ON BEING INVISIBLE IN THE MENTAL HEALTH SYSTEM
Published in "Journal of Behavioral Health Services and Research" 21(4): 374-387, 1994
The author provides a case study of her daughter's sexual abuse as a child and subsequent experiences as a chronically mentally ill client in the mental health system. Information from 17 years of mental health records and anecdotal accounts are used to illustrate the effects of the abuse, her attempts to reach out for help, and the system's failure to respond. There is evidence that a significant subset of psychiatric patients were severely sexually traumatized in childhood. Yet standard interview schedules consistently neglect to ask questions about such abuse, appropriate treatment is seldom available, and clients are often retraumatized by current practices. Psychiatry's historic resistance to addressing abuse as etiology is being challenged today by powerful economic, political, and professional forces leading to the emergence of a new trauma-based paradigm.
This commentary brings into question one of the basic assumptions operating in the public mental health field today that mental illness is biological or genetic in origin and is therefore treatable primarily by symptom control or management. A case study of my daughter Anna, a victim of early childhood sexual trauma, is used to demonstrate the need for inclusion in the field of an additional view of the etiology of mental illness. Forces supporting the emergence of a new trauma paradigm are highlighted.
From the age of 13 to her recent death at the age of 32, Anna was viewed and treated by the mental health system as "severely and chronically mentally ill.' Communication about who she was, how she was perceived and treated, and how she responded took place through her mental health records. A review of 17 years of these records reveals her being described in terms of diagnoses, medications, symptoms, behaviors, and treatment approaches. She was consistently termed "noncompliant" or "treatment resistant." Initially recorded childhood history was dropped from her later records. Her own insights into her condition were not noted.
When she was 22, Anna was reevaluated after a suicide attempt. For a brief period, she was rediagnosed as suffering from acute depression and a form of posttraumatic stress disorder. This was the only time in her mental health career that Anna agreed with her diagnosis. She understood herself-not as a person with a "brain disease" but as a person who was profoundly hurt and traumatized by the "awful things" that had happened to her.
What Happened to Anna?
Anna was born in 1960, the third of five children, a beautiful healthy baby with a wonderful disposition. At the age of about 2½, she began to scream and cry inconsolably. At age 4, we took her to a child psychiatrist who found nothing wrong with her. When we placed her in nursery school, her problems seemed to lessen.
That Anna was being sexually abused and traumatized at the time is clear now, verified in later years by her own revelations and by the memories of others. Her memories of abuse by a male babysitter were vivid, detailed, and consistent in each telling over the years. They were further verified by persons close to the perpetrator and his family, one of whom witnessed the perpetrator years later in the act of abusing another child.
Anna described the experience of being forcibly restrained and sexually violated at the age of about 3½: "He tied me up, put my hands over my head, blindfolded me with my little T-shirt, pulled my T-shirt overmy head with nothing on below, opened my legs and was examining and putting things in me and all that. . Ugh. It hurt me. I would cry and he wouldn't stop. To do that when I was a little kid was like . . . uh, I don't know. . . .It made me feel pretty bad. I remember after he did that I was walking toward the door out of the room and I was feeling like I was bad. And why not Sarah and Mary (her older and younger sisters) and why just me? And I had this feeling in me that I was bad you know . . . a bad seed . . .and that I was the only one in the world."
Evidence that Anna was betrayed and sexually violated at an even earlier age by another perpetrator, a relative, came to light eventually through the revelations of a housekeeper in whom Anna had confided at the time. She had told this woman that a man"played with her where he was't supposed to" and that the man "hurted her." This abuse was kept secret for nearly 30 years.
Anna remembered trying to tell us, as a little child, what was happening, but there was no one to hear or respond. When she told me a man 'fooled" with her, I assumed she meant a young neighborhood boy and cautioned his parents. When we took her to a physician, she experienced the physical examination as yet another violation: "I remember the doctor you took me to when I told you. He did things to me that were disgusting (pointing to her genital area)."
