Abstract
Self-management of mental illness is a therapeutic paradigm that draws on a distinctly biomedical conceptualization of the isolability of personhood from pathology. This discourse posits a stable and rational patient/consumer who can observe, anticipate, and preside over his disease through a set of learned practices. But in the case of bipolar disorder, where the rationality of the patient is called into question, the managing self is elusive, and the disease that is managed coincides with the self. While humanist critiques of the biomedical model as applied to mental illness have argued that its logic fatalistically denies patients intentionality and effectiveness (Luhrmann, Of Two Minds: The Growing Disorder in American Psychiatry, 2000), biomedical proponents claim that psychiatry’s way of envisioning the body as under the control of the intentional mind actually returns agency to the patient/consumer. Rose (The Psychiatric Gaze, 1999) remarks that biomedical models have the potential to “[open] that which was considered natural to a form of choice” (p. 37), and that techniques of medical self-control help constitute the free embodied liberal subject who is obliged to calculate and choose. Through an examination of clinical literature as well as the practices and narratives of members of a bipolar support group, this paper explores ethnographically the possibilities for subjectivity and agency that are conditioned or foreclosed by the self-management paradigm, which seems to simultaneously confer and deny rational selfhood to bipolar patients. To express their expertise as rational self-managers, patients/consumers must, paradoxically, articulate constant suspicion toward their present thoughts and emotions, and distrust of an imagined future self. I argue that through their self-management practices, bipolar support group members model provisional and distributed forms of agency based on an elusive, discontinuous, and only partially knowable or controllable self—revealing, perhaps, the limits of the contemporary reification and medicalization of both selfhood and disease.
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Notes
I am indebted to one of my anonymous peer reviewers for directing my attention to this passage.
DBSA, or the Depression and Bipolar Support Alliance, is a patient-directed national not-for-profit organization that was founded in 1985. According to its mission statement, DBSA provides “hope, help, and support” to people living with bipolar disorder through “peer-based, recovery-oriented, empowering services and resources when people want them, where they want them, and how they want them” (http://www.dbsalliance.org/site/PageServer?pagename=dbsa_aboutdbsa, emphasis in original). Between May of 2009 and January of 2010, I attended nearly every weekly 90-min support group meeting of a DBSA chapter. I often arrived early and socialized with my informants in a local coffee shop or in the meeting room, and usually stayed after the meetings, when people would hang out and smoke outside of the center. During the meetings, I participated in weekly introductions and closing “games” (each week, a different person was responsible for coming up with a question—which ranged from “What is your favorite food?” to “You have a bulldozer and can bulldoze one person or thing; what do you pick?”—for everyone to answer). I did not generally speak during the meetings, although on a few occasions I was asked personal questions and answered those honestly. I received permission from the group’s clinical leader to take notes during the meeting, but not to use a recording device. I also confirmed each week that those present were comfortable with my attendance and observation. Apart from attending support group meetings, I conducted semi-structured interviews with five members: Warren, James, Christine, Kurt, and Tricia. These interviews ranged from 1.5 to 4 h in length, and were recorded and transcribed.
The individuals described in this paper are those with a diagnosis of Bipolar Disorder 1 or 2 who regularly attended meetings and considered the support group to be an important component of their therapeutic regimen. I chose to focus on their narratives partly for pragmatic reasons—I had more of an opportunity to become well acquainted with regular support group attendees than with those who come only once or infrequently—but also theoretical ones: I wanted to study the cultivated subjectivities of people who not only accept and believe in their mood disorder diagnosis, but also make a constant, vigilant effort to self-manage. Insofar as the biomedical paradigm of self-management, and the broader notions of rational personhood and choice from which it draws, are the concerns of this paper, I do not claim that the issues I describe are representative of all or even most people with bipolar disorder. Instead, if any generalizations can be drawn, they are at the level of theoretical questions about selfhood, rationality, and agency and not specific to those classified as mentally ill. Because of their putative irrationality juxtaposed with the incitement to highly rational enactment contained in the therapeutic paradigm, however, bipolar self-managers render particularly visible certain paradoxes and contradictions of governmentality through their practices.
Throughout this paper, I generally choose to use the phrase “bipolar person” as opposed to “person with bipolar disorder” in order to avoid reinscribing the notions of the discreteness and separability of rational selfhood and disease that I seek to interrogate. To further explore the ramifications of this choice, I take up debates about “I am” versus “I have” language ethnographically and within anthropological literature later in the paper.
In accordance with federal privacy regulations, support group members’ names have been replaced with pseudonyms.
