Personal Accounts: First-Person Accounts in the Journal's Second 25 Years

In 1994 Psychiatric Services formally recognized the importance of contributions to the professional literature by patients and by family members with the establishment of this column (1). Since the column's inception, 34 personal accounts have appeared, first quarterly and then at least six times a year. They appear in the reference list in order of their publication (2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21,22,23,24,25,26,27,28,29,30,31,32,33,34,35), beginning with Sylvia Caras' contribution (2) about accepting the label of "disabled."

As part of this year's observance of Psychiatric Services's 50 years of publication, the Personal Accounts column is examining the history of the journal's publication of first-person accounts. Last month's column excerpted the six accounts published between 1950 and 1974 (36).

This month's column covers the second 25 years, focusing on the accounts that were published before this column began. Only three such accounts were located, although the journal did publish at least one article that used extracts from first-person accounts to present patients' perspectives (37).

All three accounts were written by women who at the time their articles were published had become involved in some way in the mental health service delivery system. All three women discuss their treatment.

Empowering treatment

When her account was published in 1984, Marcia Lovejoy (38) was the executive director of Project Overcome in Minneapolis. She had been diagnosed about 20 years earlier as having chronic process schizophrenia.

"When I formally entered the world of psychiatry in 1965, at age 17, doctors interviewed my family to verify that I had indeed been a strange and troubled child from a very young age. Two years later one doctor, who spent the most time researching my past, declared that I had been autistic since I was two. That label only hung a pall of failure over my family, who had always suspected something was wrong but never gave up hope that I would somehow outgrow it.…

"I entered the treatment world of a chronic mentally ill person. Chronic treatment is the lot of a person labeled chronically ill. The people working with me had no hope for my recovery; I met quite a few—a mixed bag of doctors, nurses, aides, recreation and occupational therapy personnel—as I drifted from hospitalizations to day programs to socialization groups, and so forth. In six years of treatment I would be seen by four psychiatrists, be hospitalized in two states a total of eight times, go to different day hospitals, receive shock treatments, live in a foster-care home, and receive megavitamins and three different neuroleptics (sometimes thousands of milligrams at a time, sometimes concurrently with three different antidepressants).

"I was advised to avoid stress and to report an increase in symptoms. I was also told to smile more, but the few times I could bring myself to laugh at anything, I was told my laughter was inappropriate.

"Periodically I saw patients physically and mentally abused by mental health workers who seemed sicker than we were. I saw many adults treated as children, never allowed to be angry or cry for even the most understandable reasons. I did not suffer physical abuse; I sat downcast on the hospital couches and waited patiently to be told to do or not do something.

"Meanwhile I either listened to voices or wished I were dead. Sometimes I believed I was dead, but mostly I just wished for death and sought relief in sleep, as did the rest of the chronic patients. Hundreds of times I gave up hope of ever finding help for my symptoms. I learned to watch my emotions and fear them and became obsessive about taking all medication as prescribed. It seemed over those years that the staff were as vigilant and fearful of my emotions as I was, or possibly I learned it from them; it is difficult to say.…

"In 1971… I was in a day hospital my mother had found that would take me for free if I lived in the area. My family had run out of hospitalization insurance and, despite my obvious need for the hospital, they could afford only this day program and a dear kindly lady who would see that I got there regularly.

"One day in the three-month day program [my psychotic exacerbation] ended as suddenly as it began. I finished out the last half of the program a happy participant in group therapy, my first such involvement in six years.…

"When the program ended I was far from ready to get a job; I tried and failed miserably. In 1972 I went again to the same day hospital but became bored with the routine. I gave up on recovery and decided the less I felt, the better. I began to drink; it calmed my anxiety better than medication and helped numb my feelings just as the medication had.…

"The psychiatrist who saw me in the hospital [in a drug and alcohol treatment program] talked with me at length and then said something I will long remember. He said he had never seen anyone who was as sick as I who could express her symptoms as well as I could. He said he did not want to believe I could not recover, and, over the protestations of the chemical dependency folks, he insisted I learn their treatment approaches. This was a major turning point for me.… I was empowered to change my life through the help of others rather than being a passive victim, and to replace self-pity and helplessness with courage and honesty.…