The trauma Anna experienced was then compounded by the silence surrounding it. She tried to communicate with her rage, her screams, and her terror. She became the "difficult to handle" child. Her screaming and crying was frequently punished by spankings and confinement to her room. No one then could see or hear her truth; sexual abuse did not "exist" in our minds. When later, as a young girl, she withdrew within herself, somehow "different" and "apart" from her peers, we attributed it to her artistic talent or independent personality. We did not see or attend to the terror, dissociation, loneliness, and isolation expressed in her drawings, nor did we heed the hints of trouble expressed by her behaviors. Two grade school psychologists were alone among the professionals we encountered in sensing the turbulence underneath her silence."Anna is confused about her sexual identity", one reported. "You must help her." The other wrote, It would seem that Anna has suppressed or repressed traumatic incidents.
Chaos and parental conflict existed in Anna's family from the age of 11 to 13. Although her four brothers and sisters survived the multiple geographic moves, alternative lifestyles, disintegration of their parents marriage, and episodic violence and alcoholism, Anna did not. She "broke" at age 13. A psychiatrist prescribed Haldol to "help her to sleep." She suffered a seizure in reaction, requiring emergency hospitalization. Thus was she introduced to the mental health system.
Anna's Invisibility in the Mental Health System
Anna was a client of the mental health system for 19 years, until age 32. For nearly 12 of those years, she was institutionalized in psychiatric hospitals. When in the community, she rotated in and out of acute psychiatric wards, psychiatric emergency rooms, crisis residential programs, and locked mental facilities. Principal diagnoses found in her charts included borderline personality with paranoid and schizo-typal features, paranoia, undersocialized conduct disorder aggressive type, and various types of schizophrenia including paranoid, undifferentiated, hebephrenic, and residual. Paranoid schizophrenia was her most prominent diagnosis. Chronic with acute exacerbation, subchronic, and chronic courses of schizophrenia were identified. Symptoms of anorexia, bulimia, and obsessive-compulsive personality were also recorded. Treatments included family therapy; vitamin and nutritional therapy; insulin and electro convulsive "therapy"; psychotherapy; behavioral therapy; art, music, and dance therapies; psychosocial rehabilitation; intensive case management; group therapy; and every conceivable psycho pharmaceutical treatment including Clozaril. The use of psychotropic drugs comprised 95% of the treatment approach to her. Although early on there were references to dissociation, her records contain no information about or attempts to elicit the existence of a history of early childhood trauma.
Anna was 22 when she learned, through conversation with other patients who had also been sexually assaulted as children, that "she was not the only one in the world." It was then that she was first able to describe to me the details of her abuse. This time, with awareness gained over the years, I was able to hear her.
Events finally became understandable. Sexual torture and betrayal explained her constant screaming as a toddler, her improvement in nursery school, and the reemergence of her disturbance at puberty. It explained the tears in her paintings, the content of her "delusions", her image of herself as shameful, her self-destructiveness, her involvement in prostitution and sadistic relationships, her perception of the world as deliberately hurtful, her isolation, and her profound lack of trust. I thought with relief and with hope that we now knew why treatment had not helped. Here at last was a way to understand and help her heal.
The reaction of the mental health system was to ignore this information. When Anna or I would attempt to raise the subject, a look would come into the professionals' eyes as if shades were being drawn. If notes were being taken, the pencil would stop moving. We were pushing on a dead button. This remained the case until she took her life, 10 years and 15 mental hospitals later.
There was one exception. When Anna was 25 years old, the chief psychologist on a back ward of a state hospital listened to her after a suicide attempt and took seriously what she told him. He initiated a new treatment approach that addressed her experiences of sexual abuse. Antidepressant medication was prescribed, but psychotropic drugs were viewed as suppressing the thought processes and emotions she needed to feel fully so as to begin healing. Rather than relying on drugs as a solution to escalating stress, Anna was helped through these crises and taught how to deal with them. Art therapy was de-emphasized and art lessons were begun, building her artistic talent and increasing her self-esteem. Discussions began about what she needed to leave the hospital and live in the community.
