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Summer 2009 | Vol 12 No 4

Focus

Hope in recovery

There is life after a diagnosis of mental illness

By Chris Summerville

For many, learning that one has schizophrenia is like receiving a “kiss of death” diagnosis. The history of our understanding – or lack of understanding – about severe mental illnesses like schizophrenia is, for the most part, encapsulated in this grim sentence handed down by psychiatrists and others – “poor prognosis with progressively downhill course.” The DSM-IV, the standard tool for diagnosing schizophrenia and other mental illnesses in North America, describes the illness with such dark, devastating language that it is easy to think that any sense of hope is a delusion.

But for most people, schizophrenia does not seem to be an illness of slow, progressive deterioration. Researchers have found that even in the third decade of illness, the potential for full or partial recovery remains. For the past 25 years, people with mental illness have been sharing their stories of their struggle through and recovery from or in mental illness. As one woman with schizophrenia recently told me about her recovery progress, “It’s like a resurrection!”

These words capture the essence and hope of the recovery model. This model is being embraced at the national level, where the Mental Health Commission of Canada (MHCC) recently completed its first round of consultations for a mental health strategy, proposing that the first guiding value or principle be “The hope of recovery is available to all.” Canadians are finally discussing the concept, which has been realized in the recovery-oriented mental health strategies of countries like New Zealand, Australia, Scotland, England and the United States.

At the heart of the recovery movement lies an emphasis on the individual’s potential growth, a shift from the pathological focus of the prevailing medical model. That potential is developed by integrating medical, psychological and psychosocial interventions in the context of family and community support. Functional outcome, not merely symptom relief, must be the clinical focus in schizophrenia treatment.

According to William A. Anthony, a guru of the recovery movement and executive director of Boston University’s Center for Psychiatric Rehabilitation, “Recovery is a way of living a satisfying, hopeful, and contributing life even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”

Although many people do not like the word “recovery” because it implies a cure, it is used in the literature and by people with mental illness. Some people don’t use the word because their health care providers don’t use it or don’t talk about the possibility of recovery.

But recovery is real. It includes personal, social and illness-related dimensions. Personal recovery is about acceptance and regaining purpose and meaning in life as one comes to terms with mental illness. Social recovery involves social inclusion – living a safe, full, dignified life in the community with appropriate supports and services. Illness recovery means illness management using your own “personal medicine,” for example, stress management techniques, support groups, meditation or yoga and medication. Fundamentally, recovery is about recovering a quality of life.

As the sibling of a brother with schizophrenia and another with bipolar disorder, as the son of a father who died by suicide, and as someone who has worked for 15 years with people affected by schizophrenia and psychosis, I argue that recovery should be the expectation, not the exception, in mental health care. Services must be oriented to the single most important goal of the people it serves – the hope of recovery. Our recent quality of life survey emphasizes this goal.

Recovery is not another program or intervention that we “do” to clients. Our role is to create environments in which recovery can take place.

What then is the role of service providers and family members? We don’t do the recovery work; that is the individual’s responsibility. Recovery is not another program or intervention that we “do” to clients. Rather, our role is to create environments in which recovery can take place. Supporting recovery is what the system and community do. This requires changing the health care paradigm – imparting a message of hope and belief that recovery is possible, redesigning services to support recovery, shifting from a focus on symptom reduction to supporting meaningful engagement and roles, building collaborative partnerships, and establishing different measures of success that include enhanced quality of life.

Ultimately, to understand the recovery model, we need to understand what it is that people with mental illness are recovering from: the illness; medication side-effects; non-recovery oriented mental health systems; trauma; stigma and discrimination; learned hopelessness and helplessness; co-occurring disorders; and lack of access to comprehensive, co-ordinated, continuous treatment options; as well as the loss of self, goals, social relationships, friends and family, income and housing and adequate community supports and services.

If we are serious about the vision of recovery, then the mental health system, which has been characterized by low expectations, control and no consumer-based vision, must change. Service providers must not focus their hopes on a “pill”; rather, they must listen to their clients. It is they who will tell us what helps and what hinders their recovery.

Chris Summerville is CEO of the Schizophrenia Society of Canada, executive director of the Manitoba Schizophrenia Society and a board member of the Mental Health Commission of Canada.