Living Outside Mental Illness: Qualitative Studies of Recovery in Schizophrenia

4. Living Inside Schizophrenia

4 ■ ■ ■ ■ ■ ■ ■ ■ ■ Living Inside Schizophrenia Even in conditions so far removed from the reality of the external world as hallucinatory confusional states, one learns from patients after their recovery that at the time, in some corner of their minds, as they express it, there was a normal person hidden, who watched the hubbub of the illness go past, like a disinterested spectator. —Sigmund Freud, An Outline of Psychoanalysis WE HAVE COLLECTED OUR MAPS, filled our backpacks with supplies and our canteens with water, and are ready to set off on a more systematic exploration of lived experiences of schizophrenia. Conventional clinical wisdom cautions that this may be a journey from which there can be no return . “Once a schizophrenic,” this clinical voice murmurs, “always a schizophrenic ,” believing schizophrenia to be an invariably life-long condition. “Once a schizophrenic,” this voice murmurs, “only a schizophrenic,” believing also that schizophrenia subsumes the entirety of the person affected by it (Davidson, Chinman, et al., 1999; Harding, Zubin, and Strauss, 1987). This chapter gives us an opportunity to explore the subjective experiences that all too often lie buried and hidden underneath such beliefs (Davidson, 1997). Our review in chapter 1 already offered counterevidence to these clinical claims, with first-person accounts of recovery and longitudinal studies demonstrating heterogeneity both in course and outcome for schizophrenia . These studies documented significant variability over time, between people, and across domains of functioning within an individual. Apparently , some people will lose the entirety of their lives to schizophrenia and will remain profoundly disabled by it until they die. It is apparently equally true, however, that many people will not lose their lives to schizophrenia and will only be affected by the illness for a brief to moderate period of time. For some it is a short journey from which they return relatively unscathed , for others a black hole from which they never fully escape. Knowing that both of these extremes are possible, and that the vast majority of cases lie in the gray areas in between, makes our present task particularly daunting. We mentioned at the end of the previous chapter that we have found Harry Stack Sullivan’s impression that people with schizophrenia “are much more simply human than otherwise” (Swick Perry, 1953) to serve as a useful guide in our explorations. We invoke that principle here as one way to begin tackling our challenging task. We interpret Sullivan’s principle to mean that people with schizophrenia should be accorded at least the same rights as people standing trial for a crime; they should, that is, be presumed to be innocent (i.e., healthy) until proven guilty (i.e., suffering from an aspect of the illness). This use of Sullivan’s adage is particularly appropriate in this case, as people with schizophrenia frequently complain in interviews about instances in which other people assumed that an aspect of their behavior (e.g., becoming angry or anxious) was due to their illness when they, in fact, considered it to be a normal response to a given situation (e.g., being criticized or trying something new). Given that we readily acknowledge that we do not yet know what this thing called schizophrenia is, or the multitude of ways in which it may affect people, we proceed in what follows with precisely the opposite attitude. That is, we will not assume that any aspect of our participants’ experiences is due necessarily to their illness, unless we have clear and compelling reasons to think so. Like Sullivan, we assume that it is so-called normal people who become afflicted with schizophrenia and that most, if not all, of their ways of dealing with this illness are likewise normal responses to being affected by a disabling condition. Living Inside Schizophrenia ❙ 127 Other than having a psychotic disorder, they were and remain “much more simply human than otherwise.” Far from being an obvious matter, this point of departure stands in stark contrast to that of most investigations of schizophrenia, which we suggest are contaminated somewhat by unacknowledged assumptions based in stigma. Most psychiatric research begins with the premise that people with schizophrenia are different from the rest of us, the result being that any possible markers of difference that are identified (e.g., the size of their ventricles , their use of language) are then attributed to their illness. Beginning with this premise is what gets investigators into trouble, however, as...