Schizophrenia Bulletin vol. 40 no. 6 pp. 1185–1186, 2014 doi:10.1093/schbul/sbu096 Advance Access publication June 27, 2014
Editorial
Learning From People With Schizophrenia
Stephen R. Marder*,1 and Robert Freedman2 Department of Psychiatry, Semel Institute for Neuroscience at UCLA and VA Desert Pacific Mental Illness Research, Education, and Clinical Center, Los Angeles, CA; 2Department of Psychiatry, University of Colorado, Denver, Denver, CO
1
*To whom correspondence should be addressed; Building 210, Room 130, West Los Angeles VA Healthcare Center, 11301 Wilshire Blvd, Los Angeles, CA 90073, US; tel: 310-268-3647, fax: 310-268-4056, e-mail: [email protected]
difficulty in describing her experience to others. Saks describes her psychosis as a “waking nightmare.” Both writers were treated for cancer after they had accepted and managed their illnesses. Payne comments that she would rather have cancer than a bad case of schizophrenia. The comparison emphasizes the extraordinary pain that can be associated with psychosis. Saks makes the wry observation that friends visit you and bring you flowers when you have cancer. This does not happen with schizophrenia. This underlines the loneliness and isolation of schizophrenia psychosis. Both writers were diagnosed much later than they should have been. Saks had deteriorated to some extent while she was an undergraduate at Vanderbilt (although she managed to graduate at the top of her class). One can imagine that her adult life might have been very different if she had experienced the friendships and romances of undergraduate life. While a graduate student at Harvard, Payne’s psychotic experience were never treated properly by a psychiatrist. She wonders how her life might have been different if she had completed her PhD in Italian at Harvard and she had developed a career as a scholar. Although Saks was diagnosed later than she should have been, she managed to receive much better treatment. She was first treated in an excellent hospital setting and referred to a Kleinian analyst. Most of our colleagues would probably have seen this referral as horribly inappropriate—but it turned out to be brilliant. Her analyst was comfortable with the primitive and bizarre thoughts and feelings she was experiencing and Saks was able to use her own intellectual abilities—which are very well preserved—to frame her belief that she was a mass murderer and capable of further horrors. She derived enormous benefit from this psychoanalyst and others who have treated her since. The principle is not that psychoanalysis is the preferred treatment for schizophrenia. Rather, this writer can help the reader appreciate that a talented clinician—by trying to understand someone’s frightening
Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center 2014.
1185
Downloaded from http://schizophreniabulletin.oxfordjournals.org/ at Kainan University on May 6, 2015
Most people—including most clinicians who treat schizophrenia—find it difficult to understand what it is like to have delusional ideas. Delusional ideas can seem implausible or bizarre and the people who harbor these ideas can seem strange or even frightening. People with schizophrenia and other illnesses associated with delusions are usually aware of these attitudes. We believe that this has serious consequences for people with schizophrenia. They may fail to experience the empathic understanding that anxious or depressed people will receive from friends and families. It is not uncommon for treating clinicians to be skeptical that a patient who seems rational on the surface can really have such a bizarre idea. This can lead patients to feel misunderstood and to feel isolated from people who may help them. In addition, people with psychosis are often poor describers of their own experiences. Fortunately, highly articulate individuals with delusions from schizophrenia have recently published memoirs that make their internal experiences much more understandable. The 2 memoirs—The Center Cannot Hold1 by Elyn Saks and Speaking to My Madness: How I Searched for Myself in Schizophrenia2 by Roberta Payne—provide intimate portraits of 2 women who have lived with psychosis for much of their lives. Saks is a Professor in the Law School at the University of Southern California and the recipient of a MacArthur “genius” Award. Payne used her PhD in Comparative Literature as a faculty member at Tulane and the University of Denver. Both the similarities and differences in their lives had important consequences and show the value of these books. Both experienced terrifying delusions which were frightening and both describe a feeling of terror. It is interesting that both of them address the statements by some that psychosis can enrich a person. Payne makes it clear that her psychosis led her to a separate reality which she describes as being “on the other side of an endless panel of glass, the air is filthy and acidic; and you can’t get out.” She also describes an experience of aloneness that comes from a
S. R. Marder and R. Freedman
1186
need for an antipsychotic, she felt liberated and felt that her illness no longer defined her. There are many other descriptions of the experience of psychosis by good writers. The Schizophrenia Bulletin has published First Person Accounts in every issue since 1969 (and they are available at http://schizophreniabulletin.oxfordjournals.org). One of the themes that runs through these accounts—as well as the books by Saks and Payne—is the feeling by people with psychosis that they live apart from the people around them. Moreover, this feeling adds to the burden of the illness. We believe that reading these descriptions may help clinicians, family members, friends, and others to listen better to the concerns of patients. This, in turn, may help people with psychosis feel less isolated. References 1. Saks, E.R. The Center Cannot Hold. New York: Hyprion; 2007. 2. Payne, R. Speaking to My Madness. North Charleston, SC: Create Space; 2013.
