As reported in
February 25, 20011 Vol. 2, issue 7 Recovery to Practice Newsletter. Posted at http://darkestcloset.blogspot.com/
Considering Recovery as a Process
A Continuation of What Does It Mean to Say That Recovery Is ‘Nonlinear’?
by Larry Davidson, Ph.D., RTP Project Director
Some readers of last week’s Highlight responded with concern to the author’s statement that she did not believe that she would ever fully recover from bipolar disorder—they worried that the author either had lost hope or was not aware that full recovery is indeed possible within the context of bipolar disorder. The remainder of the author’s narrative, however, described the many ways in which she had improved her life and been effective in moving the disorder into the background, representing the many ways in which she was indeed “in recovery.” Her story provides a very rich and useful example of how recovery can be a process as well as an outcome.
There are many paths to recovery, and each person must find his or her own way to deal effectively with mental illness. For many people, accepting that the condition will not go away—at least any time soon—is an important step along that journey. Patricia Deegan has been perhaps the most eloquent spokesperson for this aspect of recovery, capturing it in what she describes as “the paradox of recovery”:
… that in accepting what we cannot do or be, we begin to discover who we can be and what we can do. Thus, recovery is a process. It is a way of life. It is an attitude and a way of approaching the day's challenges. It is not a perfectly linear process… (1996, 13)
The author of last week’s Highlight began her story by noting the significant role this realization had played in her own recovery. Whether her recovery will eventually lead to a complete and full recovery from bipolar disorder, only the future will tell. It is important, nonetheless—and perhaps especially in these circumstances—to realize that recovery can be a nonlinear process that does not necessarily lead to anywhere else. It can be, as Deegan suggests, “a way of life.”
A previous Highlight dealt with the issue of the nonlinear nature of recovery when understood as an outcome.
this week’s Highlight will deal more in depth with the way in which recovery as a process is nonlinear as well. While all of the points previously made about recovery as an outcome remain true of recovery as a process, there are some unique aspects of recovery as a process that warrant their own explanation.
The first thing we must clarify is what we even mean by “recovery as a process.” Recovery as an outcome is fairly straightforward and commonly understood, as its meaning in this situation is similar to its meaning in other medical conditions: recovering from a serious mental illness means no longer having the illness, and therefore no longer experiencing its signs or symptoms. But what does it mean to say that recovery can also be a process?
Recovery viewed in stages. Some people take recovery as a process to mean an earlier stage where a person is on the way to recovering from the illness—meaning that while the person’s behavioral health and life may be improving, he or she has yet to recover fully. According to this view, recovery as a process remains linked to the notion of recovery as an outcome; thus, the process of recovery should be considered to be one of recovery (as opposed to simply coping) only if it is leading the person toward an optimal clinical outcome. Otherwise, recovery could be used to refer to any experience a person with a mental illness is having, including any setbacks and relapses. This position helps us to avoid the problematic situation in which “recovery” comes to refer to just about everything—and therefore comes to mean nothing at all (Roe, Rudnick, & Gill, 2007).
Several models of recovery follow this perspective and break the overall process down into a number of components, one following from the other. John Strauss and I (1992) proposed one such model that focused on the person’s efforts to reconstruct an effective sense of self, moving from being hopeful to enacting a positive sense of self to using the self as a resource for managing the illness. The State of Ohio was the first to use such a model to inform policy and practice, suggesting that a person progresses from being unaware of the illness and dependent on others to being aware of the illness and independent in relation to others, with a few steps in between (Townsend, Boyd, & Griffin, 2000). Since then, several other models have been put forth by researchers and clinicians around the world. All features the stages of having lived a life a before the illness, grappling with the illness, and, eventually, moving beyond the illness. All of these models have intuitive appeal, and can be useful in understanding what a particular person may be grappling with at any given time (Davidson, Roe, Andres–Hyman, & Ridgway, 2010).
As useful and intuitively appealing as they are, however, the problem with all of these recovery models is that they are, unfortunately, linear. They stipulate a linear process in which the person goes from stage 1 to stage 2, and so on over time. And even in those cases when the model’s proponents insist that the components are interrelated and not necessarily linear (as Strauss and I did back in 1992), such models have a tendency to be taken both literally and linearly by many people using them—even though we know that recovery is not linear.
Non-linear process. Is it possible to view recovery as a process in an explicitly non-linear way? To understand “recovery as a process” not as an earlier stage on the path to full recovery, but rather as separate and distinct from “recovery as an outcome”? Rather than viewing recovery as a process as leading in a linear fashion to recovery as an outcome, can we sever the connection between the two in order first to understand recovery as a process on its own terms? What would that look like?
One way to de-link recovery as a process from its associations with outcome is to accept that, for some people (like the author of last week’s Highlight), traditionally defined clinical outcomes may not change much over time. This does not mean, however, that the person’s life as a whole might not change substantially in other ways. A disability model does not require people with developmental disabilities to acquire IQ points to conclude that their lives had improved considerably based either on our efforts, their own efforts, or a combination of both. Individuals with developmental disabilities can be taught how to navigate their communities, can attend school, or can join a swimming team without seeing any appreciable change in individual IQs. This does not detract from the fact that their lives have been significantly enriched as a result.
