First Person Accounts of Mental Illness and Recovery

Craig W. LeCroy, Jane Holschuh, Craig W. LeCroy, Jane Holschuh

• Publisher: Wiley
• Year: 2012
• ISBN:
  9781118233931
• Edition: 1
• Topic: Psychologie
• Subtopic: Psychopathologie

In First Person Accounts of Mental Illness, case studies of individuals experiencing schizophrenia, mood disorders, anxiety disorders, personality disorders, substance use disorders, and other mental ailments will be provided for students studying the classification and treatment of psychopathology. All of the cases are written from the perspective of the mentally ill individual, providing readers with a unique perspective of the experience of living with a mental disorder.

"In their book First Person Accounts of Mental Illness and Recovery, LeCroy and Holschuh offer the student, researcher, or layperson the intimate voice of mental illness from the inside. First Person Accounts of Mental Illness and Recovery is a wonderful book, and it is an ideal, even indispensable, companion to traditional mental health texts. I am grateful that they have given the majority of this book to the voices that are too often unheard."
—John S. Brekke, PhD, Frances G. Larson Professor of Social Work Research, School of Social Work, University of Southern California; Fellow, American Academy of Social Work and Social Welfare

"This is absolutely a must-read for anyone who has been touched by someone with a mental illness, whether it be personal or professional. It is imperative that this book be required reading in any course dealing with psychopathology and the DSM, whether it be in psychology, psychiatry, social work, nursing, or counseling."
—Phyllis Solomon, PhD, Professor in the School of Social Policy & Practice and Professor of Social Work in Psychiatry at the University of Pennsylvania

A unique volume of first person narratives written from the perspective of individuals with a mental illness

Drawing from a broad range of sources, including narratives written expressly for this book, self-published accounts, and excerpts from previously published memoirs, this distinctive set of personal stories covers and illustrates a wide spectrum of mental disorder categories, including:

• Schizophrenia and other psychotic disorders
• Mood disorders
• Anxiety disorders
• Personality disorders
• Substance-related disorders
• Eating disorders
• Impulse control disorders
• Cognitive disorders
• Somatoform disorders
• Dissociative disorders
• Gender identity disorders
• Sleep disorders
• Disorders usually first diagnosed in infancy, childhood, or adolescence

Reflecting a recovery orientation and strengths-based approach, the authentic and relevant stories in First Person Accounts of Mental Illness and Recovery promote a greater appreciation for the individual's role in treatment and an expansion of hope and recovery.

1

Schizophrenia and Other Psychotic Disorders

INTRODUCTION

We begin this book with the first person accounts (FPAs) written by people who have been diagnosed with or have experienced the symptoms of a psychotic disorder. The Diagnostic and Statistical Manual of Mental Disorders, 4th edition, text revision (DSM-IV-TR) groups together under this category disorders that involve a variety of serious symptoms that have considerable impact on people’s daily lives. Of these disorders, schizophrenia is the prototype. Earlier versions of the DSM took a unitary approach that conceptualized psychopathology on a continuum; neurosis reflected a higher level of functioning and psychosis signified the greatest impairment in functioning. Arieti’s (1974) concept of a “break with reality” defined psychosis more narrowly and is why the first signs/symptoms or episode of schizophrenia has been termed a first break. Psychosis represented an inability to distinguish between internal and external stimuli. The break with reality referred to this loss of ability to reality test, or to tell whether, for example, the voices a person hears are real and are being heard by others or not. This way of thinking about psychosis has endured. In neurotic disorders as defined by the first two DSMs, this capacity remained intact. Beginning with DSM-III, the manual abandoned the unitary approach and, instead, defined psychopathology as discrete or distinct categories of disorders and developed a core set of criteria for each disorder.

People who have been diagnosed with any of the psychotic disorders may experience problems in perception (hallucinations in any of the five sensory areas, but most often auditory or visual hallucinations), delusions or false beliefs, disorganized speech (and thought), and/or disorganized or catatonic behavior. While these psychotic symptoms are common across the disorders in this category, such symptoms are not thought of as the core parts of every disorder in this section, and there is variation in the symptoms that are considered psychotic for different disorders in this category. In schizophrenia, schizophreniform disorder, schizoaffective disorder, and brief psychotic disorder, the following are psychotic symptoms: delusions, any hallucinations (with or without accompanying insight) that are prominent, disorganized speech, and disorganized or catatonic behavior. In substance-induced psychotic disorder and psychotic disorder due to a general medical condition, only delusions and hallucinations with no insight are considered to be psychotic. In delusional disorder and shared psychotic disorder, the term psychotic is interchangeable with the term delusional.

