Schizophrenia and Recovery: Diagnosed Professionals Speak Out

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Diagnosed professionals...

Implications for and Involvement of Schizophrenia Professionals

... Reflecting on the impact of the recovery concept, and considering how important the consumer perspective has been in its development, what are some major messages for those referred to by Jacobson as the ‘‘elite professionals,’’ working in the area of schizophrenia? How does one accommodate the predominantly subjective and politically oriented recovery model into the objective, scientific approach of professionals working in the field of schizophrenia?

One avenue to explore in answering this question could be the realization that some of these so-called professional elites are themselves persons who have been diagnosed with and treated for schizophrenia. Because of the obvious downside consequences of revealing that one has a personal history with schizophrenia, it is likely that most professionals in this category are unlikely to publicly identify themselves, particularly those younger professionals, for whom such revelations could be career damaging.

However, during the past few decades, there have been a number of highly trained professionals who, for various reasons, have been willing to be open and even publish materials related to their conditions and the process of their recoveries.

Indeed, it turns out that many of those who were lending their voices to those of the rising consumer advocacy movement were persons who, despite having been diagnosed with, and undergone treatment for, schizophrenia or schizoaffective disorder, eventually were able to attain sufficient appropriate education to become certified in the mental health field and work as professionals.

Many of these persons in recovery became nurses, social workers, occupational therapists, and other mental health professionals. Some had even been able to complete doctoral level training and function as psychiatrists, psychologists, or other professionals in the field. This latter category includes the following...

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Psychiatrists

Carol North, MD, was one of the earlier psychiatrists to self-identify as having been diagnosed with and treated for schizophrenia. Her book, Welcome Silence: My Triumph over Schizophrenia, details her experiences as a young person diagnosed with schizophrenia and having the delusions and other symptoms associated with the condition.

In her book, North relates her experience of recovery, but she attributes her recovery primarily to dialysis. However, she goes on to explain that research has failed to show that dialysis is a remedy for schizophrenia despite her experience with this procedure. North is particularly sensitive to the stigma accompanying serious mental illness.

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Psychiatrists...

Dan Fisher, PhD, MD, was another early voice of a person who had been diagnosed with schizophrenia and began to stress the fact that recovery from schizophrenia was possible, if not likely. Fisher had been initially diagnosed with a schizophrenia while working as a research scientist in the 1960s. Despite this diagnosis and multiple hospitalizations for this condition, Dan was able to earn a second doctorate, this one in medicine, and went on to complete a psychiatric residency at Harvard University.

Although Fisher only gradually disclosed his history of being treated and diagnosed with schizophrenia,he later became one of the appointed commissioners on the President’s NFC on Mental Health, where his voice was influential in forging the major recommendation of the Commission. That recommendation was that the mental health system in the Untied States be transformed in such a manner that the major goal for the transformed system would become ‘‘recovery’’ for persons with serious mental illnesses.

Further details concerning Fisher’s advocacy activities can be found at www.power2u.org.

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Psychiatrists...

Elizabeth Baxter, MD, is a psychiatrist who identifies herself as being diagnosed with schizoaffective disorder. Baxter relates that she has been hospitalized several times for her psychiatric condition, twice toward the end of her psychiatric residency training. She relates that at one time her doctors indicated that the most she ‘‘would ever recover would be the ability to put objects into boxes on an assembly line.’’

She refers to ‘‘my recovery’’ and ‘‘bright recovery’’ and attributes her recovery to her persistence, the encouragement of friends, family and caregivers, and spiritual growth.

Although Baxter has published and given numerous presentations discussing her personal experiences with psychosis, in consumer circles she is well known as the cocreator, with Sita Diehl, of BRIDGES: A Peer Education Program.

BRIDGES, an acronym for, Building Recovery of Individual Dreams and Goals through Education and Support, is a structured peer education program based on the belief that those with mental illness ‘‘can and do recover a new and valued sense of self and purpose.’’ BRIDGES was designed with input from over 100 persons in recovery and is facilitated by and offered to persons recovering from mental illness throughout the country.

BRIDGES draws heavily both from Diagnostic and Statistical Manual of Mental Disorders and other scientifically oriented descriptions of serious mental disorders and from writings of other persons in recovery. The program not only focuses on identifying traditional and other symptoms of mental illness but also embodies personal and advocacy perspectives.

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Psychologists...

