Between Labels and Lived Experience: Disagreement and Disengagement in Early Psychosis Services

Background: Psychosis diagnoses are grounded in clinical frameworks that often fail to reflect individuals’ personal or cultural understandings of their experiences. In early psychosis services, there is frequently an implicit or explicit expectation to adopt and identify with the received diagnosis, which can significantly limit opportunities for unique meaning-making. Disagreements with such diagnoses or conceptualizations may contribute to disengagement from care—stemming from mistrust in providers, feeling unheard, or a sense that one's experiences are being mischaracterized. Understanding these dynamics is particularly critical in early intervention contexts, where engagement is considered a key predictor of long-term outcomes. This study explores how individuals labeled with psychosis describe and interpret their experiences, and how these interpretations shape their relationships with mental health services. The analysis draws on preliminary findings from a multi-site qualitative study examining the pathways of individuals involved in early psychosis programs, with attention to trajectories in work, school, and the use of SSI or SSDI.

Results: Preliminary findings highlight five central themes: (1) Struggles for Validation—participants often described clinical language as inadequate or misaligned with their lived experiences; (2) Stigma and Dismissal—being labeled as “psychotic” contributed to experiences of epistemic invalidation, leading some to feel discredited or unheard in care; (3) Distrust in Providers—perceived provider inflexibility and failure to acknowledge alternative explanations fostered relational ruptures; (4) Treatment Hesitancy—diagnostic disagreement shaped skepticism around traditional treatment modalities, including around medication choices; and (5) Cultural and Contextual Dissonance—participants often drew on spiritual, cultural, or trauma-informed frameworks that clashed with biomedical conceptualizations.

Discussion: These findings emphasize the critical importance of relational, culturally humble, and person-centered approaches within early psychosis services. Disagreement with diagnosis should not be viewed as resistance, but rather as an opportunity for deeper engagement and shared understanding. Participants’ narratives reflect a core social work concern with dignity, self-determination, and the right to define one’s own experience. Importantly, diagnostic misalignment often reflected broader systemic issues—such as stigma, epistemic injustice, and culturally incongruent care models—that must be addressed to promote equity and trust in service delivery. As early intervention programs continue to expand, social workers are uniquely positioned to advocate for participatory, justice-oriented practices that move beyond compliance and toward true collaboration. Integrating narrative, cultural humility, and recognition of multiple ways of knowing may be essential for fostering sustained engagement and meaningful recovery.