Bipolar Expeditions (24 page)

This point begs a larger question, however. To the extent DSM categories act as a shield for people's inner psychic states, the pervasive use of the DSM categories might work to prevent people from realizing the social importance of exploring their inner states. Exploration of inner experience has the potential to challenge the uniform and bureaucratic language of the DSM. In so far as people use DSM categories
instead of
exploring the phenomena of their experience firsthand, they may have only the illusion of communicating with other people what it is like to be, say, manic. What are the sensory dimensions of the experience—olfactory, tactile, visual, or auditory sensations? How is the experience embedded in its context? In the person's unique history? At the least, what support group members are able to communicate through the DSM categories is only a small part of what they might well have experienced in their individual lives. Recovering this kind of experience in the social setting of the support group might be a way to complement the functions of DSM categories with another kind of knowledge.
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The Work of Support Groups

If elaborate accounts of interiority are not the norm, then what kinds of work do support groups typically accomplish? No two support group meetings are alike, but most take up the same set of social tasks. For the most part, these tasks are not exotic: they struck me as similar to ordinary informal group interactions in workplaces, schools, and neighborhoods in the United States. In almost all support group meetings, to a greater or lesser extent,
people create new social connections that last over time.
The usual format of the support group is that one person at a time tells the others what has happened to him since the last meeting or since he last attended a meeting, while the others listen. After a few minutes of this, anyone else in the group may chime in with a question or comment. There is usually a designated facilitator who has received training in maintaining this minimal order. Attendance at meetings is quite variable, but more often than not, each person who speaks will hear from someone who remembers what he or she said last time. At one meeting, Tom described his worries about his daughter, whom he suspected was manifesting signs of bipolar disorder because she totaled a car and then ran out into heavy traffic in an apparent suicide attempt. Rebecca remembered that this daughter had rebuffed and denied Tom's efforts to suggest that she seek medical treatment. Deborah wondered if Tom had discussed the genetic component of the disease and gently brought out the fact that though Tom believed this was relevant, he had not talked directly to his daughter about it. Jeff then took up another common task of such groups:
asserting that other people share one's individual experience.
Jeff sympathized with Tom's concern over his daughter, but advised on the basis of his experience that “since you can't control your children, you have to accept that and not get dragged down. If the child is in denial, as this daughter is, there is not much you can do.” In these small ways, a fabric of relatedness is created for people over time. Other people remember them; other people understand their experiences in light of life stories they have told in the past; other people have experienced something similar.

Another common job of the groups is
bringing up relevant information that can help solve practical problems.
The groups' job in this regard is enormous because of the number of technical and social problems in which members' lives are embroiled. How to find a doctor who will accept Medicare or Medi-Cal? How to find a job that will accept one's mood bipolarities or accommodate one's low tolerance for stress? How to know whether a symptom is a normal side effect of medication or a sign of a serious health problem? How to anticipate the effects of more and more complex combinations of drugs? Since there is great volatility in the life circumstances of any individual living under the description of bipolar disorder, conventional class and other social distinctions are less of a barrier to conversation than one might think. A person who gave up a blue-collar job to live on disability will not hesitate to advise another person who has just lost her executive position and her house. A person who once held a high-ranking job will not hesitate to advise another person who is struggling on welfare to gain a minimal credential in early childhood education. Sometimes the knowledge that groups produce is practical and straightforward, but even so, it is often offered with sophisticated understanding of the vagaries of a person's bipolar characteristics. Charles, whose boss had fired him from his high-powered job as a consultant, had explained at an earlier meeting that though he had loved the energy this job required, it also had also drawn him into the heights of mania. With the help of supportive comments from the group, he could now say, “I have a job I feel is less than I am capable of, but I see that I am getting up, going to work, doing the work, so, hey, I acknowledge the good in that.”

Even more specifically related to the group's shared psychiatric diagnosis, group members
tolerate strikingly unusual behavior, up to a point.
A young woman who jangled her keys on the table the whole time she talked, a man who sat in inert dejection, face completely hidden, a woman who constantly interrupted others, another who told her story with such striking intensity that she took far more time than was customary, a man who repeated the same lengthy complaints about his boss in the same words week after week: these and many other odd behaviors were common in groups and mostly occurred without comment. At any time, the facilitator or someone else might object, correct, or simply describe the unusual behavior, and sometimes conflict would erupt when this happened. But even though there were limits, no one knew when they would be called into play or how they would be received. The limits felt soft and flexible, rather than hard and rigid, but this also lent them uncertainty. For me, this uncertainty tinged the meetings with considerable dramatic tension despite the mundane content of many interactions.

