Stigma, Diagnosis, and Identity

This post is by Aneela Khan.

Unusual experiences

In a recent paper co-authored with Lisa Bortolotti, Andrew Fox, and Matthew Broome, forthcoming in Journal of Medicine and Philosophy, I explore how the stigma associated with a diagnosis of psychosis can result in epistemic injustice, wrongs done to someone specifically in their capacity as a knower. Drawing on findings from the Epistemic Injustice and Psychosis (EIP) study, I highlight how both testimonial and hermeneutical forms of epistemic injustice arise in clinical encounters and in people’s wider social worlds.

The study involved interviews with people diagnosed with schizophrenia spectrum disorders (clinical participants) and people who had unusual experiences without receiving a diagnosis (non-clinical participants). While both groups encountered stigma, it was only the clinical participants who experienced a significant loss of credibility and identity transformation as a result of being diagnosed. For many, the label of psychosis, often associated with stereotypes of dangerousness and incompetence, became a lens through which others interpreted their thoughts and behaviours, often overriding their own self-understandings.

Person having a religious experience

An example comes from two clinical participants, Anna and Zara. Both had experiences they initially interpreted through spiritual or religious frameworks. Anna felt guided by God, while Zara understood her voices as a punishment for her sins. In both cases, these meanings were overlooked or pathologised during their engagement with mental health services. Although both eventually found aspects of the medical model helpful, especially in accessing support, they also described feeling “funnelled” into a diagnostic identity that clashed with their personal beliefs and values.

I use the concept of epistemic injustice to make sense of these experiences. Testimonial injustice occurs when someone’s credibility is unfairly deflated, something that happens frequently to people with a diagnosis of psychosis. Hermeneutical injustice arises when individuals lack the social resources to make sense of what is happening to them, or when their interpretations are dismissed. This was particularly evident in how spiritual or cultural frameworks were marginalised in clinical settings.

Communication

Importantly, I found that non-clinical participants, those with unusual experiences but no diagnosis, were often able to make sense of what they were going through using personal, cultural or religious resources, and did not report the same harms to their credibility or sense of self. This comparison suggests that epistemic injustice is not caused by the experiences themselves, but by how they are framed and responded to by others.

I make several recommendations for clinical practice, including: 

• creating open epistemic spaces where patients can express alternative interpretations of their experiences, 
• supporting meaning-making; and 
• improving communication around diagnosis. 

By exploring the interplay between stigma, identity, relationships, and knowledge, we can contribute to  structural changes to reduce stigma and promote epistemic justice, not only in clinical settings, but also within families, communities, and wider society.