This situation was not to last. The state hospital was closed because of rampant and intractable abuse. Anna's treatment team disbanded. She returned to the system of public mental institutions and community mental health agencies, a world in which she was-once again-invisible and undefended. In and out of the "protected environments" of mental health institutions, she repeatedly experienced coerced or manipulated sex, verbal and physical abuse, and rape. When she "broke," she became like a 3-or 4-year old consumed by rage and terror. The thoughts, voices, and nightmares that tormented her were sexual and torturing in nature. Violent itches, twitching, stabbing pains, ice cold spots, and innumerable other somatic symptoms invaded her slight body.
Over her remaining years in community agencies, acute psychiatric hospitalizations, medical and psychiatric emergency rooms, and the back wards of state mental institutions, she experienced night terrors and insomnia; fears of being taken over by outside forces and of "becoming someone else"; voices telling her she was evil, commanding her to be raped and punished; and eating disorders, dysmenorrhea, and amenorrhea. She painted self-portraits covered with tears, bodies in bondage without hands or arms, and images of multiple persons and sexual acts. She was plagued by intrusive thoughts of abusing her own child, of being tortured, of being "seen" naked by everybody, and of people"getting off sexually" on her torment.
She would often flash back into experiencing her childhood trauma, screaming in terror and pleading for help. On one such occasion, I went with her to a psychiatric emergency service. Calmed enough to answer questions, she stated her diagnosis to be posttraumatic stress disorder. The psychiatrist seemed to be recording this information on the form when my daughter went over looked at what she had written, turned to me, and said, "Mom, she wrote down schizophrenic".
She disclosed, in words and behavior, fragmented details of the awful things that had happened to her. Once, while in restraints, she screamed over and over again, "I'm just a sex object, I'm nothing but a sex object." She told her therapist of the "voices" inside her saying, "I'm a very young person," "I want you to help me," and "The baby is crying." Once she called her therapist late at night, pleading for her to come to the hospital because "the baby wants to talk to you." Permission was denied by the psychiatrist in charge.
Believing herself to be "bad," "disgusting," and "worthless," as child sexual abuse victims often do, 1-10 she hurt, mutilated, and repeatedly revictimized herself. She put cigarettes out on her arms, legs, and genital area; bashed her head with her fists and against walls; cut deep scars in herself with torn-up cans; stuck hangers, pencils, and other sharp objects up her vagina; swallowed tacks and pushed pills into her ears; attempted to pull her eyes out; forced herself to vomit; dug her feces out so as to keep food out of her body; stabbed herself in the stomach with a sharp knife; and paid men to rape her.
Again and again, as victims of sexual assault often do, (11-21) Anna sought relief through suicide. She tried to kill herself many times, slashing her wrists, attempting to drown herself, taking drug overdoes, poisoning herself by spraying paint and rubbing dirt into self-inflicted wounds, slitting her throat with a too dull razor, and hanging herself from the pipes of a state hospital. She dared men to kill her- on one occasion by throwing her off a bridge and on another by stepping on her back to break it. Many times she would have succeeded had it not been for outside interventions or her own fears of dying or eternal damnation.
Many of the mental health professionals she encountered were highly skilled in their disciplines. Many genuinely cared for Anna, and some grew to love her. But in spite of their caring, her experience with the mental health system was a continuing reenactment of here original trauma. Her perception of herself as "bad," "defective," a "bad seed," or an evil influence on the world was reinforced by a focus on her pathologies, a view of her as having a diseased brain, heavy reliance on psychotropic drugs and forced control, and the silence surrounding her disclosures of abuse.
During the months prior to her death, Anna and I began to reconstruct her story. She completed more than 200 pages of detailed memories of her childhood from birth to age 15. In her own words, including her writings and artwork and the memories of her brothers, sisters, and others who had been close to her, she spoke her truth. "Mom" she said, "I'm gonna try not to live in these places because I want to get my life-find some friends- get out some day. Maybe this book will help. Maybe someone will come along and understand me. And they won't just say "drugs, drugs, drugs!" She gave her doctor a draft of her book. He did not read it.