The same thing may also be true for someone with a mental illness, who may be accompanied to church, go out to eat with friends, or bring gifts to his or her nieces and nephews at the family Christmas party without any appreciable change in his or her mental illness. Being in recovery in this sense has to do with pursuing and participating actively in a meaningful and pleasurable life within the limitations imposed by the disability. Though one might argue that involvement in these activities constitutes an outcome, the only outcome in this scenario is that the person is able to actively pursue the kind of life he or she wishes to lead. Within the context of much of behavioral health, the process of living one’s life is not ordinarily considered an outcome.
Quality of life. Separating the quality of a person’s life from his or her behavioral health status is important for a number of reasons. For one, a person’s diagnosis does not define him or her as a person. No two people with schizophrenia are going to be any more similar than any two people who happen to be, say, psychologists or nurses. Secondly, the different aspects of mental illness typically wax and wane for most people over time, with improvements in any one domain only loosely related to improvements in other domains (Strauss & Carpenter, 1977; Strauss, Hafez, Lieberman, & Harding, 1985). Not only is recovery as an outcome non-linear, then, but it is also made up of different domains of functioning that are relatively independent of one another. I may seem “more recovered” when I get a job, but may at the same time hear more voices. Or perhaps I hear fewer voices when I work, but then find that I cannot spend time with friends or family because I become too anxious. We unfortunately know little about what leads to, or predicts changes in, the course of serious mental illnesses. Whereas reductions in symptoms might influence future symptom levels, they may not influence work or social functioning, and none of these factors may relate directly to quality of life.
In this sense, it becomes difficult to equate recovery with symptom or functioning levels in people with prolonged conditions. If we equate recovery with a decrease in symptoms or an increase in functioning, then we can readily imagine circumstances in which a person in recovery “gets worse.” People often experience an increase in symptoms or a decrease in functioning in response to important life events, such as experiencing the death of a loved one, being fired from a job, or suffering a grave disappointment. More importantly, a person in recovery can experience an increase in symptoms in response to positive life events, such as moving into one’s own apartment, starting a new job, or falling in love. Should such symptom exacerbations mean that these participants are no longer in recovery? No.
Waiting, at a price. What is the importance of accepting that some symptoms or impairments may not go away—at least for an extended period of time—and that the person can pursue and be “in” recovery nevertheless? Consider the young man who is told that he cannot be referred for supported employment until he has been clinically stable for 3 months or the woman who is advised to wait on her dream of becoming a mother until her symptoms abate. What if these outcomes of symptom cessation or clinical stability, as defined by caring others, never occur? What may have been lost in the waiting? As has been true for those who have had to struggle for their civil rights, for many people with mental illness, this insistence on waiting has come at a very high price (Davidson, 2006).
For example, one of the core criteria of supported employment may be rapid job placement, regardless of symptoms. Some well-meaning practitioners, however, may continue to insist that people not be referred to supported employment, or not pursue employment on their own, until they have achieved some inchoate state of stability. From these practitioners’ perspectives, the best thing a person can do to recover from the illness is to minimize the daily stress he or she has to deal with while convalescing. From the person’s perspective, however, prolonged unemployment, poverty, and empty time may be more stressful than attempting to work in the face of symptoms. (We are aware of no studies showing that unemployment promotes recovery.) Similarly, some practitioners continue to view each episode of symptom exacerbation as a relapse and each stay in an acute-care setting to be a readmission, even though from the person’s point of view, these occurrences may represent, or be a consequence of, a movement forward in their lives. These are the unanticipated and unintended side effects of continuing to view recovery primarily as an outcome, an ideal state of health, toward which all processes must flow.
For this reason, among others, we suggest focusing primarily on the process of recovery—that is, on supporting people in their efforts to lead full lives in the face of serious mental illnesses, rather than on achieving a more distant and elusive outcome. Though a life with the illness may not be the optimal outcome from anyone’s point of view, it might be the best that many people can hope for in the foreseeable future. In these cases, we suggest that entering into and pursuing a better life in the face of mental illness poses an extremely important and valuable challenge irrespective of outcome, not only for that person, but also for those of us privileged to be offering care.
For further reading:
Davidson, L. (2006). What happened to civil rights? Psychiatric Rehabilitation Journal, 30(1), 11–14.
Davidson, L.; Roe, D.; Andres–Hyman, R.; & Ridgway, P. (2010). Applying Stages of Change models to recovery in serious mental illness: Contributions and limitations. Israel Journal of Psychiatry, 47(3), 213–21.
Davidson, L., & Strauss, J.S. (1992). Sense of self in recovery from severe mental illness. British Journal of Medical Psychology, 65, 131–45.
Deegan, P. (1996). Recovery and the conspiracy of hope. Presented at the Sixth Annual Mental Health Services Conference of Australia and New Zealand, Brisbane, Australia.
Roe, D.; Rudnick, A.; & Gill, K.J. (2007). The concept of ‘‘being in recovery.’’ Psychiatric Rehabilitation Journal, 30(3), 171–73.
Strauss, J.S., & Carpenter, W.T. (1977). Prediction of outcome in schizophrenia: III. Five-year outcome and its predictors. Archives of General Psychiatry, 34(2), 159–63.
Strauss, J.S.; Hafez, H.; Lieberman, P.; Harding, C.M. (1985). The course of psychiatric disorders III: Longitudinal principles. British Journal of Psychiatry, 55, 128–32.
Townsend, W.; Boyd, S.; & Griffin, G. (2000). Emerging Best Practices in Mental Health Recovery. Columbus, Ohio: Ohio Department of Mental Health, Office of Consumer Services.
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