"I secretly hoped that I was only an alcoholic and that this psychiatric stuff was a thing of the past. I left the hospital and went only to Alcoholics Anonymous because I preferred to be a recovered alcoholic rather than a mental patient.…

"The emotional torment from the past quickly overwhelmed me, and I went back to the hospital, my psychiatrist, and my medication. However, I learned a valuable lesson and resumed searching, now with the aid of my psychiatrist and a supportive therapy group, for tools to identify the mysterious triggers to my emotional anguish and for the controls I could use to quell them.…

"In 1975 I entered a halfway house with a special staff, one that had worked with a lot of ill people and, most important, knew how to have hope. Some of the staff were themselves recovered mentally ill people. Their very existence was a turning point of hope for me. The staff helped me continue to relearn to keep my attitude open and trusting toward people; even when I felt great distrust, they taught me to talk about my feelings and to find ways to believe in people. Their proposition was two-sided: I would work to become more open; they would work to become worthy of my trust.

"The fact that many of them spoke of recovery in the first person weighed heavily in my decision to trust. Although they failed at times, I learned to talk about even this most painful event and thus see it through to a good resolution."

Earlier in her account, Ms. Lovejoy wrote, "I have found many ways of handling symptoms so that my life is no longer out of control. I have come a long hard way. Many mental health professionals can say I was mislabeled and dismiss what I have experienced and learned; others can give me new labels. However, I hope some will not close their minds to what I have to offer. If the thousands of recovered people I have met these past years mean anything, there is much to be learned from those who have been there and back."

Dubious treatments and valued treatments

Esso Leete's account (39) was published in 1987. At that time she was employed full time as a medical records transcriptionist at the Fort Logan Mental Health Center in Denver and was the founder and director of the Denver Social Support Group.

"Toward the end of my first semester [in college], I had my first psychotic episode. I did not understand what was happening and was extremely frightened. The experience left me exhausted and confused, and I began hearing voices for the first time. Reality as others knew it had given way to the multiple realities with which I would now live.

"I was admitted to a psychiatric hospital, diagnosed as having schizophrenia, treated with medications, and released after a few months. Over the next two years I was hospitalized in psychiatric facilities five times, the longest hospitalization lasting a year. During my late teens and early 20s, when my age demanded that I date and develop social skills, my illness required that I spend my adolescence on psychiatric wards. To this day I mourn the loss of those years.…

"After spending nearly two years in a series of hospitals, I began weekly outpatient therapy and medication management at the local psychiatric hospital at which I had received inpatient care. I attended a local college part-time and was married to my first husband at the end of my first semester. We moved to another state, where I continued on medication and received both individual and group psychotherapy.

"My condition improved, and a few years later I discontinued outpatient therapy and requested that my medication be gradually tapered off. Throughout most of this time I was employed, first in a series of fast-food restaurants and later as a secretary at a college. For the next ten years, I did not require hospitalization. During that time, I was divorced from my first husband and married a community mental health center psychiatrist. Although I experienced some acute flare-ups of symptomatology during that period, I had no recurrence of persistent, disabling symptoms.

"When more serious symptoms returned about ten years later, I denied their existence. The more people alluded to my illness, treated me negatively, and recommended I become reinvolved in therapy, the more resistant and angry I became. I had decided that I was not ill, that I did not need the medications, and that I did not wish to be involved in psychiatric treatment. I just did not want to be sick any more, an understandable desire, and I was convinced that if I got rid of the evidence of illness I would be magically cured. It didn't work.

"Instead, having discontinued medications years earlier and now withdrawing from other forms of support, I experienced more symptoms. It is my belief that the actions I took were self-destructive responses to my despondency about being mentally ill. I was aided in my downhill plunge, however, by several of the psychiatric institutions at which I was treated.

"One private psychiatric hospital in Denver was particularly destructive. I was banned from group therapy sessions, my food was monitored, my time was regulated, and my roommates were removed from my room and thus from my negative influence.

"Toward the end of my hospitalization, I was placed in seclusion and restraints every day. I was forbidden to cross a red line painted on the floor, much less leave the unit. Not surprisingly, I did not improve, as such power struggles and automatic limit setting are rarely therapeutic. The more I was ostracized and punished, the angrier I became and the more I rebelled. Slowly, however, my desperation turned to resignation and hopelessness.…

"After five months on the unit, any therapeutic alliance that had been established was long gone. One day I announced that I would soon be escaping.… Within about an hour, I had successfully eloped from the unit."

