Dan Fisher, MD
After several days of frightening and fantastic imaginings, I retreated into silence, ruminating on the recent failure of a close relationship. I was unable to carry out my neurochemical research into the causes of schizophrenia at the National Institute of Mental Health (NIMH). It seemed irrelevant anyway. Why was I studying the chemistry of emotions when such impersonal research was not helping the personal pain I was experiencing? I spent a day alone at the zoo, feeling much too connected to the trapped and caged apes. I imagined I was the phenylalanine hydroxylase enzyme I had been studying in the lab. I could see the phenylalanine shooting towards me and, to avoid injury, had to quickly add oxygen to it to form tyrosine. My friends were unable to reach me, so my therapist recommended hospitalization. Frightened that they might be delayed indefinitely, my friends dropped me off in great haste at the Bethesda Naval Hospital emergency room with no identification and no possessions.
Each ER professional approached me with clipboard in hand. "What is your address? Who were the last 5 presidents in reverse order?" Every question seemed like an attack. They really didn't seem to care whether I was there or not, and I saw no reason to respond. Gradually they gave up and wheeled me into a corner.
Eventually, the lowest-ranking staff member, a corpsman, approached with curiosity and interest. He looked directly into my eyes, in a caring and steady fashion, for what seemed an eternity. His presence intrigued me enough to return his gaze. He smiled and observed gently, "You seem to be in a great deal of distress." He was the first person in some time who had taken the trouble to actually see the me inside.
"Hi, my name is Rick," he said. He seemed to be a real, genuine person. "Just nod if you can hear me," he entreated. I nodded and felt the possibility of connecting with him; however, I remained in a scared, nonverbal state for several weeks. I had trapped myself. I kept watching the expressions of each of the workers, looking for some reason to talk with them. I kept straining to recall any familiar trait to give me a clue about who these people were. Finally, another caring corpsman and I developed a sign language, which enabled us to communicate. During the next 3 weeks I came to believe I could trust him and felt that talking was worthwhile again. I had received chlorpromazine during that period, but the relationship seemed to be the essential trigger to reconnecting with the world; medication helped me pay more attention to the interpersonal world but by itself did not change my conviction that I still could not trust the people around me. Day in and day out, the corpsman instinctively believed in me with a caring and attention that reached inside to the hidden me and awakened my wish to reconnect to the world of people.
A Life-Altering Dream I was given a pass to visit my lab just across the road at the NIMH. I was so delighted to taste freedom that when asked after my return to the ward how I felt, on a scale of 1 to 10, I answered that I felt like "11." The staff promptly locked me in the seclusion room with only a tiny Plexiglas window in the heavy wooden door to the ward, and a heavily screened window to the outside. I was terrified. I was sure that the staff would leave me there forever. My fears were fueled by the indifference I observed among the staff visible through the window. I pounded on the door, but received no response. I longed for human contact, yet there was none. I slumped down to the cold marble floor, my spirit draining from me.
I vowed that if I ever got out, I would become a psychiatrist and try to ensure that no one else would be treated in this fashion. I would find a way to make certain that when someone was gripped by terror, people would reach out to them instead of secluding them. That sense of meaning and purpose has stayed with me for 35 years. That life-altering dream and sense of purpose are similar to the experience Dr. Victor Frankel described when he wrote on bits of paper while he was held in a concentration camp. He said that his dream of writing a book about his experience kept him going.
I grew faint and longingly stared out the screened window to the outside. I must escape, I told myself. Then I imagined I was a bird and saw myself fly through the window. I blacked out. When I came to, I was on the ward and remembered my dream. From then on, I made the compromises necessary to be discharged. Although some of the staff and other consumers helped me, I recognized that the real work would be outside.
Three months later, I was discharged with a bottle of haloperidol and a sheet of paper with my diagnosis written on it. The frightening word "schizophrenia" leapt off the page. "It can't be true," I thought. "I can't be schizophrenic."
Recovery and Residency Ironically, I had the dreaded condition I had been studying in the Laboratory of Neurochemistry across the road. I was disheartened but not deterred. Fortunately, my friends, therapist, and family did not treat me as if my life was over. In fact, my therapist always believed in me. When I told him of my dream to return to medical school to become a psychiatrist, he said he would be at my graduation. Indeed, 6 years later, he attended my graduation from George Washington Medical School.
Friends also played a pivotal role in my recovery. During a dark hour in medical school, I realized I needed both the support of friends and some fun activities in my life. I found a square dancing group and made some dear friends, many of whom I am still close to now, 30 years later. I was always shy by nature, and the rhythm of dance made meeting friends easier. The magic of dance also led me to my future wife.
