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:

When diagnosed with paranoid schizophrenia at age 18, I was immediately taught medical-model language to name and explain my experiences. I learned that contemporary inquiries into mental phenomena apply postenlightenment objectivism to psychosis, and these assumptions framed the vocabulary I was expected to use to communicate my experiences. Early into the diagnosis, when meeting with my doctors, I would attempt to describe my nonconsensus reality outside of the simplistic bucket of “hallucinations.” I would talk about the world shifting in front of my eyes and surfaces changing their textures under my hands. After mentioning these things, I was referred to a local substance use center, despite my doctor’s knowing that I had never used drugs. Over the following years, I found that even mentioning my alternative experiences was more challenging and tended to conform to clinical language, despite my not resonating with the terminology.

Nev’s personal reflections:

Similar to Shannon’s experience, my initial encounters with the ubiquitous DSM schizophrenia checklist left me feeling alone and misunderstood. What I was experiencing was in fact complicated and multilayered: profound shifts in the “feeling” of space and time and presences in things—that is, inanimate objects suddenly appearing animated or agentive and boundaries between self and others dissolving (for instance, feeling that other people could access my thoughts at all times). Early on, I responded to different clinicians in different ways: sometimes with angry denial (“none of the questions you ask actually get at my experiences”), sometimes with concession and defeat (defaulting to the only language that appeared to be available even as it oversimplified, reduced, or distorted the complexity of what I was actually struggling with); at other times, I decided that whatever was wrong with me must be my own idiosyncratic nameless madness. It was not until years after my initial diagnosis, when I started organizing “hearing voices” and “unusual beliefs” groups and engaging with many dozens of other people with psychosis experiences, that I came to understand how not alone I was, how unexceptional my experiences were.

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.