS as a treatment for severe and treatment-refractory OCD and the experience of the impact of the treatment. METHODS: This study of subjective experience before and after DBS is based on narrative analysis of two in-depth interviews conducted in November 2014 (1 year after DBS surgery) with a 30-year-old man and his father, utilizing Consolidated Criteria for Reporting Qualitative Studies (COREQ) criteria. RESULTS: The parallel stories show how OCD posed severe challenges to identity and social milestones, with profound positive and negative impact on the person and family. Yet symptom remission was accompanied by expanded horizons, but also by uncertainty and intense distress associated with the changed identity. DISCUSSION: The concept of ‘burden of normality’ is discussed, in light of a treatment experience with DBS for OCD that gives rise to a new array of life challenges and opportunities, with implications for clinical care. CONCLUSIONS: The concept of burden of normality has, thus far, not extended to evaluations of people who have had DBS for severe OCD and that of their lived experience and recovery trajectory thereafter. This concept highlights that there is work to be done on expectations of normal living and on the transitioning self-concept, in the post-surgical period.