Faith Forgione, a student at Fordham University, NY, recently published part of a larger study that examined the lived experiences of individuals who have received a psychiatric diagnosis that they felt to be inaccurate and invalidating. This project, guided by Dr. Marcotte, Dr. Kamens, and Dr. Wertz, among others, gives voice to an underreported phenomenon and asks: “How do individuals diagnosed with psychotic disorders experience perceived misdiagnosis?”
“Because of this parallel between these participants and psychiatric survivors, the present study augments the growing body of literature on the experiences of perceived psychiatric mistreatment and will hopefully serve as a resource to enhance discussions among psychiatric survivors, current service users, and clinicians regarding stigma,” Forgione writes.
Disagreeing with one’s psychiatric diagnosis is not uncommon, particularly for those given a diagnosis of schizophrenia. It is important, Forgione argues, to examine the ramifications of receiving a diagnostic label for these individuals. While for some a diagnosis can provide a framework to understand their distress, others experience invalidation, trivialization, and frustration, particularly when the diagnosis lacks adequate explanation or justification by providers. This can result in deleterious social and psychological effects. For example, when a diagnosis results in greater dehumanization and social distancing it can increase one’s negative affect and distress rather than ameliorating it.
The potential for a psychotic disorder diagnosis to worsen distress is supported by studies that examine the beliefs of friends, family members, and providers. Individuals diagnosed with psychotic disorders are believed to be less capable of making decisions, “unpredictable,” “hard to talk to,” and “dangerous.” These beliefs are endorsed by the general public as well as by people close to those who received the diagnosis.
Forgione points out that these beliefs make mental health providers more likely to support involuntary hospitalization for those diagnosed. All of these misconceptions seem to work alongside worsening social stigma that parallels a medicalized narrative of distress:
“A recent meta-analysis found that although the public has become more likely to endorse biomedical origins of mental illness rather than personal moral failings, stigmatizing attitudes toward schizophrenia appear to have increased in the decade between 1996 and 2006,” writes Forgione.
It may come as no surprise then that those individuals who receive a psychotic disorder diagnosis are susceptible to engaging in negative self-evaluation and may come to see “psychosis” as a main part of their identity. Forgione cites a former service-user who published their experience of psychiatric hospitalization. They wrote:
“I entered the hospital as Robert Bjorklund, an individual, but left the hospital 3 weeks later as a ‘schizophrenic.”
What happens when service users and advocates speak out against diagnostic labels and the medical model? In psychological research, efforts to highlight the perspectives of service-users have been largely ignored. Nevertheless, many argue for a system that promotes partnership and empowerment over condescension and paternalized control. Practices, such as forced medication, are understood by some service users to be coercive, abusive, and inhumane. Service users and advocates seek to reconceptualize “symptoms” pathologized by psychiatric labels as strengths or gifts to mitigate the harmful impact that top-down diagnosis may have on one’s distress, social/work life, and self-image.
“Ultimately, these advocates believe that clinicians should honor the individual choice and needs of service users,” Forgione writes, “including the choice to avoid diagnoses and treatment entirely—rather than establish a hierarchal relationshipthat limits choice and agency.”
Forgione continues to deconstruct terms commonly used to describe patients’ condition such as “poor insight” or “identity disturbance.” Past research (see Campbell, 1996) has found that the concept of poor insight, for example, is “profoundly disempowering, especially when ‘insight’ means agreeing that you are suffering from schizophrenia.” Moreover, the author draws from research suggesting that working within a service user’s explanatory model is a better predictor of successful treatment whereas attempts to superimpose Western, medical explanations of distress can be detrimental.
In this qualitative study, Forgione seeks to better understand the experience that individuals have when they dissent with their psychotic disorder diagnosis. As part of a larger study, Forgione interviewed three participants. The aim of this study was not to encapsulate the diversity of experiences or attempt to generalize these specific narratives, as it was not a quantitative investigation. Instead, these perspectives offer the perspectives of individuals who had high levels of dissent, and who may not have had experiences that fit the label of “psychosis.”
“While there is plentiful research literature investigating the reliability and validity of diagnostic constructs, few studies have examined the lived experiences of persons who, in the words of Martin (2007), are ‘living under the Description’ (p. 8) of a psychiatric disorder that they do not believe they have,” Forgione writes.
Participants (referred to by pseudonyms) were Olufemi, a 28-year-old African male diagnosed with chronic paranoid schizophrenia; Paula, a 58-year-old African female diagnosed with schizoaffective disorder; and Oliver, a 31-year-old Australian male who had previously been diagnosed with drug psychosis. Oliver’s diagnostic details were provided through self-report as he was formerly hospitalized. Both Oliver and Olufemi migrated to the US from their home countries. Paula and Olufemi were hospitalized during the time of the interviews and their diagnoses were derived from medical records.