Patricia Deegan, PhD, a psychologist, is another of the early voices to describe her experiences in overcoming schizophrenia. Deegan had been diagnosed with schizophrenia as a teenager, spent considerable time hospitalized in a state psychiatric facility, but was nevertheless able to continue her education, eventually earning a doctorate in psychology from Duquesne University.

Of all the persons in recovery who have gone on to become fairly highly educated mental health providers, Patricia Deegan was one of the most effectively articulate. Deegan stressed that those of us in recovery faced a society in which discrimination, stigma, and disrespect were far too common.

In a series of published articles, Deegan began to call for a very different focus regarding the concept of recovery from serious mental illness. Deegan’s writings stressed that persons in recovery are not passive recipients of rehabilitation services. In her words that recovery refers to a‘‘self pole’’ as opposed to the ‘‘world pole’’ of traditional rehabilitation approaches.

She describes her experience of psychiatric treatment as one of dehumanization and depersonalization, spirit breaking, learned helplessness, and of having to overcome humiliating experiences. Deegan stresses the importance of reclaiming and recovering a sense of self after being devalued, dehumanized, and degraded. She emphasizes that every journey is unique and that the task is not to become normal but to become who you are and who you are called to be. She also repeatedly calls for social justice and civil rights for persons with psychiatric disabilities.

Recently, Deegan has begun calling for more of a partnership model in the delivery of mental health treatment, with the partners being the practitioner and the client. She refers to this approach as a ‘‘shared decision making’’ process. For further information concerning the development of Deegan’s views and activities, see www.patdeegan.com.

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Psychologists...

Frederick J. Freese, PhD, the current senior author, is a psychologist who has been open and public about his being hospitalized numerous times for schizophrenia, since making a presentation about his condition at the Annual Convention of the American Psychological Association.

Since becoming open about his condition, he has published works on schizophrenia advocacy, coping skills, recovery, and treatment. F.J.F. argues that recovering persons should work cooperatively with providers so that the mental health delivery system treats the mentally ill more effectively but with increased dignity and respect.

In the early 1990s F.J.F. served as president of the National Mental Health Consumers’ Association. Also in the capacity of an advocate, F.J.F. has served on the boards of several national professional and advocacy organizations, including the National Alliance on Mental Illness (NAMI), the National Industries for the Severely Handicapped (NISH), the Treatment Advocacy Center, and the American Occupational Therapy Association, as well as serving on national committees for both the American Psychiatric Association and the American Psychology Association.

During the past few years, he has been serving as a contributor to the Measurement and Treatment Research to Improve Cognition in schizophrenia (MATRICS) initiative. For more information about activities of F.J.F., see www.fredfrese.com.

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Psychologists...

Ron Bassman, PhD, was initially diagnosed with schizophrenia at age 22. He spent 2 extended periods, of 6 and 7 months, in private and public psychiatric hospitals, respectively, as an inpatient being treated for his condition. Nevertheless, Bassman went on to earn a doctorate in clinical psychology and later obtained a position with the New York State Office of Mental Health, where he participated in the development and implementation of a training module for psychiatric staff that emphasized key recovery themes such as hope, self-help, empowerment, mutual support, and respectful communication. Bassman also served a term as president of the National Association for Rights Protection and Advocacy.

In his writings, Bassman consistently refers to the iatrogenic effects of hospital treatment, the damage of having a psychiatric label, and the crushed dreams and stigma as being possibly more difficult to overcome than the original condition, itself. He lists hope, safe niches, natural supports, reconciliation with family, absence of damaging treatment, belief in himself, successful experiences,meaningful work, psychotherapy, intimate relationships, and the passage of time as significant factors moving one toward recovery. For additional information concerning Bassman’s views and activities, see www.ronaldbassman.com.

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Psychologists...

Al Siebert, PhD, indicates that he was the first clinical psychology doctoral graduate from the University of Michigan to be selected for a postdoctoral fellowship at the Menninger Clinic, then located in Topeka, Kansas. Not long after arriving there, however, he was hospitalized in the nearby VA hospital and given the diagnosis ‘‘schizophrenic reaction, paranoid type, acute.’’

He relates how he was kept in a back ward for about 4 weeks, after which he left ‘‘against medical advice.’’ Interestingly, Siebert characterizes this experience as a months-long transformational experience that was the best thing that ever happened to him. In Siebert’s view, ‘‘from 20 percent to 30 percent of the people who go through a ‘schizophrenic’ period fully and completely recover from the condition and can do so with no medications.’’

More information about Siebert’s views and advocacy activities can be found at www.successfulschizophrenia.org.