My recovery was also assisted by my work as a peer coach for people in acute emotional distress who came to a free clinic. By helping them through their distress, I came to understand more about myself. When I received the diagnosis of schizophrenia, I felt my ability to make a contribution was destroyed. Through sharing myself, I again felt valuable and reconnected to the human race. This may be the basis of helper therapy or the therapeutic effects noted by Reissman when people help others.
Professionally, my biggest challenge was my psychiatric residency. I did not disclose my psychiatric experience to the training program at Cambridge Hospital, though I think they could tell I was struggling at times. I struggled to keep my anger in check when the therapeutic interventions were in conflict with what I had learned was important from personal experience. For example, I had learned that there is always a person inside who can be reached, no matter how much distress a person is in. That person may be mute, but is watching and listening to every word and each intonation of the people around him or her. Trust is crucial to reaching that person inside; forcing medication against a person's will ruptures trust. In one case, I tried to reach a mute client by sitting with her, reassuring her, and giving her food, but not forcing medication. She had been hospitalized frequently in the past, and my supervisor ordered me to medicate her.
He confronted me repeatedly in rounds. "Why are you not medicating this patient?" I replied that I was building trust. He laughed, "Building trust! That is ridiculous. The treatment of choice is 400 mg of Thorazine." Even though I had made great progress in reaching the mute woman, after a few days, I backed down when it appeared I would be terminated from the training program. Later the woman thanked me for the several days I spent reaching out to her and building trust, and she required hospitalization only infrequently after that.
The Therapist's Therapist My personal experience has helped me to reach very disturbed individuals in many other ways. I have always believed that a strong core of strength dwells inside each person, no matter how deeply upset he or she is. A therapist must always remember this core of power and be with the person in a manner that conveys confidence so that the patient can draw on his or her hidden strength. Edward Podvoll describes this method of being with someone who is in another reality as basic attendance. He states that "even though your regular channels of communication with him are cut off, you can still work with his pinpoint of sensory energy. You do not try to wake anyone up (this has been a frequent mistake); you simply relate to his spontaneous wakefulness whenever it occurs." Another therapist who saw the core capacity in even the most disturbed individuals was Harold Searles, who says, "The more ill the patient is, the more does his successful treatment require that he become, and be implicitly acknowledged as having become, the therapist to his officially designated therapist..."
Clients we have interviewed describe this relationship as being with "a person who believed in me." This attitude is conveyed through direct, open, and spontaneous communication, a way of interacting that seems to be "trained out" of many professionals. Nearly every one of these mental health consumers concurred that they received their best help from the least trained staff in hospitals. This may reflect the natural human tendency to interact with the humanity in another person, a tendency that is impeded by too much attention to theories.
Constructing Recovery Recently, a consumer I have treated for many years came to my office in great distress. Although he had made steady progress in getting in touch with his feelings, he was convinced he was getting sick again. He paced, saying he couldn't stay, and avoided looking at me. I looked him directly in the eye, briefly getting his attention, and said with a conviction based on experience that he was capable of facing the feelings he was experiencing. He looked surprised, but intrigued. "But I have never had these feelings before," he complained. "I must need new medication." His medication was at a good level, and I reassured him of that. I told him that a peer of his, whom he respected, recently described the role of medication in his recovery as follows: "The medication forms the foundation while I construct the house of my recovery."
I reinforced that he had to make an active effort to build a deeper understanding of himself. I told him he was feeling the anxiety that is part of living for everyone. He calmed down and began to engage in direct conversation. I told him I had confidence in his ability to continue his recovery. His confidence grew and he stayed. He then shared that he had been thinking about his father, whose death 1 year prior had been very upsetting. He just needed reminding that what he was experiencing was not a part of his illness, but part of his recovery and healing. If I had not understood that there is always a person inside whose capacity to recover can be elicited, I would have agreed with his assessment that his agitation was from his illness and beyond his control. That line of reasoning would have led me to add another medication. This lack of confidence in the consumer's capacity to take charge of his or her recovery contributes to the upsurge in polypharmacy.
I also try to remember that I felt the best when people talked to me as they would to a person who was not labeled mentally ill, when people treated me as a fully functioning person even though I did not appear to be fully there. This attitude and approach is crucial for overcoming stigma and discrimination. At a deeper level, it helps overcome the sense of being discredited and devalued, which is conferred by the label of mental illness.
