The complex lived experience of schizophrenia diagnosis: a thematic analysis of online forum posts

Abstract

Receiving a diagnosis of schizophrenia can be a life-changing experience with both negative and positive consequences. Previous research has identified important aspects of diagnosis, such as disagreement with the label, diagnostic shifts, stigma, and communication of the diagnosis. There is, however, relatively little research from the lived experience perspective. In this study, we investigated the lived experiences of receiving a schizophrenia diagnosis utilising a popular Reddit discussion forum. We used inductive thematic analysis to consider posts from 105 unique usernames and identified five themes. These were (i) Denial and acceptance; (ii) Stigma of diagnosis and selective disclosure; (iii) The complicated process of diagnosis; (iv) Losing, maintaining, and finding a sense of self; and (v) Receiving, finding, and providing support. Diagnosis is a complex personal experience where the same person can simultaneously accept and reject the diagnostic label. Greater attention is required to the lived experience of this diagnostic journey.