A second hospitalization occurred, with more devastating results, and the author was released. She writes, "I decided to investigate Community Care Corporation, a private psychiatric residential halfway house that one of the nurses at the hospital had told me about. I sought and gained admission to the program.

"The residential program was very different from the hospital. It was structured and supervised, yet I did not feel imprisoned and at the mercy of an arbitrary staff.… I sensed that the treatment team genuinely cared about me, and therefore I did not feel an ongoing need to test limits, as I had at the hospital.

"The residential treatment team… encouraged and even demanded my input in treatment. They considered me a partner in my own treatment rather than a less knowledgeable inferior. The mutual fear experienced by myself and the staff at the hospital was replaced by mutual acceptance.… Medication was used in the residential program as an aid in the recovery process. In the hospital it was too often used to sedate patients into submission.

"There were other differences as well. In the residential program, I was able to practice social skills in the safety of a community of peers and to learn skills by watching others practice.… The residential program expected me to take control of my life and led me to believe that I could. Staff attitudes were extremely important in building my confidence. In addition to recognizing and honestly addressing my weaknesses and problem areas, staff also pointed out my strengths and helped me make the most of them by teaching me specific problem-solving techniques and daily living skills.…

"The staff did not approach my treatment with a biased view of what I could accomplish, as I felt hospital personnel had done. Staff at this facility believed in my potential, and I began to develop confidence in myself. Gradually I became aware that I was my greatest asset."

Mismanagement of psychotropic medications

Betty Blaska (40) was a consumer specialist for the Wisconsin Consumer-Operated Services demonstration grant of the Wisconsin Coalition for Advocacy when her account was published in 1990.

"I am a consumer of mental health services—a 20-year veteran of the mental health system. Over the past two decades, I have had 13 psychiatric hospitalizations, have taken 18 or more different medications, have been a victim of electroconvulsive 'treatment,' and have had opportunities to talk to and suffer with psychiatric service consumers of all kinds, in hospital settings, in support groups, and in consumer networks. I know too well the grave errors that can be committed when psychotropic drugs are prescribed.…

"Being a moderate in the [mental health service consumer] movement, I believe psychotropic medications have a legitimate place in the array of treatment options. I am not antipsychiatry or antimedication. However, I have seen and experienced a great deal of abuse and many mistakes.…"

Ms. Blaska then outlines "seven common mistakes in prescribing medication for psychiatric patients."

"Mistake 1: Incorrect prescribing as a result of misdiagnosis.… I suffered from depression from age 12 through age 18. When admitted to a university hospital in 1969 at age 18, I acquired the labels 'schizoid personality' and 'schizophrenia.' After drug trials on Mellaril and Stelazine, side effects of akinesia and akathisia, worsened depression, and suicide attempts, I threw the pills out and went to a general practitioner—a nonpsychiatric physician—at the university student health clinic. Not mentioning my previous three hospitalizations, I told him that I was a little depressed and needed Elavil (that was what my hospital roommate had said helped her). And it worked! After six years of depression, I felt normal for the first time.

"That was back in 1969. But I'm dismayed to see that clinicians are continuing to misdiagnose today, with concomitant prescribing errors and refusal to reassess the diagnoses.…

"Mistake 2: Excessive dosages of medications. In my 20 years as a mental health service consumer, I have seen the suffering of people—too many people—who were loaded up on high doses of drugs. Excessive drug dosage usually results in side effects that may completely obviate the intended therapeutic effect.…

"I claim that the patient is the best authority on what dose is effective and what dose is too high. Allergies and chemical sensitivities seem to be fairly common among psychiatric patients, and it may be that the chemical sensitivity to psychotropic medications is especially acute. Because of this sensitivity, prescribers should routinely obtain detailed medication histories from the patient or the family.…

"Mistake 3: Too many drugs. Often when one medication does not help an individual immediately, psychiatrists add a second, a third, or even more medications to the regimen. It is not unusual to see people diagnosed as having schizophrenia prescribed two or three neuroleptics concurrently, and then of course prescribed medication for the side effects of the neuroleptics…. Polypharmacy is not inherently bad, but as an Alcoholics Anonymous dictum goes: keep it simple! In relation to psychiatric treatment that means the fewer the drugs, the better.