For 30 years, I have provided psychiatric care to mental health consumers in hospitals and clinics. During this period, I have also been part of the consumer movement. The tension of seeing and feeling both of these often antagonistic sides of the system has been painful yet rewarding. By working intensely with providers, families, and consumers, I have learned to translate their worlds to each other. I have found that recovery is the common ground uniting these groups. To reach this common ground, psychiatrists had to stop believing that remission was the best anyone could hope for, and parents needed to understand the importance of their children gaining greater autonomy. Consumer leaders had to accept that there is something fitting the description of mental illness for which they need assistance.
New Freedom Commission on Mental Health My efforts to bring these worlds together were rewarded in 2002 when I was appointed to the White House New Freedom Commission on Mental Health (www.mentalhealthcommission.gov). In that role, I represent the millions of consumers who are hoping for a brighter future, and together with their families and the commissioners, we have formulated the New Freedom Commission Report on Mental Health vision statement: "We envision a future when everyone with a mental illness will recover."
We established the major goal of transforming the mental health system from being a maintenance, symptom-reduction system to a consumer and family-driven, recovery-oriented approach to care. The Commission recommends that consumers and families fully participate in training, policy development, service evaluation, and service delivery. That report has fed the dreams of consumers and families across this country and around the world. The Commission has also recommended that the system work to reduce the practices of secluding and restraining patients.
I am often asked to share my life story because not many people recover from schizophrenia and become psychiatrists. Clinicians want to know if I have fully recovered. This question has forced me and others in the field to define recovery from schizophrenia. This is a new research area; until recently, most people considered recovery from schizophrenia (or most other forms of severe mental illness) improbable.
Through studies of other peoples' recoveries and my own, and through research in the field, the National Empowerment Center has formulated 7 dimensions of recovery. Below is a description of people with schizophrenia in each dimension:
Decision making: Impaired; swinging from the extremes of believing one's decisions must be made only by others or only by oneself because the individual is unaware of how he/she feels about important issues
Network of friends: At most has a very narrow circle of emotionally superficial acquaintances
Major social role (such as student, worker or parent): Generally not able to maintain such a role
Medication use: Essential for daily functioning
Emotional and social intelligence: Poor capacity to understand and express oneself on the social/emotional level
Global Assessment of Functioning (GAF): Below a 61, meaning that even most untrained persons would consider him or her sick
Sense of self: Very poorly developed, little hope for the future, little sense of purpose, and a perception of self defined by others; lacking self-direction, self-confidence, etc.
Frequently, when a person with schizophrenia is treated within the mental health system, his or her sense of self becomes defined by the system as a person with a limited future. Thus, recovery in this setting entails recovery from the original condition as well as recovery from the role of consumer.
Table 1 compares characteristics of persons with schizophrenia with characteristics of those who have recovered in each of these dimensions.
Table 1. Comparison of Persons With Schizophrenia and Those Who Have Recovered
|Person With Schizophrenia||Person Who Has Recovered From Schizophrenia|
|Decision making||Professionals need to make major decisions = dependent||Capable of making decisions for oneself = self-determining|
|Major social supports||Mental health system provides social supports||Network of friends provides major supports|
|Social role/identity||Consumer, a schizophrenic, or mental patient||Person who is a worker, parent, student, or is assuming another role|
|Role of medication||Considered a requirement||One tool among many chosen by the individual|
|Emotional intelligence||Strong emotions are symptoms to be treated by a professional, not learning communication on this level||Person expresses and works through emotions by self or with friends, learning to communicate on that level|
|Global Assessment of Functioning (GAF)||Score of 60 or below: untrained person would describe labeled person as sick||Score of 61 or above: untrained person would describe the recovered person as not sick (normal)|
|Sense of self||Weak, defined by people in authority, little sense of a future, little inner direction||Strong, defined from within and by peer interactions, strong sense of purpose and a future|
Long-term research by Harding, Ciompi, Bleuler, and others has shown that a majority of people recover significantly or completely from schizophrenia.[7-11] The researchers defined complete recovery as being without symptoms, off psychotropic medication, living independently in the community, working, and relating well to others, with no behaviors considered odd or unusual. Harding has reviewed 5 additional, more recent, worldwide studies, which reinforce these earlier findings. The researchers defined consumers as significantly improved when they fulfilled all but 1 of the domains (Table 2).
