I’m currently reading this book:
Warning: very long, take a while to read this if you can.
And in its chapter called “Recovery from schizophrenia” it says:
"The term recovery means different things to different people. Some people view it as an outcome or a goal, similar to recovery from a medical illnesses, with permanent elimination of symptoms. In recent years, however, recovery has started to be viewed as a process that occurs independent of specific symptoms and impairments.
Recovery as a Medical Outcome
In conventional medical terms, recovery means no longer having the symptoms or related problems of the illness and being no more vulnerable to experiencing the illness in the future than anyone else—such as when someone recovers from pneumonia. In relation to schizophrenia, this would mean no longer hearing
voices, having delusions, or experiencing negative symptoms, no longer having trouble holding down a job, and not being vulnerable to relapses or rehospitalizations.
As one person with schizophrenia said, “Not having symptoms anymore is my definition of recovery.”
Extensive research has provided compelling evidence that medical recovery from schizophrenia occurs in significant numbers of people and that many others improve substantially over time. The bar graph below shows that 42–68% of people with schizophrenia experience a full recovery or substantially improve
over their lives.
Not surprisingly, scientists have also tried to understand why some people achieve such improvements. Robert P. Liberman, MD, and his colleagues at UCLA compared a group of people who currently experienced the symptoms and impairments of schizophrenia with a group of people who had recovered.
Recovery was defined medically as not having any significant symptoms for the past 2 years; being employed at least half-time for the past 2 years; living independently and being able to manage money, shopping, food preparation, and personal hygiene; and being regular interactions with a friend, acquaintance (not family), or spouse. As shown in the table on page 34, 10 different factors were
found to be related to recovery. This does not mean that every person who recovered from schizophrenia had every one of those factors working for him; rather, it means that the greater numbers of factors a person had, the more likely he was to recover.
To the extent that you can control the factors that contribute to it, medical recovery is certainly a goal worth pursuing. But many people with schizophrenia and their relatives would argue that it’s preferable and more helpful to think of recovery as a process than as a single outcome. That’s because medical recovery can span decades, even a lifetime. It’s difficult for many families to keep going with their eyes on such a distant, often elusive, goal. Recovery as a process, on the other hand, keeps your eyes trained on shorter-term achievements that may actually bring more meaning to everyone’s life than recovery in the strictly medical sense.
Recovery as a Process
Viewing recovery as a process rather than an outcome is a major shift in thinking that has provided many people with a renewed sense of hope and optimism, largely because it involves focusing on goals and aspirations instead of symptoms and limitations. When you focus all your efforts on overcoming a major illness, you make yourself responsible for an outcome over which you don’t have total control—a demoralizing and depersonalizing prospect. The process view of recovery, on the other hand, allows you to focus on making whatever difference you can in your daily experience of mental illness, its consequences, and related hardships.
Patricia Deegan, who has written extensively about recovery based on her personal experiences and those of others, wrote:
Recovery is a process, a way of life, an attitude and a way of approaching the day’s challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, regroup, and start again. . . . The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work, and love
in a community in which one makes a significant contribution. (1988)
One of the most widely cited definitions of recovery was provided by William Anthony, the influential founder and director of the Boston Center for Psychiatric Rehabilitation, who described it as a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.
Paul Carling, quoted below, helped to establish a vision of recovery that is oriented toward the values of community care for individuals with psychiatric disorders:
Recovery involves a shift in consciousness of giving up the “sick” label, of seeing oneself, at core, as neither patient, nor even psychiatrically disabled, but as a unique individual with aspirations, strengths, and challenges, in short, a person in recovery.