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Other Professional Voices...

In addition to the psychologists and psychiatrists who have been open and active in helping in the development of the recovery approach to treating their conditions, 3 other doctoral level professionals, who are not specifically certified as psychiatrists or psychologists, but who themselves have schizophrenia, have been active in the mental illness / schizophrenia arena, advocating for recovering persons by publishing and making presentations about their conditions.

Ed L. Knight PhD (sociology), the current second author, indicates that he was first diagnosed with schizophrenia in 1969. Since then, he has been hospitalized at least 14 or 15 times, in addition to having spent some time being homeless. E.L.K. readily acknowledges that he takes medication for his condition. Indeed, he states that without the combination of meditation and medication he would be in and out of the hospital very frequently.

E.L.K. believes medications need to be separated from other aspects of the medical model that create helplessness. He believes symptoms are not written in stone, but the individual can learn to work with them and alter them in positive directions. Anxiety, e.g., can be, as Kierkegaard pointed out, a spiritual teacher of letting go of concepts and notions that limit the openness of the present. He says that it has now been over 25 years since the pivotal point that started his recovery by introducing him to a spiritual practice that empowers him to face his difficulties.

He has taken medications for schizophrenia for 27 years without interruption. He has also been diagnosed with depression, anxiety disorders, and mania but currently manages these conditions successfully without meds. Meditation helps him maintain balance and lower stress levels in his busy schedule. He practices zazen and centering prayer. Without meditation and prayer regularly, he may get overstressed and develop prodromal symptoms. He keeps them from returning by focusing and letting go of thoughts, ideas, concepts, and images.

For ‘‘religiosity’’ or anxiety, e.g., he focuses on the breath and as Dogen, the founder of Japanese Soto Zen, says ‘‘Thinks not thinking.’’ That is, he lets go of thoughts. This is similar to the recent development of Acceptance and Commitment Therapy of letting go of ‘‘mental boxes.’’ When he experiences the prodromal symptoms of mania, such as talking fast or racing thoughts, he mindfully walks slowly and deliberately while letting go of thoughts. As with everything, these states of prodromal symptoms pass. They do not worsen or return unless ignored. He has not been hospitalized in 25 years.

Doctor E.L.K. is currently vice president for Recovery, Rehabilitation and Mutual Support for Value Options, the second largest behavioral managed care company in the United States. He is also involved in research, having worked with several research centers: University of California, Los Angeles; Boston University; Nathan Kline Institute in upstate New York; and National Research and Development Institutes in New York City. His areas of research interest are mutual support, recovery, rehabilitation, and co-occurring substance abuse and mental illness. For further information about mental health activities of E.L.K., go to www.professored.com.

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Other Professional Voices...

Elyn Saks, JD, the current third author, is associate dean and chaired professor of law, psychology, and psychiatry and the behavioral sciences at the University of Southern California Gould School of Law; Adjunct Professor of Psychiatry at the University of California, San Diego, School of Medicine; and Assistant Faculty, the New Center for Psychoanalysis. E.S. has written several books on mental illness and the law.

Several years after attaining tenure, E.S. produced a volume where she relates that she openly accepts that she has schizophrenia, from which she feels she will never fully recover and for which she willingly takes medication. (This was after many years of resisting the diagnosis and need for medication.)

Reflecting on some of the difficulties of her recovery experience, E.S. states that ‘‘Early on after being diagnosed as schizophrenic, I was given the prognosis: grave – the psychiatric equivalent of a death sentence, the assumption that I’d never live or work on my own.’’ However, she feels that the humanity and dignity of clients should be at the center of the mental health system and stresses that stigma is a major barrier for persons in recovery, seeing stigma against schizophrenia as perhaps the most profound of all stigmas.

E.S. and her colleagues are engaged in studying high functioning people with schizophrenia to see if it is possible to identify strategies they have developed to manage their symptoms, hoping such strategies might be both teachable and effective for others. Professor E.S. serves as a member of the Task Force on Serious Mental Illness and Serious Emotional Disturbance of the American Psychological Association and as a member of the Board for Mental Health Advocacy Services and the Bazelon Center for Mental Health Law.

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Other Professional Voices...

Robert Miller in 1961 started as a medical student at Oxford University. However, in 1967, he experienced a serious psychotic breakdown that put him out of action as far as developing any other career was concerned, for about 3 years. However, in 1973, he obtained his doctorate from Glasgow. After several periods of postdoctoral study at British universities, he emigrated to New Zealand in 1977 and obtained employment as a lecturer in the Department of Anatomy and Structural Biology, University of Otago.

