Psychosis Outside the Box: A User-Led Project to Amplify the Diversity and Richness of Experiences Described as Psychosis

In a seminal 2007 commentary on the phenomenology of psychosis and the DSM, leading schizophrenia researcher Nancy Andreasen weighed in on the unintended consequences and costs of DSM-based conceptualizations of psychopathology (1). As a member of the DSM-III psychotic disorders workgroup, Andreasen noted that the criteria that ultimately made their way into the DSM were in fact “never intended to provide a comprehensive description”—instead they were “gatekeepers—the minimum symptoms needed to make a diagnosis.” And yet, because clinical programs have overwhelmingly come to use the DSM as a primary textbook, these simplified and partial checklists have come to be seen as comprehensive. That is, what “schizophrenia” is understood to be by mental health professionals and, in turn, service users has become the de facto DSM schizophrenia checklist. In addition, Andreasen worries that the DSM approach has led to dehumanization—deeper, open-ended clinical inquiry has been replaced with a checklist.

The two of us—both diagnosed as having schizophrenia—were aware of these harms long ago. That is, for both of us, as we reflect below, the entrenched use of DSM checklists (and associated conceptualizations) meant that many of the experiences we found most distressing or life changing were never asked about, never recognized, and never named. There was no place for them, clinically or structurally.

Shannon’s personal reflections:

Nev’s personal reflections:

The Rethink Psychosis project, which we initiated in 2016, seeks to inspire an open dialogue or polyphony of diverse experiential accounts. Our goal was to solicit narratives in response to a series of open-ended questions through a widely accessible online survey. (See Table 1 for more details.) The survey was disseminated via social media, newsletters, and mailing lists and was permanently featured on a dedicated website developed for the project. In developing the survey questions, we intentionally focused on areas that have been demonstrably underrepresented in the mainstream psychosis literature, including visions (and quasi-visual experiences), felt presences (the sense that something or someone animate is present in one’s vicinity), and alterations of the experience of space and time (including proprioception). However, it is important to acknowledge that the phenomenological tradition in European psychiatry has consistently paid far more attention to this range of experiences (2, 3). European and British psychiatry also more often integrates lived experience perspectives in research and systems of care, allowing space for this complexity to be highlighted rather than diminished. Examples of multidisciplinary projects coproduced with service users that have no obvious parallel efforts in the United States include Durham University’s Hearing the Voice project (https://www.dur.ac.uk/hearingthevoice) and the University of Birmingham’s Renewing Phenomenological Psychopathology project (https://www.birmingham.ac.uk/research/mental-health/renewing-phenomenological-psychopathology/renewing-phenomenological-psychopathology.aspx).

More recently, along with our collaborator Marie Brown (at New York University), we added a parallel project—Rethink Negative Symptoms—that focuses on experiences falling under the “negative symptoms” umbrella. Given the unique status of the latter (which are often rated primarily on the basis of observation and third-party reporting rather than personal perception), we added questions regarding the perception and impact of the term negative symptoms, including whether contributors had experienced clinicians’ actively using or invoking the negative symptoms language.

The “Psychosis Outside the Box” Compilation

Psychosis Outside the Box is a project that we, the authors of this column, have developed, curated, and hosted to solicit, compile, and amplify direct accounts of experiences of psychoses that have been neglected in most research and teaching, including individuals’ experiences of visuals, felt presences, alterations of time and space, and negative symptoms. All narratives submitted to Psychosis Outside the Box are included in an open-access downloadable report, and the compilation is periodically updated. To date, we have received 248 English-language entries from around the world. Initial editing is minimal—no content is or has been removed or altered besides the correction of obvious typos or misspelled words. For a sample of entries, see Table 1 (for the full compilation, see www.rethinkpsychosis.weebly.com).

Discussion and Implications

Returning to Andreasen’s observations (1), we note that status quo clinician training, both in formal training programs and continuing education contexts, tends to revolve around the DSM. The training rarely acknowledges, much less explores in depth, the full range of experiences falling under the psychosis umbrella. The breadth and depth are immediately apparent in our compilation of accounts, as are the deeper challenges in finding the words and terms to adequately describe or, as one respondent put it, “do justice” to these experiences. We explore the implications and applications of our observations below.