Just 4 days after her 32nd birthday, after another haunted sleepless night, she hung herself, by her T-shirt, in the early morning bleakness of her room in a California state mental hospital. She was found by a team of three night staff who were on their way in to give her another shot of medication.
The Wall of Silence and Invisibilty
The tragedy of Anna's life is replicated daily in the lives of many individuals viewed as chronically and severely mentally ill. Unrecognized and untreated for their childhood trauma, they repeatedly cycle through the system's most expensive psychiatric emergency , acute inpatient, andlong-term institutional services. Their disclosures of sexual abuse are discredited or ignored. As happened during their early childhood, they learn within the mental health system to keep silent.
Clinicians who acknowledge the prevalence of traumatic abuse and recognize its etiological and therapeutic significance are deeply frustrated at being denied the tools and support necessary to respond adequately. Sometimes, as Anna's psychologist did, these clinicians leave the mental health system entirely, deciding they can no longer practice with integrity within it.
A seemingly impenetrable wall of silence isolates the reality and impact of childhood sexual abuse from the consciousness of the public mental health system. No place exists within the system's formal information management structures to receive these data from clients. We do not elicit the information, nor do we record it. Yet to respond therapeutically without such knowledge is analogous to "treating a Vietnam veteran without knowing about Vietnam or what happened ther " (p. 643). 22 Why, with childhood sexual abuse an open issue for discussion and treatment elsewhere, is it not addressed in the public mental health system?
A Paradigmatic Explanation: The Inability to See
Although rehabilitative, psychotherapeutic, and self-help approaches operate within the system, the dominant paradigm within which these approaches are subsumed is clearly that of biological psychiatry. Thomas Kuhn, in his analysis of the history and development of the natural sciences, brought the concept of "paradigm" into popular usage. He viewed paradigms as the conceptual networks through which scientists view the world. Data that agree with the scientists' conceptual network are seen with clarity and understanding. But unexpected "anomalous" data that do not match the scientific paradigm are frequently "unseen," ignored, or distorted to fit existing theories.
In the field of mental health, a biologically based understanding of the nature of "mental illness" methodologies; the theories taught in universities and applied in the field; the interventions, treatment approaches, and programs used; and the outcomes seen to indicate success.
Paradigmatically understood, the mental health system was constructed to view Anna and her "illness" solely through the conceptual lens of biological psychiatry. The source of her pain, early childhood sexual abuse trauma, was an anomaly, a contradiction to the paradigm and, as such, could not be seen through this lens. Her experience did not match the professional view of mental illness. It did not fit within the system's prevailing theoretical constructs. There was not adequate language available within the profession to articulate or label it. There were not reimbursement mechanisms to cover its treatment. It was not addressed in curricula for professional training and education, nor was there support for research on the phenomenon. There were no tools,treatment, rehabilitation, or self-help interventionsfor responding to it. And there was no political support within the field for its inclusion. Screened through the single lens of the biological paradigm, Anna's experience could not be assimilated. It had to be "unseen," rejected, or distorted to fit within the parameters of the accepted conceptual framework.
As a result of this paradigmatic "blindness," conventionally accepted psychiatric practices and institutional environments repeatedly retraumatized Anna, reenacting and exacerbating the pain and sequelae of her childhood experience. Table 1 illustrates that retraumatization.
The effect of this institutional retraumatization was to continually leave Anna "in a condition that fulfilled the prophecy of her pathology" (p.5).24 This was especially true in the use of psychotropic medication. Survivors of trauma tell us the capacity to think and to feel fully is essential for recovery. Psychotropic drugs continually robbed Anna of these capacities. Several years ago, she had been through a crisis period without medication. For days following, she asked for me to hold her. She talked softly about her feelings, crying gently, showing trust through touching and hugs. One day after her newly prescribed medications were beginning to take effect, she said to me with a flatter voice and her eyes again haunted. "Mom, the feeling of love is going away." As her feelings of rage, grief, and terror were suppressed, so were here feelings of love, laughter, caring, and intimacy, isolating her again from herself and from others and preventing the possibility of healing.
