Introduction of the notion of remission represents a significant step away from the field's historical pessimism. Practitioners can convey hope that relief from the symptoms and functional impairments associated with schizophrenia is not only possible but also is obtainable by many people over time. But for many patients and families concern continues that this notion does not go far enough in conveying the optimism generated by longitudinal research. As noted by members of the working group, remission implies that the person is not yet recovered but remains vulnerable to relapse or recurrence. It represents, at worst, a tenuous hold on a temporary period of diminished illness severity or, at best, a stepping stone on the way to a fuller and longer term period of sustained recovery. Unless the concept of remission likewise is taken to be a transitional step for the field on the way to development of a concept of sustained recovery, then it will fall short of satisfying the demands of patients and their families.
Of course, it is not incumbent upon medical science to heed the demands of political movements. What is worthy to consider, however, is the experience base of patients and their families which has led to their developing a more positive approach to schizophrenia. These experiences, which were given voice in the Surgeon General's report11
and the report of the President's New Freedom Commission on Mental Health,8
have led to at least 2 understandings of recovery in relation to schizophrenia. The first described as recovery “from” schizophrenia is consistent with the conceptualization of recovery introduced by the remission working group, in which a person becomes “relatively free of disease-related psychopathology” and is able to “function in the community” over a prolonged period of time.7(p442)
A few leading authorities in the field, such as Liberman and colleagues,12
have gone so far as to propose a set of operational criteria for this phenomenon, which, as noted above, occurs for between 20% and 65% of a given sample who are found to be symptom free and independently functioning at follow-up.
Because this sustained form of symptomatic recovery happens primarily outside of clinical settings, however, this form of recovery continues to have little reality for many practitioners. Indeed, such practitioners and scientists may scratch (or shake) their collective heads when they read position statements such as those found in the President's New Freedom Commission's final report, that “recovery… is now a real possibility…for everyone.”8(p1)
If this is the form of recovery to which such documents refer, then they are not supported by existing data and appear instead to represent empty political rhetoric because, at least for the foreseeable future, not everyone with schizophrenia will achieve this form of recovery. While post-Kraepelinian pessimism is no longer warranted, neither is a Pollyanna-like optimism that everyone will recover from schizophrenia.
What is missing in this argument is that the policy documents which preceded and followed the President's New Freedom Commission are political—not scientific—documents. Furthermore, they are not referring to this narrow, medical form of recovery. They are referring to another perspective on recovery which we describe as being “in” recovery.13
This concept does not have as much to do with level of psychopathology as with how a person manages his or her life in the presence of an enduring illness. This form of recovery has been identified and described in various ways by mental health consumer advocates, psychiatric rehabilitation practitioners, and researchers.14–18
Where all contributors seem to agree that this form of recovery refers to a unique and personal process rather than to a uniform end state or outcome and that it involves a person's self-determined pursuit of a dignified and meaningful life in the communities of his or her choice. The New Freedom Commission defined this form of recovery as “the process in which people are able to live, work, learn, and participate fully in their communities” and acknowledged that “for some individuals, recovery is the ability to live a fulfilling and productive life despite a disability.”8(p5)
Similarly, the American Psychiatric Association issued a position statement on the “use of the concept of recovery” stating that:
The American Psychiatric Association endorses and strongly affirms the application of the concept of recovery to the comprehensive care of chronically and persistently mentally ill adults … Th[is] concept … emphasizes a person's capacity to have hope and lead a meaningful life … [and includes] maximization of 1) each patient's autonomy based on that patient's desires and capabilities, 2) patient's dignity and self respect, 3) patient's acceptance and integration into full community life, and 4) resumption of normal development. The concept of recovery focuses on increasing the patient's ability to successfully cope with life's challenges, and to successfully manage their symptoms.19
With its focus on “chronically and persistently mentally ill adults” who have an ongoing need to manage symptoms, this position statement cannot liken being in recovery with schizophrenia to recovery from acute medical disorders. In fact, this form of being in
recovery pertains to the 35%–80% of an ill population who do not experience full recovery over time. But if this second form of recovery is only applicable to people who do not recover, why is it called “recovery”? Surely this contradiction would lead to considerable confusion in the field, as it most assuredly has.13,18,20
Understanding this notion of being “in” recovery requires appreciating that the idea does not reflect a clinical or scientific reality as much as it does a social and political one. This notion of recovery was borrowed by the consumer movement from their counterparts in the addiction self-help community, who considered themselves to be “in recovery” as long as they were making active efforts to manage their sobriety and rebuild a meaningful life in the wake of their addiction. What appears to have been most appealing about this notion to people with schizophrenia was that their peers with addictions had been reclaiming their lives and the responsibility for making their own decisions even without first being cured of their condition. As there also is no cure for schizophrenia, people with serious mental illnesses argued in a similar vein that they should be able to reclaim their lives and autonomy without first having to recover from mental illness. As we noted in the quotation from Camus above, the important thing in this view is not to be cured but to live a meaningful and full life with “one's ailments.”
It is this right to a self-determined and full life to which people remain entitled, and it is to this responsibility for managing the illness and dealing effectively with life's challenges to which they refer when people describe themselves as being “in” recovery despite the presence of an enduring mental illness. There are, of course, exceptions to this right to self-determination, just as there are in other forms of medicine. In psychiatry, this right remains intact except and until a person poses serious imminent risks to self or others, is gravely disabled, or is determined to be incapacitated by a judge.20
In all other circumstances, people with serious mental illnesses retain the right to sovereignty over their person. As a result, to become recovery-oriented practitioners are expected to respect people in recovery as full partners in the treatment and rehabilitative enterprise, entitled to the same degree of collaborative, shared decision making, and informed consent as they and others are entitled to in other branches of medicine.21
Borrowing also from the physical disabilities movement, this form of being in recovery primarily involves people with “psychiatric disabilities” taking back their lives in an active and purposeful fashion, pursuing their desires to “live, work, learn, and participate fully in their communities,” rather than waiting for an eventual cure.22
This is the form of recovery, presumably available to everyone, that is heralded in the New Freedom Commission report and other recent policy documents as it requires neither additional scientific breakthroughs nor advances in treatment or rehabilitation. What it requires, instead, is for people to take an active role in learning how to manage these illnesses and for society to view and treat people with serious mental illnesses as adults who are capable of doing so, as well as citizens who retain the right to make their own decisions—including the decision to describe their own challenges and victories in the terms of being “in” recovery—even while they remain disabled. These are experiences which appear to have become more common over the last 30 years of community life among people with serious mental illnesses and experiences which hopefully will become even more common in the future.