Downloaded from http://schizophreniabulletin.oxfordjournals.org/ at Kainan University on May 6, 2015
thoughts—can address their feeling of isolation and help make their delusional thoughts less frightening. Both writers also emphasize the value of friendship for people living with psychosis. Payne’s family—particularly her mother and her sister—were unable to accept her illness. Later in her life she found people who appreciated her including a scholar and poet who asked her to translate her poetry from Italian to English and her faculty colleagues at the University of Denver. Payne has also found perspective and purpose in teaching beginning medical students, now over 1500, their first lesson in speaking with someone about her mental illness. Saks was able to select a small group of friends who understood that she had a mental illness and who helped to ground her and to prevent her from making serious mistakes when she was ill. Saks and Payne came to accept their need for treatment—particularly their need for antipsychotic medication. Saks struggled with her psychiatrists and pressured to have her medications reduced. But once her medications were working, she appreciated how much they improved the quality of her life. She makes the interesting observation that once she accepted her illness and her
Editorial
Learning From People With Schizophrenia
Stephen R. Marder*,1 and Robert Freedman2 Department of Psychiatry, Semel Institute for Neuroscience at UCLA and VA Desert Pacific Mental Illness Research, Education, and Clinical Center, Los Angeles, CA; 2Department of Psychiatry, University of Colorado, Denver, Denver, CO
1
*To whom correspondence should be addressed; Building 210, Room 130, West Los Angeles VA Healthcare Center, 11301 Wilshire Blvd, Los Angeles, CA 90073, US; tel: 310-268-3647, fax: 310-268-4056, e-mail: [email protected]
difficulty in describing her experience to others. Saks describes her psychosis as a “waking nightmare.” Both writers were treated for cancer after they had accepted and managed their illnesses. Payne comments that she would rather have cancer than a bad case of schizophrenia. The comparison emphasizes the extraordinary pain that can be associated with psychosis. Saks makes the wry observation that friends visit you and bring you flowers when you have cancer. This does not happen with schizophrenia. This underlines the loneliness and isolation of schizophrenia psychosis. Both writers were diagnosed much later than they should have been. Saks had deteriorated to some extent while she was an undergraduate at Vanderbilt (although she managed to graduate at the top of her class). One can imagine that her adult life might have been very different if she had experienced the friendships and romances of undergraduate life. While a graduate student at Harvard, Payne’s psychotic experience were never treated properly by a psychiatrist. She wonders how her life might have been different if she had completed her PhD in Italian at Harvard and she had developed a career as a scholar. Although Saks was diagnosed later than she should have been, she managed to receive much better treatment. She was first treated in an excellent hospital setting and referred to a Kleinian analyst. Most of our colleagues would probably have seen this referral as horribly inappropriate—but it turned out to be brilliant. Her analyst was comfortable with the primitive and bizarre thoughts and feelings she was experiencing and Saks was able to use her own intellectual abilities—which are very well preserved—to frame her belief that she was a mass murderer and capable of further horrors. She derived enormous benefit from this psychoanalyst and others who have treated her since. The principle is not that psychoanalysis is the preferred treatment for schizophrenia. Rather, this writer can help the reader appreciate that a talented clinician—by trying to understand someone’s frightening
Published by Oxford University Press on behalf of the Maryland Psychiatric Research Center 2014.
