This article is co-authored by Alain Topor, Inger Beate Larsen & Tore Dag Bøe and was originally published on Mad in America here. All the footnotes in the article can be found in the original post on Mad in America.
Because of these studies, the image of schizophrenia as a “chronic,” “life-long” disease was problematized, because these new studies emphasized that people could in fact recover. About 20-30% of those diagnosed with schizophrenia experienced total recovery of symptoms, functions and social life. The same amount of people were in a process of recovery. Even if most of this research dealt with schizophrenia, the idea was that if one could recover even from this “chronic illness,” then the chances to recover from other “disorders” were that much greater.
Additionally, this research clearly showed that socio-cultural factors were related to recovery.
In a follow-up study in Vermont, Harding et al.3 studied a group of persons diagnosed with schizophrenia with long and repeated stays in hospitals and living in back-stage wards in a state hospital. These persons did not improve enough to leave their wards after being treated with the first-generation neuroleptics. However, they were offered a long-term rehabilitation program and some of them could leave the hospital already after a few months. Coming out, they were offered a range of residence alternatives and on-going rehabilitative support in the community. At follow up, after 32 years, 68% did not display any sign of schizophrenia. 50% was not using neuroleptics. Analysing these data, DeSisto et al.6 stressed the importance of hope, relational continuity, and a working collaboration between user and professional for sustained recovery.
A WHO study5 showed that the chances to recover were higher in low-income countries compared with high-income countries, despite the big gap between the facilities in the health care services. Hypotheses to explain these differences in recovery rates included family structure, conditions in the labor market, and different cultural explanations of mental health problems.7
Even Warner’s review4 of follow-up studies in the 20th century finds a relatively high occurrence of recovery throughout this period despite the repeated introductions of different treatment interventions. Warner demonstrated that the percentage of people recovered or in recovery decreased in the 1930s, and the only explanation he could find was the economic depression—evidence that societal issues are responsible for recovery rates. He also found that the use of first-generation neuroleptics in the 1950s (sometimes called the “psychopharmacological revolution”) did not improve recovery rates at all.
Consequently, these studies underline the structural, cultural, and relational factors impacting recovery and the unclear connection to psychiatric treatment.
If the possibility of recovery from “severe mental illness” was a direct challenge to the established psy-knowledge, the lack of a clear connection between specific treatment interventions and recovery was a second blow to it.
Once the possibility of total and social recovery, even for people diagnosed with schizophrenia, was established, the research focus moved to the process of recovery. One of the most important contributions made by research on recovery is the understanding of people diagnosed with “severe mental health problems” as not merely victims of an “illness” but as agents in their own lives. Research on recovery processes and people’s stories about their own recovery show how they tried to cope in different ways with their difficulties or “symptoms”, and also how they dealt with their families and friends, as well as professionals from social and mental health agencies. In addition, many had found their own ways of dealing with unwanted effects of medication.
Until then, and still often, the person was characterized by his/her shortcomings, deficiencies, disturbances, disabilities, and lack of sense of reality. The fact that the same person could also be seen as an agent in his/her own life might be considered a third blow and can be compared to a Copernican revolution in the psy-field. Recovery no longer revolved around the medical profession but had several centers outside the medical galaxy.8
This conception of people as agents in their own recovery process also contributed to a recognition of these people’s rights as citizens, which included their right to participate in planning and decisions about the interventions they received.
Recovery is 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 within 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.
An Updated Definition
But even if this definition is often quoted, it is not unobjectionable, as it focuses mainly on changes inside the individual. This risks forgetting the first lessons of recovery studies about the importance of people’s societal, social, and material conditions. It also disregards the research pointing at the importance of money, social relationships, environment etc. in a recovery process.10,11,12,13,14 Therefore, we think it would be possible and justifiable to update Anthony’s definition of recovery.
We have identified three basic assumptions implicit in Anthony’s definition that we would like to challenge and propose alternatives to.
Firstly, Anthony’s definition describes recovery processes as an individual, personal process which leaves aside the previous discoveries of recovery research about the importance of relational, cultural, material, and societal contexts around people. We propose that recovery is a basically social process.