Themes of Recovery
Common across all conceptions of recovery is the recognition that the person with the mental illness, and no one else, has the right to define recovery. Although definitions of recovery vary, a number of themes emerge:
Hope
Above all, hope is widely agreed to be the most fundamental ingredient of recovery, for without hope there can be no effort to rise above one’s disability and to tackle the many challenges life offers. The importance of hope is underscored by the fact that people with mental illnesses have been often told that there is no cure for the illness, it is chronic, medication must be taken for life, and therefore there is no hope for recovery, for normalcy, or for a quality life. Such messages can deal a devastating blow to the individual, leading to resignation and moral defeat. No one, including mental health professionals, relatives, or “experts,” can accurately predict the future of someone with schizophrenia (although many
have tried!). The reason the future cannot be predicted is that it has not been written, and it is up to the person, with the help of family, to decide what her future will be.
Esso Leete, who has written eloquently about her experience of coping with schizophrenia, put it simply: “Having some hope is crucial to recovery; none of us would strive if we believed it a futile effort.”
Empowerment and Responsibility
The concepts of recovery and empowerment have been intertwined since the earliest writings on the topic. Empowerment involves taking control of one’s life, including the treatment of one’s mental illness, and moving away from traditional hierarchical relationships with mental health professionals to collaborative
ones based on shared decision making. Many people with mental illness have bitter memories of losing control over their lives when others have stepped in; they lost their voice, their freedom, and respect. Experiences with coercive interventions, such as involuntary hospitalization and pressure to take medication, lead to a mixture of feelings such as fury and resignation. The sociologist Althea
McLean describes how such experiences with mental health treatment led to the emergence of the empowerment movement:
Empowerment was evoked as a means to correct those violations and the pervasive
debilitating consequences of their encounters with the mental health system. Thus,
empowerment came to mean self-determination and control over their entire lives,
not only their treatment. Empowerment does not come without responsibility, however, and accepting
responsibility for personal self-care is a critical part of recovery. Taking responsibility for oneself involves the development of better skills for self-managed care. Dr. Daniel Fisher, the Director of the National Empowerment Center, has written, “Self-managed care draws on the power of each individual to direct their
own healing.”
The truly empowered person has the right to make choices and to bear the consequences of those choices, even when others may disapprove or disagree, be they professionals, friends, or families. Truly respecting that people with mental illness are independent people means allowing them to have the dignity of risk, including the possibility of failure, without always trying to protect them from the consequences of their decisions. Clay writes:
The person most likely to get well—to become empowered—is the person who feels free to question, to accept or reject treatment, and to communicate with and care for the people who are caring for him. . . . Ultimately, patient empowerment is a matter of self-determination; it occurs when a patient freely chooses his or her own path to recovery and well-being. (quoted in Ralph)
Meaning and Sense of Purpose
The hopes and dreams of people with schizophrenia and other mental illnesses have often been dashed by the “slings and arrows of outrageous fortune”—their mental illness—resulting in a demoralized, passive acceptance of their lives. Out of fear of more disappointment, people stop pursuing their dreams and visions and settle back, watching their lives go by. Recovery involves regaining a sense of purpose in one’s life.
Meaning and purpose are naturally defined by each person. For some people, they are found in being good parents, spouses, students, or employees.
Meaning is multifaceted, and people can have many different activities in their lives that contribute to their sense of purpose. Advocating for social change, working at a peer support agency, becoming involved in the creative arts, being a mother, doing volunteer work, and caring for animals are just some examples of
ways people create meaning and purpose in their own lives. One person with a mental illness stated about her job:
I have to know that I am doing something that is meaningful for me, whether it is teaching kids or doing social change. If it is not personal at all, I couldn’t do it. I always created my own job. (quoted in Provencher)
People need to be encouraged to define what is meaningful to them personally. Societal definitions of “adjustment” or “independence” should never take priority over people’s own beliefs. Patricia Deegan warns of the hazards of rehabilitation programs that fail to help individuals develop their own meaning and
sense of purpose in their lives and instead focus on traditional values defined by society:
For some psychiatrically disabled people, especially those who relapse frequently, these traditional values of competition, individual achievement, independence, and self-sufficiency are oppressive. Programs that are tacitly built on these values are invitations to failure for many recovering persons. For these persons, “independent living” amounts to the loneliness of four walls in the corner of some rooming house. For these persons, “individual vocational achievement” amounts to failing one vocational program after another until they come to believe they are worthless human beings with nothing to contribute. (1988)
Social Connection
Humans are naturally social creatures. Developing a mental illness can have a devastating effect on one’s relationships with others and integration into the community. Close relationships are important in everyone’s lives, and a common goal of people with mental illness is to establish closer relationships or to
improve their quality. Shery Mead and Mary Ellen Copeland write of the importance of relationships with others and how people with psychiatric symptoms are able to connect with others:
We are successfully establishing and maintaining intimate relationships. We are good parents. We have warm relationships with our partners, parents, siblings, friends and colleagues. We are climbing mountains, planting gardens, painting pictures, writing books, making quilts, and creating positive change in the world.