I am grateful to Emily Martin for discussing this vignette with me at an early stage of my writing process and suggesting the term ‘distributed’ for the style of agency that I was describing.
While the objective of this paper is not to make an explicitly Marxist argument, I employ the term “reification” following Taussig (1980). Drawing on his conversations with a terminally ill patient about the patient’s search for meaning in her symptoms, Taussig illustrates that “medical practice is a singularly important way of maintaining the denial as to the social facticity of facts” (p. 5). Here, I wish to emphasize that the delineation of rational self and bipolar symptom in the self-management literature similarly mystifies a set of social, intersubjective, and embodied relations.
“Mixed episodes” include symptoms of both mania and major depression.
Jamison is a clinical psychologist and professor whose published work for lay audiences includes Touched with Fire (1993) and An Unquiet Mind: A Memoir of Moods and Madness (1995). In Touched with Fire, Jamison marshaled historical evidence to assert that manic depression is associated with creativity and artistic ability, and that the diagnostic category can be retroactively applied to figures such as Virginia Woolf, Lord Byron, and Vincent van Gogh. Jamison subsequently revealed her own struggles with manic depressive illness in her memoir, An Unquiet Mind. As Emily Martin notes, “it would be hard to exaggerate the impact of Jamison’s work, which has been featured in major newspapers, magazines, and documentary films” (Martin 2007, p. 23).
It is ironic, of course, that “empowering” ex-patients who had little social or economic capital to exercise consumer choice in many ways only served to “[exaggerate] preexisting differences in a two-tiered treatment system” (McLean 2000, p. 830). McLean notes that while being a patient/consumer in the private sector meant already having the power to “shop for” the therapeutic services that one actively chose, the same empowerment in the public sector “produced consumers who ‘consumed’ treatment without exercising any choice in clinician or control over treatment” (ibid.).
While my focus in this section and in the study at large is limited to the self-management modality and experiences of its enactment in the contemporary United States, it bears mention that recent cross-cultural literature on bipolar disorder—particularly in sites that are undergoing processes of neoliberalization or transitioning toward a market economy—speaks to the findings and arguments in this paper. Emily Ng (2009), for example, describes how in the city of Shenzhen, China, “narratives of individual responsibility and self-blame for illness control were prominent among patients of the post-Mao generation (those who grew up in the post-1980s economic reform era in China), while such narratives were almost absent in patients who reached their adolescence during the Maoist era” (p. 430).
Neurodiversity movements, characterized by this type of rhetoric and patient self-advocacy, have emerged in recent years among persons diagnosed with autism and schizophrenia, among other diseases/disorders. To my knowledge, no such movement exists for bipolar disorder, although there are certainly arguments such as Martin’s (2007) demonstrating a cultural affinity for mania in the contemporary United States, as well as a popular association of manic depression with artistic talent and creativity.
Foucault writes that technologies of the self privilege self-knowledge over self-care, and “permit individuals to effect by their own means or with the help of others a certain number of operations on their own bodies and souls, thoughts, conduct, and way of being, so as to transform themselves in order to attain a certain state of happiness, purity, wisdom, perfection, or immortality” (Foucault et al. 1988, p. 18).
In his article on “‘Schizophrenic Person’ or ‘Person with Schizophrenia’?” Louis Sass (2007) offers a compelling argument that in bracketing out the schizophrenia “disease” and only listening to “what can be understood to emanate from [the patient’s] supposed ‘personhood’” (p. 414), the biomedical model is, in unintended ways, inherently stigmatizing. Specifically, Sass shows, the “person with schizophrenia” formulation systematically obscures or dismisses important “schizophrenic modes of being”—including forms of intentionality, insight, and irony—by considering them to come from something wholly distinct from the self. Thus, the failure of biomedical models to listen to “the specifically schizophrenic qualities of the person” forecloses the possibility of encountering “points of view that can most deeply challenge as well as enrich our own” (p. 415, emphasis in original).
Not every story or experience in the support group was one of self-management. A particularly striking and disturbing counterexample emerged one evening early in my fieldwork, when the wife of a bipolar man with whom several group members were acquainted showed up at the meeting on her own. Alternately tearing up and laughing in bitter disbelief, she described her husband’s current manic state: he’d stopped going to his real job in favor of staying up all night working on a “new business plan,” was lying and using illegal drugs, had left their two-year-old daughter alone to play with an X-ACTO knife, and had drained the couple’s savings by $20,000 at a casino. What upset her the most was the fact that her husband had seen the manic episode coming and was presently aware of his state, but was unbothered by it and felt no obligation to intervene and self-manage. “He knows he’s manic but doesn’t care,” she had complained. “He’s doing these things on purpose.”