Secondly, the definition describes recovery processes as an internal psychological process and disregards the person’s material and social living conditions. We propose that recovery always happens in specific situations, at specific places where social and material conditions are crucial.
Thirdly, the definition frames the recovery processes in an illness model. We propose a social model as more adequate to understanding recovery processes.
Recovery is a question of social transformation as well as of personal reformation. Therefore, we think we should combine the individual aspects with social aspects such as relations with others and living conditions, and propose the following redefinition:
Recovery is a deeply social, unique and shared process in which our living conditions, material surroundings, attitudes, values, feelings, skills, and/or roles are changing.
It is a way of living satisfying, hopeful, and reciprocal lives, together with others even though we may still experience distress, unusual experiences and troubled or troubling behaviour. 15
Recovery involves engaging in new material and social contexts and in open dialogues where new ways of understanding and handling the situation are created as we move beyond the psycho-social-material crisis.
However, the proposed redefinition is not only about words, but also has important implications for what recovery-oriented practices and research should be about. A recovery-oriented work should include societal challenges on social reforms, and social work to offer decent living conditions and thus diminish inequalities when it comes to economy, housing, schools, and local environment. To quote Priebe:
What should be done? Obviously, in order to achieve substantial improvements in public mental health, we require societies to change and implement all those factors that promote mental health: societies should provide safe and supportive upbringing conditions; secure peace within and between countries; eradicate poverty; guarantee good education; strive for full employment; promote social cohesion and functional communities; and have little social inequality. These requirements are clear and unequivocal, no more research needed.16
Changes might be the result of a person’s initiative, but also from his/her social network, from different agencies, but also from the state creating better opportunities regarding health, social, and unemployment benefits.
Changing our environment may imply various initiatives. At a personal level it can be about leaving some social settings (work, school, leisure activities, and even family) and entering new ones. This could also imply changing material surroundings (new apartment/house, new neighbourhood). It could also mean changes within the social relations you are in. Such social transformations also change the lives of each of us. Having a home, for example, does not only mean having a roof over your head. It means having enough money to keep it nice; it is about the location, and access to shops, health care services, and cultural events.
To focus on the individual is important, but not enough. The individual is social, and we need both perspectives to continue our journey.
Research in different countries about “Supported Socialization” shows that improved economic conditions for people with severe mental problems might reduce what are usually perceived as symptoms of “illnesses” and “disorders,” paving the way for reciprocal relationships.10,17,18 In the same way, “Housing First”19 and “Individual Placement and Support,”20 both based on the social needs of users, have proven to be important stepping stones in recovery processes. In “Open Dialogue” we find a fundamentally social approach to mental health problems, aiming to change social relations and understandings of the situation for those involved.21,22
No person can exist independently of social and material surroundings. One might suggest that the life of a person is intrinsically intertwined in and dependent on social life, from intimate relations to the societal level. Social places and spaces are needed to develop a sense of self and to recover. Recovery, then, involves changing—and having the social right to access opportunities to change—our environments just as much as changing ourselves.
We have presented a new definition of recovery based on the discussion above. But we should consider this definition as we might consider recovery itself: As a process. And at the same time, whilst in this process, conceding: “This is how far we came this time.” This does not mean that the definition is final, only that others may continue.
Alain Topor is a psychologist and professor in the Department of Psychosocial Health at the University of Agder (Norway) and assistant professor in the Department of Social Work at Stockholm University (Sweden). He participated in the closure of mental hospitals in Sweden and has conducted research about different social aspects in the recovery process from severe mental health problems.
Inger Beate Larsen is a psychiatric nurse with a major in Health Sciences and a PhD from the University of Bergen. She has many years of experience working in an acute psychiatric ward, and since 1994 has held a scientific position at the University of Agder. She manages the research group “An Including Society” in its Department of Health and Sport Sciences.
Tore Dag Bøe is an associate professor in the Department of Psychosocial Health at the University of Agder (Norway) and a social worker with a PhD in Mental Health Care. His writing and research, including books and various publications, address the ethical and social aspects of mental health care and how practice can facilitate change in the social-relational domain.