By Anna K. Swartz

Image drawn by Anna Swartz

Since this is, in many ways, a post about narratives, I have decided I should begin with mine. 

Every morning I take an oblong green and white pill, every night I take another of the same oblong green and white pill. I also take circle and oval pills. This helps in keeping me tethered to reality, functioning with fewer hallucinations and delusions. My official diagnosis is schizoaffective, bipolar type 1. Schizoaffective disorder is closely allied to schizophrenia but is rarer, striking about 0.3 percent of the population. It’s also by many accounts “worse” in that it incorporates the severe depression and psychosis that is characteristic of bipolar disorder, as well as the loss of touch with reality wrought by schizophrenia. I find it easier to admit to being bipolar than I do schizophrenic. I have found a much more positive reception to bipolar disorder. It’s a disease often associated with creative individuals who are highly intelligent and have traits that many see as advantageous, even covetous. That is, there is something romantic about the disease even as it wreaks havoc in a person’s life. It’s also much easier to talk about depression and mania because the chances are overwhelming that during the span of a normal lifetime, we will come face-to-face with some manifestation of mania or depression, either in ourselves or someone close to us. It’s familiar and understandable. That is less the case when it comes to hallucinations and delusions. Everyone has an inner voice that they can talk to sometimes in their thoughts. But hearing voices is not like that. Auditory hallucinations sound like they are coming from outside your head. Have you ever tried to write or read while people are having a loud conversation around you? Now imagine them screaming at you. This is how I feel most days. The voices are almost always caustic and denigrating, telling me that I would be better off dead. Delusions are also hard to explain. With a head fizzing with mad thoughts, I’ve stared up at ceilings with blue and brown swirling irises like cars in the center of a volcano. More often, I will see objects sitting on surfaces and watch them tip over or fall out of the corner of my eye only to blink and have them be static. I also experience paranoid delusions which are commonly manifested as thoughts that others are plotting against me, following me, watching me, or talking about me. 

More often, I am overcome by the so-called “negative” symptoms of schizophrenia where I exist in a numb fugue state that swallows me whole for months, punctuated occasionally by a jump in my mood and a frantic need for overachievement, which becomes even more frantic when I’m manic. During this time, I commit myself to grandiose plans, devour books about philosophy and theory, and generally pass myself off as an ambitious and successful scholar. However, for every seventy-two hours of blissful productivity, there are weeks of unrelenting depression, ruinous impulsivity, and monomania where I am terrified to be around people for fear of scaring them away; I stay in bed, hoping to sleep to quiet the world down. It’s these times when I about occasionally find a spark but not the creative or positive kind, the urge to problem solve, to solve my problems permanently. Not surprisingly, I have been hospitalized several times.  

Image drawn by Anna Swartz

Ultimately, having a sense of “who I am” is a profoundly problematic one. Identity is the structure and detail of a person, what you believe in and where you see yourself in relation to others and the world around you. When someone has a stable sense of self they are able to identify themselves as being the same person in their past, present and future, with of course the expected changes one goes through as time passes and events happen. So, what does it mean when your sense of self is disturbed? My delusions and hallucinations often occur with pained self-awareness, leaving me unable to trust who I am or where I am. For me, psychosis is not a single moment of “conversion” between one state of mind to the next. If there is a boundary between normal and insanity, I’m often in the liminal state of constantly questioning the reality that I had lived contently with for most of my life. The songs I hear playing in the wind and the nonexistent swat teams I see through my window at night are probably not real, but I worry of becoming addicted to the idea that they are. The boundary between fantasy and lived reality is porous, and when this happens, I worry that I have taken some irrevocable step toward willing illness upon myself.

The Disordered Concept of Schizophrenia

 “Schizophrenia” has demonstrated itself to be a slippery entity since the term was first introduced by Bleuler over a century years ago [1]. Disagreements over the definition of schizophrenia relate to some of the most fundamental aspects of the concept, such as whether it should be viewed as a social or medical problem, beliefs about its prognostic outcome, and treatment approaches towards those who are suffering from the disorder [2, 3].

Many now argue that “schizophrenia”—as a single unitary condition—simply does not exist. Instead, there may be a group of loosely related conditions we might consider to be “schizophrenias” (as Bleuler had originally believed), or it may be the case that we have mistakenly combined what are actually independent conditions. More than ever, psychiatrists around the world are pressing for the reconceptualization and rebranding of schizophrenia as a coherent disease entity, given the ambiguity, stigma, and barriers to care associated with the current diagnosis. 

The Limitations of Biological Explanations

Image drawn by Anna Swartz

Modern scientific understandings frame schizophrenia as a grim “disorder of the brain”—primarily biological or genetic in nature—whose causes and treatments can be tracked and developed only through continuous “cutting-edge” research in neuroscience [4, 5]. This mainstream “precision medicine” narrative has manifested in an “illness like any other” approach [6] that treats mental disorders including schizophrenia as “brain diseases” or harmful deviations of “normal” bodily function no different in kind from those diseases we have already come to accept as exclusively physical.

Unfortunately, progress has with a dark side. In the case of schizophrenia, where stereotypes and misinformation abide, ascendant neurobiological explanations—widely embraced as the antidote to stigma and harmful misinformation—are themselves attributing to negative perceptions towards those who experience this illness. Unfortunately, the consequences of these perceptions extend beyond stigma and stereotypes; they also vex and complicate treatment, contributing to low recovery rates and a frightening death toll. 