Medication can be helpful if used cautiously with the full understanding and consent of the patient. But without particular knowledge of the kinds of medications that can alleviate symptoms and facilitate recovery from trauma, medications can cause incalculable damage. For Anna, the system's reliance on psychopharmaceutical treatment was a metaphor for her original trauma. As sexual assault had violated physical and psychological boundaries of self, forced neuroleptic drugs also intruded past her boundaries, invading, altering, and disabling her mind, body, and emotions. She once said to me, "I don't have a safe place inside myself."
The Emerging Paradigm
Although the established paradigm may help to alleviate the suffering of those whose mental illness is strictly genetic or biological in nature, it is failing for a significant group whose histories contain sexual and/or physical trauma. Rising cognizance of this failure is one of several factors currently affecting the mental health field, indicating the possibility that a new paradigm, based on trauma, is emerging. The extraordinary resistance to such a paradigm is also indicative of its power and its eventual emergence.
Resistance to a Trauma Paradigm
Although paradigm shifts mark the way to progress and opportunity, they are always resisted initially. They cause change, disrupt the status quo, create tension and uncertainty, and involve more work. (25) Resistance to a sexual abuse trauma paradigm has existed for more than 130 years, during which time the etiological role of childhood sexual violation in mental illness has been alternatively discovered and then denied. In 1860, the prevalence and import of child sexual abuse was exposed by Amboise Tardieu, (26) in 1896 by Sigmund Freud, (27) in 1932 by Sandor Ferenczi, (28) and in 1962(29) and 1984 (30) by C. Henry Kempe. Each exposure was met by the scientific community with distaste, rejection, or discreditation. Each revelation was countered with arguments that in essence blamed the victims and protected the perpetrators. Freud, faced with his colleagues ridicule of and hostility to his discoveries, sacrificed his major insight into the etiology of mental illness and replaced his theory of trauma by the view that his patients had fantasized their early memories of rape and seduction.(26) Today, 100 years later, in spite of countless instances of documented abuse, this tradition of denial and victim blame continues to thrive.
Psychiatrist Roland Summit refers to this denial as "nescience" or "deliberate, beatific ignorance." He proposes that "in our historic failure to grasp the importance of sexual abuse and our reluctance to embrace it now, we might acknowledge that we are not naively innocent. We seem to be willfully ignorant, nescient? (pp. 418-419).(31)"
At this point in history, however, multiple and divergent forces are confronting nescience with truth. Although these forces will continue to meet resistance, they appear to be forming a powerful movement that will help to protect children from adult violation and will promote acceptance of a trauma-based paradigm recognizing the pain of individuals like my daughter and offering them "the radical prospect of recovery (p.413).(31)"
Implications for Mental Health Administrators and Policymakers
Mental health administrators and policymakers are in a unique position today to prevent the recreation of tragedies such as that of my daughter Anna. The tools and resources they need to do so can be found in the following forces supporting the emergence of the new trauma paradigm.
Among the most significant forces for change are the victims themselves. For the first time in history, survivors of sexual trauma are speaking out-revealing their experiences of having been sexually violated as children, lobbying politically for services and legislative action, challenging societal denial and nescience, and keeping the reality of the sexual assault of children in the arena of public awareness. Growing numbers of these survivors are former mental patients with severe dissociative disorders. After years of hospitalization and misdiagnoses such as borderline personality disorder, major depression, and schizophrenia, they talk of how they could not have recovered had not someone recognized and responded therapeutically to their childhood experiences of abuse and torture. Finally, ex-patients in the mainstream consumer movement are beginning to reveal their experiences of sexual violation, the ways in which they felt retraumatized by treatment in psychiatric hospitals and institutions, and their ongoing struggle to heal from both childhood abuse and adult institutional revictimization.