Clinician Training and Education

As suggested by our above personal accounts, early encounters with conventional clinical assessment protocols and with clinicians whose understanding is bounded by a conventional (i.e., limited) conceptualization of psychosis, or who explain psychosis by using narrow frames of convention, carry real potential for harm. Young people accessing psychosis services for the first time have often had no previous contact with other people experiencing psychosis and therefore have no reference point for “locating” their experiences. Confronted with a very simplistic and partial set of terms and checklists, such service users may find it all too easy to conclude that they are not experiencing the same thing clinicians are expecting or hoping to recognize. Or, in perhaps subtler ways, the sense that “clinicians don’t understand what I’m experiencing” can lead to feelings of invalidation, frustration, or resentment. Other service users may simply adopt conventional language and framing and may never attempt to (or quickly give up on) the deeper collaborative processing of difficult-to-describe experiences.

Resources such as Psychosis Outside the Box might be used to instead complicate, deepen, and enrich clinical training and build awareness, sensitivity, and responsiveness to the fuller range of service user experiences, including the ways in which these experiences might be described, understood, and responded to. Such accounts might be paired with readings and training sessions grounded in phenomenological psychiatry, and conventional psychopathology measures should be counterbalanced with exposure to existing phenomenological measures such as the Examination of Anomalous Self-Experience (4) and Examination of Anomalous World Experience (5). Ideally—as we describe below—individuals with direct experience of psychosis would be an integral part of all such training efforts.

Integration in Clinical Settings

Pivoting to service users, we believe that Psychosis Outside the Box and similar resources have tremendous potential to reduce feelings of isolation, loneliness, and exceptionalism among those experiencing psychosis and help build a sense of community and belonging. Leaflets that introduce and describe the Psychosis Outside the Box project might be printed and made available in waiting rooms of psychiatric clinics or offices, or flyers with QR codes may be posted on the websites of health care agencies.

Language Development and Enrichment

All languages include formal and informal dialects, and the language used to describe mental health is no exception. Conventional psychiatric frameworks in the United States formalize one possible way of representing and describing psychosis. However, other alternatives exist, developed in the lived experience community, including the hearing voices movement and paranoia network in the United Kingdom. Moreover, we can look at the rich and complicated ways in which unusual experiences have been internationally and historically described outside late-modern psychiatry. If U.S. training programs and provider agencies more fully embraced the potential of diversified vocabularies and conceptual frameworks, the stakeholders affected would almost certainly benefit. In turn, new vocabularies might help call attention to possibilities for intervention and support that have otherwise been neglected. For instance, greater attention to experiential changes in tactile sensations (not necessarily tactile hallucinations but a range of alterations in the feeling of things) might lead to greater development and implementation of interventions and supports, such as actively using touch to reorient service users toward consensus reality.

Lived Experience Leadership

It is no accident that the vision for Psychosis Outside the Box was inspired by first-person experiences. As philosophers of science have long argued, science is neither value free nor free of the positionalities and perspectives of the researchers involved (6). A long history of exclusion has resulted in a body of knowledge and practice that primarily reflects the perspectives of those observing psychosis from the outside. Leadership by persons with lived experience will help counteract and remedy this historical imbalance by highlighting the importance of personal expertise—that is, hearing from service users themselves about priorities and where the field should be moving.

Conclusions

We hope that projects like Psychosis Outside the Box help document that psychosis involves a complex and rich set of experiences. Reductive approaches to naming and framing these experiences can cause significant direct harm—as is clear from responses to Rethink Negative Symptoms (e.g., contributors mentioned feeling that diagnosis of “negative symptoms” had a negative impact on their self-esteem and levels of stigma)—as well as indirect harm (e.g., through “invisibilization” or passive invalidation of the experiences of individuals living with psychosis). We strongly encourage both clinicians and researchers to engage with the accounts we have gathered, to meaningfully partner with lived experience stakeholders, and to rethink clinical engagement with these experiences. Such an approach is particularly valuable when taken early on (i.e., in the first episode of psychosis), when feelings among individuals experiencing psychosis of being misunderstood and alone can undermine trust in the system when trust is most needed.