It is a banal but important point that how we conceive of a problem largely determines how we respond to it. There is nothing inherently wrong with arguing schizophrenia in and through the brain. The problem comes when an explanatory model holds to simplistic, totalizing, and often damaging theories of schizophrenia as pathological: an objective and locatable disease of the brain, amputated from the person to whom that brain belongs, that is committed to medical interventions that treat symptoms as meaningless, unrelated to life histories. 

Listening to the Voices of Others 

Image drawn by Anna Swartz

In biological psychiatry, the experience of schizophrenia, as told by the individual living under the diagnosis, are drowned out by the voices of outside experts (psychiatrists, clinicians, scientists, researchers), who are acknowledged as more reliable and authentic in their capacity as knowers and contributors to the epistemic effort to reach a correct diagnosis and treatment [7, 10]. First-person symptom testimonies are virtually non-existent in academic journals, professional reports, and clinical practice [8]. Patients are simultaneously locked into and out of the research and practices that involve and affect them most directly, based on a prevailing clinical stereotype that undermines their capacity to provide truthful and reliable accounts of their own lives [9, 10]. This is a form of epistemic injustice [11, 10]. 

Kristie Dotson identifies two forms of epistemic injustice that are relevant to patients with schizophrenia. These include “testimonial quieting” which happens when a speaker from a marginalized group is not seen as a “knower” which results in the subsequent dismissal of their testimony by the dominant group; and “testimonial smothering,” which happens when a speaker believes their testimony will be misinterpreted so they self-silence (see [12] page 242). 

This silence also attests to the stigmatized nature of psychotic experiences. Such stigma and stereotypes are problematic for many reasons, beyond their empirical inadequacy. They encourage unwarranted attitudes of suspicion and distrust towards people with schizophrenia, which, in turn, contribute to our social isolation; this is in itself epistemically impairing. Each reinforce the other. 

How clinicians listen—or don’t listen—to patients’ voices has profound implications for patients’ therapeutic recovery. The ability to claim and articulate one’s unique experience is a core feature of being human, and when access to treatment and support are restricted to the narrow, operational, and sometimes dehumanizing “common” language of biological psychiatry, the result is a loss of its healing power. Reducing the rich texture of madness to a series of vaguely understood biogenetic mechanisms becomes a project in self-alienation that is antithetical to recovery and the very goals of psychiatry. 

Recovering Ourselves Through Narrative

Image drawn by Anna Swartz

Researchers have acknowledged that to understand and promote recovery from serious mental illness, we must study the subjective experiences and personal perspectives of individuals who are recovering from and coping with mental health problems [13, 14]. Recovery can be defined in many ways and may hold different meanings for different people. In psychiatric terms, recovery is often defined as the treatment or abolition of symptoms. But many patients do not define the return to a previous “normal” state through cure and treatment in order to pursue their lives in the community alongside everyone else. Instead, they want the capacity to make their own decisions, follow their own dreams, and otherwise have a meaningful, productive, and fulfilling life, as they are [13].

In a qualitative study of more than 100 people with different experiences of schizophrenia, variable in intensity and duration, Larry Davidson observed that these individuals narrated a loss of self and a social abandonment as the most distressing features of their illness [14]. Recovery or the fundamental turning point in their illness that enabled them to experience themselves in the world in meaningful ways was voiced as a need for belonging and acceptance by at least one person who could be counted on to support and stand by them during all parts of their illness [14]. Thus, the rebuilding of broken identities is inextricably linked to an engagement with the social and destigmatization.  

A Way Forward: Understanding Rather Than Etiology

Image drawn by Anna Swartz

What practical lessons can be learned here? What are the ethical and pragmatic conclusions we can draw about the care of people with schizophrenia and disorders alike? The most important point I can make is that schizophrenia involves a fundamental change to not only a person’s interpretation of the world, but also their very sense of self. This fusion of diagnosis with identity is why Sue Estroff calls schizophrenia an “I am” illness, more in the company of conditions like epilepsy and alcoholism, as opposed to an “I have” illness, such as cancer or heart disease (see [15] page 189). In other words, schizophrenia is not an “illness like any other” because the content of delusions and hallucinations are susceptible to sociocultural pressures in ways that arteries and cancer cells are not [16]. What our confused and delusional minds think is not beside the point, because it is the point.

An ethical approach to understanding and treating schizophrenia must be responsible not only to the needs of science but also to the many consistencies, including patients affected by it. It must recognize that all ways of narrativizing an illness from the outside are only ever partial explanations. It is often forgotten that the experience of schizophrenia in the first-person is itself a privileged type of expertise different than any kind one is able to obtain in medical school, the clinic, or the lab. Therefore, any improvement in accuracy with respect to elucidating the precise cause and approach to treating and preventing schizophrenia of necessity demands the participation of patients’ voices and agencies at every step, since these individuals have the unique and individual knowledge of what schizophrenia “is” from the inside. This will ensure a richer and more accurate understanding and will benefit efforts to provide the best support for people living with this diagnosis. I would suggest that good place to start would be for neuroscience and psychiatry to supplement questions such as “where is the pathology” with “how can I help.”

Anna K. Swartz is currently taking graduate classes and applying to PhD programs. She earned a BA in anthropology from Wellesley College and a MS in Rhetoric, Theory and Culture from Michigan Technological University. The focus of her work in neuroethics has been on the brain disease model of mental disorders and how over-reliance on this paradigm might contribute to the stigmatization and marginalization of people with mental illness. She is especially interested in the development of classification systems for mental disorders, with special attention to schizophrenia.