The number of studies, instruments, articles, books, and professional journals based on a trauma paradigm is multiplying, making visible the most hidden and most damaged victims of childhood sexual assault and heightening awareness of such anomalies to the psychiatric paradigm. Research is revealing significantly higher prevalence rates of childhood sexual abuse among female psychiatric outpatients and inpatients (as high as 50 to 70%)(12) than those found in the general population. Many of these clients require emergency, acute inpatient care, and long-term hospitalization services.3,12-14,21,31-57 Studies establish a history of childhood sexual trauma to have significant implications for diagnosis and treatment, 4,7,8,11,12,14,18,31-34,36-40,42,44,45,47,49,50,55-90 and the routine inquiry about childhood sexual abuse to be an essential component of emergency, acute inpatient, and outpatient psychiatric protocols.3,5,12,37,39,45,46,71,91,92 The growing pool of data indicates that when trauma is recognized and responded to in specific therapeutic interaction, possibilities of recovery exist even for those survivors of sexual abuse who are viewed as schizophrenic, depressive, or borderline.31,40,61,76,84,85,89,93-101 Research findings showing inextricable connections between trauma, physiology, and the brain are now pointing the way to new relationships between these areas of data under a trauma paradigm.102
Political support for a new trauma paradigm is growing as governmentally sanctioned committees are formed and local, state, and federal governing bodies pass legislation requiring mental health systems to address issues of physical and sexual abuse trauma in their clients. One such notable step is a 1993 congressional mandate directing the national Center for Mental Health Services (CMHS) to pay attention to women?s issues. After surveying the field, CMHS established its priority focus to be on physical and sexual abuse in the lives of seriously mentally ill women.
New therapeutic approaches to sexual and other trauma in seriously mentally ill persons are being used and developed outside of and on the fringes of the public mental health system. Examples can be found in the dissociative disorder units of private psychiatric hospitals, in the work of art therapists using imagery and play therapy with traumatized children, in the treatment of severely traumatized war veterans, in the specialized victims and offenders services now serving severely mentally ill individuals, in incest survivor self-help groups, in rape treatment centers, increasingly in the field of child psychiatry, and in the work of private therapists.
Respected national and international professional associations focused on research and treatment of severely traumatized children and adults have formed over the past decade, and networks of professionals, advocates, and ex-patient survivors increasingly proliferate.
Women's rights and mental health litigators are being asked to recognize the connection between sexual violence, craziness, and the treatment of women in psychiatric institutions. These connections are seen to have consequences for rights to treatment, rights to refuse treatment, and forced medication and seclusion and restraint cases.24
Finally, a powerful force for paradigmatic change at this time in history is the advent of health care reform, introducing managed care, capitation, and the need for public mental health organizations to compete in providing quality services to consumers in a cost-effective way. Incorrect diagnoses and treatment exacerbate the condition of traumatized patients, making them dependent on the system?s most restrictive and expensive services. An analysis of 17 years of Anna's records shows that she was hospitalized a total of 4,248 days. The total cost for this hospitalization, figured at $640 a day, was $2,718,720. Had she lived to the age of 52, these costs would have nearly tripled to $7,390,720. Not included in this analysis is the cost of social services, police, ambulance and legal/court services, conservator and patient advocacy services, residential treatment, psychiatric and therapist sessions, crisis services, day programs, and intensive case management. With studie s showing prevalence rates as high as 81%46 of hospitalized patients with histories of sexual and/or physical trauma, the fiscal implications to exploring a trauma paradigm are obvious.
The ideas, practices, and standard operating procedures that got the public mental health field and its various agencies and institutions to where they are today will clearly not take them into the future. The rules have changed dramatically. Forces shaping a new paradigm include health care reform and managed care, the need to compete and to deliver quality services in cost-effective ways, the emergence of political activism and public testimony on the part of ex-patient survivors of trauma, the proliferation of research and writing about sexual trauma and serious mental illness, the intense interest and debate around the import of sexual abuse for treatment, the developing legal interest in the system's retraumatization of sexually abused patients, the growth of private psychiatric hospital services for persons with dissociative disorders, and the advances around the fringes of the public mental health field providing evidence that, when trauma is recognized and responded to therapeutically, actual recovery is possible for persons with histories of hospitalization and use of the most expensive services of the system. Resources for "re-tooling" the mental health system to effectively address trauma are to be found in the forces pushing the field to change. Institutions, agencies, and systems that ignore the opportunities presented by the new trauma paradigm will do their patients an injustice.