Table 2. Long-term Studies Showing That People Recover From Schizophrenia Study Sample Size (N) Follow-up (yrs) Recovered and Significantly Improved (%) Bleuler (1974) 208 23 68 Huber et al (1979) 502 22 57 Ciompi (1988) 289 37 53 Tsuang et al (1979) 186 35 46 Harding et al (1987) 269 32 68 Total 1454 Average = 30 Average= 58
Health Policy and Recovery To answer the question of the influence of state mental health policy on recovery, Harding and colleagues compared the recovery rates in Vermont with those in Maine. These 2 states formulated distinctly different mental health policies in the 1950s and 1960s. Vermont created a very innovative approach that emphasized rehabilitation, community integration, and self-help. Maine focused on symptom reduction and maintenance. The recovery rates were strikingly different. In all dimensions, Vermont boasted a significantly higher recovery rate. The investigators carefully matched the sample of subjects in the 2 states. They concluded that the major reason for the higher recovery rate in Vermont was the result of a social policy that emphasized hope, rehabilitation, and a belief that each person, regardless of the severity of his or her condition, was capable of living a full and independent life in the community.
Empowerment Principles of Recovery How do people recover from schizophrenia? To answer that question, the National Empowerment Center (NEC) has been conducting a qualitative study of people who were severely mentally ill and have met the criteria of recovery cited above. These studies have revealed 10 major principles of how people recover.[14,15]
Trusting Oneself and Others The element of trust is described by Eric Erikson as the fundamental first step in any major developmental step in life. Erikson called this basic trust, because of the need for establishing it at the deepest level. During periods of severe emotional distress, many people withdraw emotionally from those around them, and also from themselves. This withdrawal is probably part of a primitive survival mechanism called conservation-withdrawal, such as when fright causes an animal to go into a state of paralysis. In humans, this kind of withdrawal poisons relationships and can evolve into paranoia if left unchecked.
Trust can be reestablished by interaction with consistent, caring, empathetic persons over time -- the glue of human relationships. Face-to-face interactions are vital to build trust because emotions are communicated more effectively through nonverbal than verbal communication.
Valuing Self-Determination Self-determination is almost uniformly cited as vital to recovery. Self-determination is the difference between a person managing his or her own life vs relying on others to manage it. Dr. Harry Stack Sullivan expressed the centrality of the person's own initiative in recovery when he said that if the reorganization of a person's psyche during early psychosis "leads the patient to the foreconscious belief that he can circumvent or rise above environmental handicaps, and if this belief is the presenting feature of a comprehensive mental integration, his recovery proceeds."
Unfortunately, when people make bad decisions, the mental health system becomes responsible in society's eyes for their decisions, interfering with the development of confidence in one's self. Furthermore, the lack of an understanding of one's own feelings makes it difficult to make decisions in line with one's true self.
Believing You'll Recover and Having Hope Emotional crises sever one's sense of existing through a durable past, present, and future. Instead, durability is replaced with a series of fleeting moments that could easily be blown away. It is essential that people in distress be able to temporarily borrow a sense of more permanent existence from the people around them. This relationship also allows one to borrow the hope of having a future. In this context, it is particularly sad that many well-meaning mental health workers paint a bleak future, when exactly the opposite is what is sorely needed.
Believing in the Person's Full Potential Many participants in our study emphasized the importance of having someone who "believed in me." All independently reported having at least 1 person like this. Often, the less trained staff members, such as residential or rehabilitation workers, were the ones who communicated this level of belief in the person. One subject said he could detect "belief signals" from the people who understood him. "These were people who believed in my capacity to get a life, to take responsibility, and to change."
Harding also cites this dimension of relationships as vital to recovery. The consumers in her Vermont study "reported they received the greatest benefit when they were told that someone believed in them: 'Someone believed in me, someone told me I had a chance to get better.'" To Harding, this illustrated the importance of hope and showed that hope was connected to the natural self-healing capacities of people.
Connecting at a Human, Deeply Emotional Level Those who recovered had connected with mental health professionals at an emotional level rather than seeing them as authority figures. One person described her therapist as human, fallible, open to correction, and not god-like. Another person emphasized the importance of humor. It was very important that his caregiver "would keep me laughing when I saw him...he made me laugh." The importance of these connections is highlighted in the peer support literature, which shows that peer support reduces symptoms, enlarges social networks, and enhances quality of life.
Appreciating That People Are Always Making Meaning Dr. Bertram Karon provides a good example of "making meaning" in a description of the therapy he used to treat a man diagnosed with schizophrenia. One of the man's symptoms was frequent bowing. When Dr. Karon asked the man why he was bowing, the man said that he was not bowing. The therapist demonstrated the bow and said, "But you do this and this is bowing." The man repeated, "I don't bow."