The discussion that ensued was a complex one for the group, but I believe that the direction it took is illustrative of the distinct and paradoxical form of self-managing bipolar subjectivity that many of the group members inhabit, and that this woman’s husband was rejecting. Using their own personal histories as examples, group members found themselves in the strange position of explaining to the woman that it might not be worthwhile to try to reestablish trust with her bipolar husband. As James put it:
I imagine down the line he may feel remorse, but that may not matter. Lots of people feel remorse. Abusive people even feel remorse. But even if he is medicated, what happens the next time around? And there will be a next time around.
The group’s consensus was that an awareness of one’s mania implies a capacity and responsibility to distance oneself from and attempt to act upon it, explaining: “Once you have any awareness you should be trying to take some responsibility”.
Huxley and Baldessarini (2007), however, report that the “prognosis for BPD was once considered relatively favorable, but contemporary findings suggest that disability and poor outcomes are prevalent, despite major therapeutic advances” (p. 183).
The management of diabetes is itself far from unproblematic, and in fact often implicates aspects of selfhood and mood. Indeed, the struggles faced by patients managing supposedly straightforward physiological conditions are a testament to the broader unsustainability of the biomedical distinction between managing self and disease. Yet, the notion that there exist diseases that can be fully divided from and managed by the self (among which diabetes and hypertension are thought to be paradigmatic) is a powerful imaginary that is constantly invoked by bipolar patients and in the mental health self-management literature. For examples of excellent ethnographic work that take up the difficulties experienced in diabetes management, see Borovoy and Hine (2008) and Mol (2008).
I borrow the phrase “culprit lesion” from Barry Saunders’ (2008) fascinating ethnography of the historically genred reading, writing, and diagnosing practices that occur in a university hospital CT suite. Saunders demonstrates that even in the post-modern era of so-called “non-invasive” diagnostic modalities, “CT technology…is haunted by nineteenth-century projects of comparing, interpreting, classifying morphological specimens and residues—including, ultimately, the residue of the cadaver” (p. 12). Furthermore, he asserts that even though the lesion, “once fixed, macroscopic, and retrieved from the cadaver” is now “microscopic, molecular, fluid,” it nonetheless persists, particularly as the object of diagnostic aesthetics of detection and intrigue: “even if very small, the fixable, visible lesion remains important” (pp. 2–3).
In fact, contemporary psychiatry is often acutely aware that the success of its project will depend upon its ability to apply something analogous to the anatomo-clinical gaze to mental illnesses. As such, psychiatry explicitly describes its disease objects as, if not lesions per se, at least isolable neurochemical events that can (now or someday) be visualized. In an influential commentary on “Psychiatry as a Clinical Neuroscience Discipline” published in the Journal of the American Medical Association (JAMA), for example, NIMH Director Thomas Insel argued that
psychiatry’s impact on public health will require that mental disorders be understood and treated as brain disorders. In the past, mental disorders were defined by the absence of a so-called organic lesion. Mental disorders became neurological disorders at the moment a lesion was found. With the advent of functional neuroimaging, patterns of regional brain activity associated with normal and pathological mental experience can be visualized, including detection of abnormal activity in brain circuits in the absence of an identifiable structural lesion (Insel and Quirion 2005, p. 2221).
Eugene Raikhel, personal correspondence.
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Acknowledgments
I am grateful to my brilliant advisors—Jennifer Cole, Judy Farquhar, and Eugene Raikhel—for their ongoing encouragement, support, and insight. I have also been fortunate to have many conversations about this project with Professors E. Summerson Carr, Susan Gal, Don Kulick, Bert Cohler, and Rick Shweder, who all raised challenging questions that pushed my analysis in productive directions. In addition to these University of Chicago faculty members, I would like to thank Professors Emily Martin, Nikolas Rose, Bob Desjarlais, Angela Garcia, and Barry Saunders for their generosity in taking the time to discuss my work and offer their invaluable perspectives. Furthermore, I am indebted to my wonderful colleagues in the Clinical Ethnography and Medicine, Body, and Practice Workshops, my anonymous peer reviewers, and to the members of my writing group, who patiently offered feedback on so many drafts of this article that they probably have committed portions of it to memory by now. Finally, I thank my informants for sharing their lives and teaching me so much.
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Weiner, T. The (Un)managed Self: Paradoxical Forms of Agency in Self-Management of Bipolar Disorder. Cult Med Psychiatry 35, 448–483 (2011). https://doi.org/10.1007/s11013-011-9231-1
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DOI: https://doi.org/10.1007/s11013-011-9231-1