Robert Miller has for many years tried to use his theoretical ideas about normal forebrain mechanisms to shed light on psychosis and the complex disorder called schizophrenia. As a result, he has written many articles on the theory of dopamine-mediated psychosis.

He is currently working on an overall theory of schizophrenia, entitled ‘‘A neurodynamic theory of schizophrenia and related disorders,’’ which he introduced at a recent scientific conference.

Since emigrating to New Zealand, Miller has worked in collaboration with the Schizophrenia Fellowship of New Zealand. He has written autobiographical accounts of his own illness, when he was a young man and also has produced an educational booklet on schizophrenia. He frequently participates in international conferences on schizophrenia research, and in 2007, he was given the ‘‘Officer of the New Zealand Order of Merit’’ award ‘‘for services to schizophrenia research.’’

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Differing perspectives...

This article of course could neither begin to examine the entire spectrum of consumer perspectives on recovery from schizophrenia nor does it purport to adequately portray the views of each of the professionals mentioned above. However, a cursory look at the selected published comments of these professionals does allow one to draw certain inferences about the impact of these public disclosures as well as about the perspectives of these professionals concerning their own recoveries from schizophrenia.

Unfortunately, there still continues to exist in professional circles questions concerning the possibility of recovery from schizophrenia and particularly pessimism as to the possibility of persons with schizophrenia successfully completing academic work at the doctoral level. So, the fact that these professionals have publicly identified themselves as having been diagnosed and in treatment for schizophrenia, but have nevertheless obtained doctorates and are performing as professionals in the mental health field, in and of itself, sends a strong message.

By being open about their psychiatric conditions, they are implicitly demonstrating that the diagnosis of schizophrenia no longer means that one will necessarily experience the lifetime cataclysmic consequences once assumed to accompany the disorder. Without necessarily being explicit about the issue, these professionals are establishing a significant functional measure of recovery. And clearly, the greater the number of persons, especially those in the mental health professions, who are willing to be open, and even public, about their conditions, the more normalized schizophrenia becomes. Such increasing numbers could be viewed as positive functional measure of increasing hope for others and for diminishing stigma.

Second, examination of the writings of these professionals reveals a rather wide divergence concerning their perspectives on their recoveries and on recovery in general. For example, Miller and F.J.F. see the biological correlates of schizophrenia as being important. Fisher, Bassman, and Siebert play down or even deny the importance of any biological considerations. E.S., Baxter, F.J.F., E.L.K., and Deegan clearly acknowledge that they have had to struggle with, and continue to experience, at least some of the classic symptoms of schizophrenia. Such symptoms include sometimes experiencing delusions and hallucinations, as well as apathy, avolution, and/or other negative symptoms. Others, such as North, Siebert, Fisher, and Bassman downplay or deny that they currently experience any symptomatology.

The latter 3 of these advocates tend to see the need to substantively change health-care and societal conditions, in general, as their primary concern. Indeed, Fisher and Siebert contend that persons diagnosed with schizophrenia can ‘‘completely recover’’ often without the use of psychotropic medications. Views also vary widely concerning such topics as dangerousness, homelessness, cooperation with family members, and the use of coercive treatments. Contrary to the view often articulated by consumer advocates, among these consumer/professionals at least, there is no monolithic ‘‘consumer perspective’’ on many aspects of recovery.

Nevertheless, virtually all these persons stress the difficulty of overcoming pervasive stigma, hostile attitudes, and other societal barriers to their recovery. One strong message that is voiced by these professionals is that they see a major barrier to their recovery as being how persons with schizophrenia have been, and continue to be, treated by society, including treatment by those entrusted with their care.

Many do not see that their degree of recovery is primarily a function of how disabled they are but feel that traditional cultural, attitudinal, and linguistic barriers to their recovery are important factors that must be considered and measured as we address the issue of recovery. Again, Bassman and Fisher see oppression by the mental health system and by society in general as a primary target for change in order for recovery to occur. Siebert, who on occasion has denied the existence of schizophrenia in himself or in anyone else, sees the hostility of the mental health profession as the major impediment to recovery for those labeled with this condition.

Source of all of the above: http://professored.net/wp-content/up.../11/sbn175.pdf [PDF File]

[Luna-]

Wow, that's interesting. So much hope!

She emphasizes that every journey is unique and that the task is not to become normal but to become who you are and who you are called to be.

That is so beautiful, and so relevant for all of us.