"Mistake 4: Downplaying side effects. It is always wise to take the consumer's complaints of side effects seriously.… I will never doubt a person's objections to drugs because of the harrowing days I spent on Mellaril and Stelazine. I know what it's like to want to die rather than take those drugs at those doses.

"Mistake 5: Overlooking the consumer's expertise.… The person with schizophrenia is the authority on his schizophrenia. The person with bipolar illness is the authority on her mood swings. No one should try to subvert these experts' testimony on their illnesses or on their reactions to drugs. Mental health professionals who do not approach a client in this light cannot help that client.…

"Mistake 6: Discouraging consumer education.… I count among the best the psychiatrists who encouraged me to learn more about my illness, to read the reference books and psychiatric journals, and to be knowledgeable about the drugs I was taking.…

"Conversely, there was the doctor who arrogantly brushed aside the articles I found on monoamine oxidase inhibitors and weight gain, saying he didn't need to read them. There were the ward nurses who wouldn't give me a pass to go to the medical library; they told me I 'knew too much already.' Finally, there was the resident who complained that I was 'trying to play doctor' by reading the psychiatric journals.…

"Mistake 7: The prescription-sheet relationship between psychiatrist and consumer. A prescription-sheet relationship describes what a consumer has with a psychiatrist who only prescribes drugs. Unfortunately, that's the relationship most of us consumers have with our psychiatrist. Economies of time and money have dictated that we see one professional for medications and another for therapy. Neither treats the 'whole person,' and neither is really able to do a great job of his or her half."

Ms. Blaska concludes, in part, "I applaud the court decisions that protect citizens' rights to accept or refuse medical interventions, including psychotropic drugs, if they are competent to understand the intended effects and the advantages or disadvantages. As long as there is no cure for psychiatric illness, as long as the biological theories are inexact, as long as drugs are an incomplete or imperfect treatment, as long as drug prescribing is still trial and error, and as long as clinicians continue to make mistakes in diagnosis and prescribing, we cannot humanely allow forced drugging.

"To deny mental health consumers participation in our own treatment decisions is to strip us of our rights as human beings, as citizens of a progressive and civilized society, and as adults. It is in denying this participation that psychiatry and society contribute to the stigma associated with being a 'mental patient.'

"Consumers are pressing for more rights. But we have the rights inherent in our citizenship in a free country. We need to assume responsibilities in line with those rights."

The Personal Account columns

The majority of the 34 contributors to this column since it began in 1994 are current or former recipients of mental health services. They identify themselves variously as patients, clients, or consumers. Some write primarily of their struggle to gain, or retain, the degrees of stability they have achieved, often with the aim of being better understood or accepted by others or of helping people who have similar disorders or difficulties. Many gently or forcefully point out deficiencies in their treatment or in the treatment system. Some of these authors now actively advocate for improved services, and a few have become, or are studying to become, mental health clinicians.

Other columns among the 34 have been written by relatives of patients with severe mental illness or by clinicians who are relating work or personal experiences. However, most of the authors cannot be classified simply as patient, or former patient, or clinician, or family member, or advocate, because they have more than one role.

Conclusions

The message in the three accounts featured here is clear: allow us to be partners in our own treatment and care. The message remains the same through many of the Personal Account columns published since 1994. However, in most cases it has changed from a request to be a partner in treatment to a declaration that the writer will indeed be a partner in treatment.

In some ways, the mental health scene is not as different as it might seem from what it was when Psychiatric Services began publication in 1950. Then, as now, psychiatrists and other mental health professionals worked to empower patients (41), although the term "empowerment" was not often used. Now individuals with chronic mental illness want to empower themselves.

This column will continue to publish first-person accounts with the intention of educating the professions—accounts that sometimes point out our successes, but more often highlight our missteps. Let us listen.

Dr. Geller is professor of psychiatry and director of public-sector psychiatry at the University of Massachusetts Medical School and its Center for Mental Health Services Research. He is also editor of this column. His address is Department of Psychiatry, 55 Lake Avenue North, University of Massachusetts Medical School, Worcester, Massachusetts 01655 (e-mail, [email protected]).