When Dr. Karon asked what he was doing; the man replied, "It's balancing." Dr. Karon asked, "What are you balancing?" The man replied, "Emotions." Dr. Karon asked, "What emotions?" The man replied, "Fear and loneliness." When he was lonely he wanted to get close, so he leaned forward. But then the leaning forward got him too close to people and he pulled back by straightening up.
Having a Voice of One's Own When people lack a voice and a sense of self, they are more likely to experience severe emotional distress. One subject said that her paranoia disappeared when she was able to speak up to her boss regarding her concerns on the job. Additional research has shown that people are able to learn to cope with hearing voices when they feel stronger than their voices, have more of a voice in their social environment, and are able to discuss their voices more readily with others.
Validating All Feelings and Thoughts During one of my most distressed periods, I spent an incredible day with a friend who supported me in an exquisitely validating fashion. She was able to spend time with me without judging me. Later she told me that there were things I said while I was in distress that did not make sense but I was a good friend so she felt it was important to be with me. She trusted me and still does.
Following Meaningful Dreams One person, who had experienced many, frequent hospitalizations, reported that pursuing her dream of helping other people had made the difference in her life. She now felt she had a reason to get up in the morning and that she had a purpose in her life. She has become a residential counselor and has not been hospitalized in several years.
Dr. William Anthony has emphasized that setting goals that reflect the person's own dreams is a core value in psychiatric rehabilitation. The need for medical patients to play a central role in their treatment has also been cited recently in the Institute of Medicine Report, Crossing the Quality Chasm.
Relating With Dignity and Respect One participant stated, "The key ingredients for me on my journey to recovery are being treated with dignity and respect, having a mentor, using peer support, and knowing people who really understand and who have been there." Another person spoke of a doctor who meant a great deal to him: "He respects everyone, no matter who they are."
The Empowerment Model of Recovery. Given the right mix of relationships, attitudes, and resources, people with mental illness can fully recover by (re)gaining control of the central decisions of their lives, learning to live with intense emotions, and developing the skills and relationships they need to establish a major social role. This model consists of 3 different experiences that can occur in response to distress: healing, transformation, and recovery.
Healing From Emotional Distress. According to this model, most people begin life at the right side of the diagram (Figure), balanced and whole. However, we all suffer trauma and loss, which lead to emotional distress and feelings of fragmentation and of not being whole. Through coping strategies and social supports, most people are able to heal emotionally and indeed develop a stronger sense of self.
Transformation From Severe Emotional Distress. Sometimes a major trauma or loss, such as a failure to adapt to college or the loss of a loved one, can lead to severe emotional distress. At that point (Figure, top) it is crucial that sufficient noninstitutional supports and coping strategies are available to allow the person to heal. During this period, it is also vital that people retain their connections with their community and maintain as much control over their lives as possible. The presence of these elements enables the person to undergo a transformation that may involve a reorganization of his or her sense of self at a deep level. This transformation can allow the person to be more resilient during future stress and trauma. In her book, On Our Own, Judi Chamberlin described such a transformation at a crisis respite center run by people who had themselves gone through similar experiences.
Recovery From Mental Illness. In the absence of supports, including supportive people, adequate and appropriate housing and finances, and coping strategies, the person's life goes out of control. Without sufficient alternatives, control of a person's life is taken over by institutional mental health systems and programs and the person is labeled "severely mentally ill." When a person is labeled mentally ill, he or she must recover not only from the severe emotional distress that led to that state, but also from the role and identity of a person with mental illness. The label not only relegates people to a low status and diminished rights, but it also eats away at a person's confidence and initiative to pursue dreams and to lead a full life of his or her own choosing.
People can and do recover from even the most severe forms of mental illness, such as schizophrenia and bipolar disorder. However, the time and resources involved are much more extensive than for those who have received supports sufficient to help them go through transformation. Survivors have united around the goal of genuine recovery as outlined in this Empowerment Model.
Conclusion The concept of recovery is quite different from that of remission or rehabilitation. Remission and rehabilitation are not the major goals of consumers today. Remission means the absence of symptoms while the person remains mentally ill. As the New Freedom Commission report stated, people should recover a full life, not simply achieve symptom reduction. Similarly, rehabilitation, although a useful component of recovery, is only a portion of recovering a life. Rehabilitation means that an individual can learn to function in society and still remain mentally ill, in the same fashion as a person with a spinal cord injury can. However, mental illness is reversible.
NEC and other groups are diligently working to implement the transformation to a recovery-based system recommended by the New Freedom Commission. Toward that end, NEC has developed an educational program called PACE (Personal Assistance in Community Existence)[6,14,15] to help shift the culture of mental health from institutional thinking to recovery thinking.