Dan Fisher notes that integration into society is a critical dimension of recovery, and he distinguishes this recovery approach from other approaches to working with people who have mental illness: Self-managed care is consumer-directed, multi-level, strength-building planning to genuinely assist a person to gain a meaningful role in society. This planning is contrasted to maintenance-based treatment planning which by its nature is professionally directed to correct pathology. (quoted in Ralph)
Many people with schizophrenia gain social connection, as well as a sense of purpose, through involvement in peer support groups (people with a mental illness meet and provide support to one another). Peer support, by its very nature, is nonhierarchical, and people report deriving great satisfaction from the process of helping others and from the help they receive in their equal relationships with others. Two people wrote of participating in peer support as follows: It brings companionship and a feeling of equality and respect. I am treated as an equal and as a competent person. That helps me to feel better about myself, and less depressed. (quoted in Provencher)
I like working in a program like this because it makes me feel like I’m doing something not just for me but for other people, and to me that’s important. Earning money isn’t so important in its own right. It helps me feel good about myself, and I know that I’m contributing to help other people. (quoted in Provencher)
Coping
People with schizophrenia and other mental illnesses often view recovery as the process of putting their lives back together through hope, meaningful activities, connections with others, and reintegration into their communities. However, the pursuit of these goals requires effective coping with symptoms and related problems. Coping is a “take charge” approach to problematic symptoms—it is the opposite of giving up. Coping efforts can be effective at changing the disturbing symptoms themselves, but more important, they are aimed at reducing the negative effects of symptoms on mood, behavior, self-confidence, enjoyment of life, and ability to pursue personally important goals. Esso Leete described the importance of coping with her schizophrenia in the following way:
More than any other one thing, my life has been changed by schizophrenia. For the past 20 years I have lived with it and in spite of it—struggling to come to terms with it without giving in to it. Although I have fought a daily battle, it is only now that I have some sense of confidence that I will survive my ordeal. Taking responsibility for my life and developing coping mechanisms has been crucial to my recovery.
Coping is a broad concept. The inspiration and strategies for more effective coping can come from multiple sources, including the experiences of others with similar symptoms (as described in writings and peer support programs), family members, friends, religious or philosophical sources, or one’s own creative
mind. Directly addressing disturbing symptoms such as auditory hallucinations can be empowering in and of itself, as described by Patricia Deegan:
The good news is that we no longer need to be alone and isolated with our voicehearing experiences. We do not have to be passive victims of distressing voices. We can take a stand, find our own voice, and do something to help ourselves overcome distressing voices and reach our personal goals. (1996)
Personal lifestyle choices are another way of coping with the stress and symptoms of mental illness. These choices include a wide range of possible activities, such as exercise, meditation or prayer, involvement in the creative arts (writing, painting, acting), cooking, and socializing with friends and family. These activities are coping strategies because they help to bring much-needed balance into people’s lives, provide opportunity for reflecting and processing personal experiences, and can reduce stress, energize, and strengthen feelings of well-being, inner peace, and optimism."