The lived experience of psychosis: a bottom‐up review co‐written by experts by experience and academics

Abstract

Psychosis is the most ineffable experience of mental disorder. We provide here the first co‐written bottom‐up review of the lived experience of psychosis, whereby experts by experience primarily selected the subjective themes, that were subsequently enriched by phenomenologically‐informed perspectives. First‐person accounts within and outside the medical field were screened and discussed in collaborative workshops involving numerous individuals with lived experience of psychosis as well as family members and carers, representing a global network of organizations. The material was complemented by semantic analyses and shared across all collaborators in a cloud‐based system. The early phases of psychosis (i.e., premorbid and prodromal stages) were found to be characterized by core existential themes including loss of common sense, perplexity and lack of immersion in the world with compromised vital contact with reality, heightened salience and a feeling that something important is about to happen, perturbation of the sense of self, and need to hide the tumultuous inner experiences. The first episode stage was found to be denoted by some transitory relief associated with the onset of delusions, intense self‐referentiality and permeated self‐world boundaries, tumultuous internal noise, and dissolution of the sense of self with social withdrawal. Core lived experiences of the later stages (i.e., relapsing and chronic) involved grieving personal losses, feeling split, and struggling to accept the constant inner chaos, the new self, the diagnosis and an uncertain future. The experience of receiving psychiatric treatments, such as inpatient and outpatient care, social interventions, psychological treatments and medications, included both positive and negative aspects, and was determined by the hope of achieving recovery, understood as an enduring journey of reconstructing the sense of personhood and re‐establishing the lost bonds with others towards meaningful goals. These findings can inform clinical practice, research and education. Psychosis is one of the most painful and upsetting existential experiences, so dizzyingly alien to our usual patterns of life and so unspeakably enigmatic and human.

Subjectivity, psychosis and the science of psychiatry

“…In this issue of the journal, Johnson et al 4 provide a comprehensive overview of the existing evidence in acute mental health care, and the gaps and opportunities for innovation. They argue convincingly that key steps are reducing coercion, addressing…”

“…The study by Fusar‐Poli and numerous co‐authors publish­ed in this issue of the journal 4 is an exceptionally important contribution. There have been previous attempts, especially by phenomenologists and qualitative researchers, to collaborate intensively with patients whose experiences they study, but never on such a broad‐based, quantitative scale.…”

“…Confronted with “madness”, the academic observer or man‐on‐the‐street stresses metaphors of darkness, confusion, and subterranean journeys, and this sometimes accords with the patient’s viewpoint. But, as Fusar‐Poli et al 4 report, patients may describe some “psychotic” states as shot through with a sense of almost blinding clarity and revelation. We must beware of projecting our own yearnings and value judgments onto the patients.…”

Racism and psychosis: an umbrella review and qualitative analysis of the mental health consequences of racism

“…This paradigm is important in terms of early intervention, but it is not without controversy (see [ 22 ] for a review of the pragmatic dangers). A meta-analysis by Paradies et al [ 23 ] concludes that racism is a social determinant of health and a review by Fusar-Poli et al [ 24 ] concludes that governmental support of innovations aimed at strengthening the social determinants of health is required. With this is in mind, mental health leaders and their institutions must prioritize professional competence that considers culture, racism and migration-related stress factors in the context of seeking to understand and remedy mental health burden [ 25 ].…”

Lived experience: A constant companion for the social work relationship

“…In this way, people and communities with lived experience bring particular experience and expertise to understanding how a particular problem or situation emerges and how best to respond or prevent it in the first place. For example, lived experience of psychosis and academic knowledge can be combined from the bottom up to inform policy, practice, research and education (Fusar-Poli et al, 2022). The power of lived experience expertise brings insight that is not immediately apparent to the outsider; it offers a relationship where expertise is not centrally located but relational.…”