It is important to note that some cognitive disorders, mood disorders, dissociative disorders, and substance withdrawal disorders may also involve more transient psychotic symptomatology. And, increasingly, there is no assumption of common etiology in the psychotic disorders. For example, current research posits that schizophrenia is thought to be etiologically more similar to schizotypal personality disorder than to the other psychotic disorders (Tsuang, 2002).

While certain symptoms were thought of as pathognomonic of schizophrenia in the past (e.g., Kurt Schneider’s first-rank symptoms of schizophrenia/1939), we now know that there is no one sign or symptom that defines or predicts the disorder. People with schizophrenia can experience a variety of cognitive and emotional difficulties that must, by definition, be related to social and/or occupational dysfunction. These include problems in perception, in communication and language, in the content and process of thought and speech, in attention, in volition and drive, in the ability to experience pleasure, in affect and mood, behavior, and inferential thinking. Symptoms of schizophrenia are classified as either positive or negative. Positive symptoms represent an exaggeration or distortion of normal functions (e.g., delusions and hallucinations). Negative symptoms involve a reduction in or loss of normal functions (e.g., affective flattening and avolition).

The subjective experience of signs and symptoms has been viewed as especially critical to an understanding of schizophrenia (Estroff, 1989; Strauss, 1989). Schizophrenia Bulletin dedicated an entire issue to this topic (Strauss & Estroff, 1989). Viewing the illness through the eyes of those who have been diagnosed with it has contributed to a renewed focus on designing psychosocial treatment and services that will be more responsive to consumers’ needs, reduce stigma, and enhance their quality of life. Honoring the subjective experiences of those with schizophrenia (or any mental disorder) requires us to shift perspectives from thinking of ourselves as the experts to viewing those who experience symptoms of mental illness as experts in their own right. We can learn a great deal about the challenging aspects of their experiences from listening to their stories. Perhaps more important, we also learn about courage, persistence, and the strength to endure and even triumph.

The FPAs in this chapter describe individuals’ experiences with schizophrenia and with schizoaffective disorder in which there is an added mood component. People who meet criteria for schizoaffective disorder must first meet the symptoms criterion for schizophrenia (Criterion A), and then also meet criteria for a major mood episode (depressive, manic, or mixed) during a significant period of the course of the illness. For individuals who meet criteria for any of the psychotic disorders, the personal experience of signs/symptoms can and does vary greatly. These can be frightening and disabling, especially initially. Probably no two people with a diagnosis of schizophrenia have identical symptoms or the exact same course or trajectory of the illness. The onset of schizophrenia most often occurs in late adolescence to mid-twenties (18–25) for men and from 25 to mid-30s for women. There is a bimodal distribution for women, with an additional peak of onset after 40. But the timing and process of onset varies across individuals, too. The onset for schizoaffective disorder occurs typically in early adulthood, although it can range from adolescence to much later in life. Women have a higher incidence of schizoaffective disorder than men and more often experience the depressive than the bipolar type.

As you read the FPAs in this chapter, we think you will be struck by the contrast between the DSM ’s portrayal of these disorders and the subjective, personal experience of living with schizophrenia or schizoaffective disorder that our authors provide. In focusing solely on the symptoms and the DSM diagnostic criteria as we have done as background in this introduction, we risk coming away with a limited understanding of these problems. We have found that by “listening” to what the personal narratives in this chapter tell us about the lived experience of psychotic disorders, our understanding is broadened and greatly enriched.

Susan Salsman wrote the FPA that begins this chapter. Her life with schizophrenia changed greatly when someone else with mental illness identified with her and said, “Yeah, that happened to me too.” In the next selection, Paolo Scotti describes his experience of having schizophrenia and talks about his recovery as a process of “discovery.” Leslie Greenblat’s account of hearing voices reveals not only the challenges she has faced but also the resourcefulness she has shown in developing a strategy to cope with them and move on with her life. Benjamin Gray draws on what he experienced during a 12-month involuntary hospitalization for schizophrenia to critique services based on a medical model. He advocates for patients’ rights, discusses the rise of democratic psychiatry, and tells the reader about several alternative approaches such as the hearing voices movement. In an account of how she uses her own experience of schizophrenia and her recovery to work with others, Corinna West discusses her role as a peer specialist in helping those who are struggling with the illness.

Kristen Fowler’s moving story of her “first symptoms of psychosis” portrays how her illness changed from serious depression to include symptoms of psychosis that eventually were diagnosed as schizoaffective disorder. She describes this process as a descent into suicidality and psychosis. The final FPA in this chapter, written by an anonymous author, highlights the differences in having and receiving treatment for a mental illness versus a physical illness. The author makes her point by comparing her experiences of having schizoaffective disorder to the experiences that someone with diabetes might have.