1185
Downloaded from http://schizophreniabulletin.oxfordjournals.org/ at Kainan University on May 6, 2015
Most people—including most clinicians who treat schizophrenia—find it difficult to understand what it is like to have delusional ideas. Delusional ideas can seem implausible or bizarre and the people who harbor these ideas can seem strange or even frightening. People with schizophrenia and other illnesses associated with delusions are usually aware of these attitudes. We believe that this has serious consequences for people with schizophrenia. They may fail to experience the empathic understanding that anxious or depressed people will receive from friends and families. It is not uncommon for treating clinicians to be skeptical that a patient who seems rational on the surface can really have such a bizarre idea. This can lead patients to feel misunderstood and to feel isolated from people who may help them. In addition, people with psychosis are often poor describers of their own experiences. Fortunately, highly articulate individuals with delusions from schizophrenia have recently published memoirs that make their internal experiences much more understandable. The 2 memoirs—The Center Cannot Hold1 by Elyn Saks and Speaking to My Madness: How I Searched for Myself in Schizophrenia2 by Roberta Payne—provide intimate portraits of 2 women who have lived with psychosis for much of their lives. Saks is a Professor in the Law School at the University of Southern California and the recipient of a MacArthur “genius” Award. Payne used her PhD in Comparative Literature as a faculty member at Tulane and the University of Denver. Both the similarities and differences in their lives had important consequences and show the value of these books. Both experienced terrifying delusions which were frightening and both describe a feeling of terror. It is interesting that both of them address the statements by some that psychosis can enrich a person. Payne makes it clear that her psychosis led her to a separate reality which she describes as being “on the other side of an endless panel of glass, the air is filthy and acidic; and you can’t get out.” She also describes an experience of aloneness that comes from a
S. R. Marder and R. Freedman
1186
need for an antipsychotic, she felt liberated and felt that her illness no longer defined her. There are many other descriptions of the experience of psychosis by good writers. The Schizophrenia Bulletin has published First Person Accounts in every issue since 1969 (and they are available at http://schizophreniabulletin.oxfordjournals.org). One of the themes that runs through these accounts—as well as the books by Saks and Payne—is the feeling by people with psychosis that they live apart from the people around them. Moreover, this feeling adds to the burden of the illness. We believe that reading these descriptions may help clinicians, family members, friends, and others to listen better to the concerns of patients. This, in turn, may help people with psychosis feel less isolated. References 1. Saks, E.R. The Center Cannot Hold. New York: Hyprion; 2007. 2. Payne, R. Speaking to My Madness. North Charleston, SC: Create Space; 2013.
Downloaded from http://schizophreniabulletin.oxfordjournals.org/ at Kainan University on May 6, 2015
thoughts—can address their feeling of isolation and help make their delusional thoughts less frightening. Both writers also emphasize the value of friendship for people living with psychosis. Payne’s family—particularly her mother and her sister—were unable to accept her illness. Later in her life she found people who appreciated her including a scholar and poet who asked her to translate her poetry from Italian to English and her faculty colleagues at the University of Denver. Payne has also found perspective and purpose in teaching beginning medical students, now over 1500, their first lesson in speaking with someone about her mental illness. Saks was able to select a small group of friends who understood that she had a mental illness and who helped to ground her and to prevent her from making serious mistakes when she was ill. Saks and Payne came to accept their need for treatment—particularly their need for antipsychotic medication. Saks struggled with her psychiatrists and pressured to have her medications reduced. But once her medications were working, she appreciated how much they improved the quality of her life. She makes the interesting observation that once she accepted her illness and her