Phenomenological analysis, guided by the procedures of Giorgi and Wertz, were used to better understand the subjective complexities of the experience of misdiagnosis. The three participants in this study went through an experiential process of reclaiming their agency in the face of a psychotic disorder diagnosis they believed was inaccurate and invalidating. The researcher encapsulated this experience under the term “diagnostic dissent.”
“Diagnostic dissent” was seen as the core psychological structure making up the experience of perceived misdiagnosis. This was broken down into three parts: (1) “the clinician’s loss of legitimacy,” (2) “privileging self-experiences,” and (3) “psychosocial consequences of diagnostic labeling and stigma.”
The researchers also examined how experiences may have varied throughout this process. For example, before experiencing dissent about their diagnoses, one may go into treatment expecting “adequate professional intervention,” expecting “misdiagnosis and improper treatment,” or having “no expectation of professional intervention.”
The first part, “clinician’s loss of legitimacy” involves the erosion of the individual’s trust in the clinician’s psychiatric authority. Sometimes, this was prompted by feeling as though assessment was not adequate, such as through Paula’s experience:
“I just had a brief hallway, two-minute interview with the doctor . . . she just asked me two or three questions. . . . Nobody’s ever spent time with me to know exactly what is wrong with me.”
Olufemi felt that his assessment was driven by the ulterior motives of the correctional officers at the prison who claimed he “heard voices” in order to legitimize the “increased surveillance and transfer of incarcerated individuals.”
In the wake of this loss of legitimacy, participants began to privilege their own experiences and draw on their personal history. Paula, for example, spoke confidently about her self-knowledge, an experience that she believed to be tied into her history as a trauma victim: “I know what I have, because I have it,” she stated in the interview. Paula rejected the diagnostic label. Oliver, who believed the label did not fit, requested a reevaluation but that request was dismissed by psychiatrists who told him: “You don’t know what you’re talking about.”
Part of these three narratives featured the experience of “psychosocial consequences of diagnostic labeling and stigma” which participants viewed as a contributing factor to their experiences of damaged relationships and distancing from friends and family.
“The persons experiencing diagnostic dissent believe that their psychotic disorder diagnosis carries social stigma that causes others, including their clinicians, to view them as too incompetent or unaware to manage themselves,” Forgione writes.
In her interview, Paula recounted a harrowing experience of being beaten during a psychiatric evaluation, despite her physical disabilities:
“[They beat me] right in front of a psychiatrist. She didn’t flinch. She was interviewing me . . . she was giving me an evaluation. I had just been brought to the hospital by them, and he . . . body slammed me to the ground. I was in a straitjacket, from my head to my toes and I have a hip replacement. And . . . I was lying on the ground and the psychiatrist didn’t flinch. She continued her psychiatric interview. They strapped me in the bench. . . . The guy picked me up off the floor and shoved me into the bench. . . . She didn’t react and she committed me. [She] said nothing to the policeman . . . I don’t know what it is they see in my records . . . I have no violence. I’ve never been violent.”
After experiencing diagnostic dissent, the researchers identified two variations in experience: (1) Forgiving the invalidating other(s), and (2) Not forgiving the invalidating other(s). For Oliver, eventually finding a clinician whom he felt made him comfortable and understood him enabled him to “move past feelings of invalidation,” according to Forgione. However, in other cases, those dissenting may not forgive the invalidating other(s) for the harm they inflicted.
Phenomenological analysis allows for uan nderstanding of variations in these experiences, such as those personal accounts in which one believes an otherwise competent doctor may have failed to accurately evaluate their experience. Other such variations are considered in Forgione’s paper. These findings illustrate how the act of refusing a diagnosis can, in and of itself, work to counter perceived invalidation and restore agency. Forgione summarizes these points:
“The very act of this refusal has the consequence of validating one’s self-experience and autonomy in the face of the perceived invalidation. Diagnostic dissent can also be a means by which individuals retain experiential sovereignty over their selfhood, even if others have otherwise assumed control of their corporality through institutionalization or coercive treatments. Through diagnostic dissent, individuals assert their self-experience in contrast to what they believe is an erroneous label, an act that ultimately reaffirms their sense of personal agency.”
Forgione recommends a number of opportunities for future research to continue to highlight first person accounts. Despite the limitations of this study, the lived experiences of these participants are consistent with the growing body of literature on the potential psychosocial harms of psychiatric diagnosis.
Forgione also provides some take-away points for clinicians to consider in their work. Person-centered approaches that involve working with openness, respect, and desire for partnership show more promise. Central to this idea is the privileging of the individual’s framework and understanding of their experience with an aim to work within that understanding rather than paternalistically imposing the views of psychiatry.
Forgione, F. A. (2018). Diagnostic Dissent: Experiences of Perceived Misdiagnosis and Stigma in Persons Diagnosed With Schizophrenia. Journal of Humanistic Psychology, 0022167818777151. (Link)
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.