QUESTIONS FOR REFLECTION

What are some common strategies that these authors have used to cope with having a psychotic disorder? What strengths have they revealed in dealing with the symptoms and other challenges they experienced? Do these accounts fit your stereotype of people with schizophrenia or schizoaffective disorder? Why or why not?

REFERENCES

Arieti, S. (1974). Interpretation of schizophrenia (2nd ed.). New York, NY: Basic Books.

Estroff, S. E. (1989). Self, identity, and subjective experiences of schizophrenia: In search of the subject. Schizophrenia Bulletin, 15(2), 189–196.

Strauss, J. (1989). Subjective experiences of schizophrenia: Toward a new dynamic psychiatry—II. Schizophrenia Bulletin, 15(2), 179–187.

Strauss, J., & Estroff, S. E. (1989). Subjective experiences of schizophrenia and related disorders: Implications for understanding and treatment. Schizophrenia Bulletin, 15(2), 177–178.

Tsuang, M. T. (2002). Schizotaxia and the prevention of schizophrenia. In J. E. Helzer & J. J. Hudzial (Eds.), Defining psychopathology in the 2lst century: DSM-V and beyond (pp. 249–260). Washington, DC: American Psychiatric Publishing.

SCHIZOPHRENIA

The Best Medicine

SUSAN A. SALSMAN1

Wouldn’t it be great if all mental health professionals were required to have a mental illness? I’m just talking about those who want to deal with people who have been diagnosed with a mental illness. If a professional wanted to work with neurotics then, no requirements necessary, because all people have neuroses! I think that’s an inborn trait. But to help the mentally ill, you must be mentally ill.

I have lived with schizophrenia since about age 15. I knew there was something wrong, so I sought help. I saw school counselors and even went to see a psychologist a few times. Had I kept going to him, I might have learned early on that I had a mental illness. I found out many years later, after my hospitalization and diagnosis, after many years of seeking counsel from this doctor or that, or this counselor or that, that that early psychologist had suspected psychosis.

I wonder sometimes if I would have been better off if I had caught it early. But I’m okay with the fact that I didn’t, because life is good. I am who I want to be today. I probably couldn’t get any closer to being normal than I am right now. I’m not 100 percent and it’s not perfect. But will it ever be for anyone? Everyone has something to deal with at some time. Mine just happens to be schizophrenia.

I can’t count the number of mental health professionals I have seen in my search for answers. I just know that there have been many. All of them were unique individuals, all of them were well educated, and all of them, I hoped, had the best reason for choosing the profession they did: to help people. I understand that that may not always have been the case, but the majority of them surely meant well, and I appreciate that.

I hopped from one mental health professional to the next, getting fixed up a little only to fall back into madness and return once again to a little office with a big desk and a new face. I would sit in desperation, longing to find the answers, longing for something to hold onto that would take away all of my pain. I was hoping to learn how to live, how to cope. I always wanted to be told what to do and how to do it.

After I realized that this would never happen, the mental health professionals just became sounding boards. If I babbled on enough, if I cried enough and complained enough, it would release some of the tension—at least for a while. And that’s all I could do because I knew then that nothing they said or did would ever help me beyond the little hour we shared—that little hour filled with hopelessness and good intentions.

Finally I was hospitalized in 1989 at the age of 24 and came to some important realizations. First, something was seriously wrong in my head. Second, medication could help to take away some of that craziness. And third, I was not alone.

Realizing that I was not alone was a revelation. To this day I hear that one sentence in my head spoken from a beautiful person sitting next to me who came from some other place, whose life I knew nothing about—a complete stranger whose face I caught only intermittent glimpses of as I faded in and out of reality the first few days. Seeing her clearly now, this perfect, beautiful stranger said to me, “Yeah, that happened to me too.”

The medicine helped, I became friends with a staff member, and I started to enjoy a little sanity for the first time in months. But nothing in that hospital experience mattered more than what happened in that one little fragment of time. And I still find it humorous how it was said so nonchalantly and almost matter-of-factly, in a manner that one could have as easily said, “Your hair is red.”

I don’t know this girl’s name. I wouldn’t recognize her if I saw her on the street. I don’t know who she is or where she came from or where she is now. But a part of her lives in me just as strongly today as it did in the moment we first spoke.

I have shelled out a lot of money over the years. All the time and effort I put into my career as a patient, all the hard work and sweat these people poured out to me from behind their tidy desks, all the little hopes and twists of starlight fading into dawn, left me disillusioned by the realization that in order for healing to begin, we need only to hold in our hearts the love, understanding, and compassion of a fellow sufferer.

I can tell a mental health professional what I am experiencing: how it feels, my perception of it. I can describe hallucinations, pouring out expressions like water. I can be as eloquent as possible, laying open my soul. I can take the time t...