Group members also
tolerate descriptions of extreme behavior in an unruffled manner,
as if their own experiences of similar behavior have made such behavior routine and manageable. For example, Ann, whom we met in
chapter 2
, a woman in her fifties, told about her dread and fear of an approaching manic episode as she was facing a trip to Las Vegas. The last time she had one it ended in a hospitalization. A group member suggested Ann use writing in her journal to address her anger directly. She seemed to accept this idea thoughtfully, saying she did write in her journal, but not explicitly about her anger. That seemed like a good idea to her and with that the group moved on. Later, after Jane described her deep, immobilizing depression, Ann joked, “What do you suppose would happen if the two of us went to Las Vegas together, the manic and the depressed?”

At another meeting, Ruth said she was spending impulsively, and kept getting more and more tattoos. Today she is upset because she has an infection in one of the recent tattoos. She is behind on the rent and is starting to pawn stuff so she can buy gas to get around. She can't go to a swap meet anymore because she can't just look around without buying anything, as she would have in the past. She went off her lithium because it made her hair fall out: of course she had to go off it! She has promised her family she won't go to the mall. She is not getting depressed over these restrictions; she is just afraid she will get out of control. Ignoring her lapse in taking lithium, Felicity, the group facilitator, said, “What about the ‘stop' technique, have you tried that? You just firmly say ‘stop' to yourself, if need be many times, if need be very loudly. If you do this, the mind has to work harder to keep being manic.” Ruth thought this was a fine idea, promised to try it, and the group moved on.

Something about the matter-of-fact acceptance, the joking, and the mundane remedies is soothing. Perhaps these experiences aren't so horrific after all. Perhaps they can be talked about conversationally, and managed in ordinary ways. But at the same time, groups
insist on action when a person's life or health is seriously at risk.
Julia tells the group she was recently released from the hospital but has only two more days' medication. She couldn't get a follow-up medical appointment for a couple of weeks. Aaron lets her have it: “This is urgent, this is an acute situation. You go into the emergency room and tell them what the situation is and you do not leave until you have what you need. Just do not leave without enough medication to lastyou.” Unlike Ruth's temporary lapse in taking lithium, which the group ignores for the moment, running out of medication after a hospitalization is treated as an emergency. The same would go for any hint of suicidal thinking or behavior.

The process of creating a fabric of relatedness among group members begins on a person's first visit to a group, when one is invited (but not required) to speak. The introductory stories people tell are often stories of sequential diagnosis, of movement through a series of diagnoses expressed in the terms of the DSM. What is my diagnosis today? What earlier diagnoses have I had and why were they abandoned? What medication or therapy followed each diagnosis? My own story, summarized in the introduction, was modeled on those I heard others tell and honed by my visits to numerous groups. It was a story I would not be able to tell in any other setting, except perhaps a psychiatrist's office. In the support groups, no one found it cause for shock or disbelief, and no one doubted I needed all the therapy I was getting. This reaction was unique in my experience and gave a particular flavor, an individuality, to the social relations built with members of the group. Moving as such stories do from one DSM diagnosis to another recapitulates a map of the terrain that a person has moved through in time. In general people tend to present each new diagnosis as a therapist's best effort to capture the whole picture he or she has of the patient in a shorthand form that will be a map, a guide, to treatment (which is exactly the goal of the capturing and naming that students are learning to do in rounds). But if there are frequent or numerous changes in diagnosis, people often express doubt that the right diagnosis will ever be found or that the medical profession has adequate treatments for them. What group members affirm is less the rightness of any particular diagnosis than the difficulty of the terrain over which successive DSM terms map a path. No solution is found easily, no medication lasts forever, and no one is ever cured of a mood disorder.

Support groups can be seen as a kind of enclosed social space that allows particular forms of intimate sociality. Under the impact of the stigma of mental illness, people often have to accept many social losses: a less well-paying and satisfying job; less continuous support from family members and friends; less ability to maintain relationships of all kinds. The continuous presence of the support group—even with its loose and changeable membership—can serve as a softly furnished haven. The traces people leave of themselves in this space are deposited in the memories of other members and retrieved, now and then, over time. The DSM terms, which I described earlier as protective cloaks, could perhaps be understood better as soft fabric, antimacassars, whose function in the interior space of the support group is to capture the evidence that a person was in the group and to soak up the traces of her social existence.
¹¹
The social framework of knowledge and authority that gives validity to the DSM categories reaches out to embrace the patient and enfold him or her in a legitimate—if limited—social fabric. Even if the fabric is a taxonomy of
pathological
conditions, at least it lies within the realm of
vital
social relationships.

Performativity, Intention, and Diagnosis

In
chapter 4
I discussed the performative aspects of psychiatric diagnoses like manic depression.
¹²
When a physician states that a person has a condition like manic depression, he is harnessing the social authority of his medical degree, training, and experience, and perhaps his colleagues' consensus. Simply by naming the patient's condition, he brings the condition about in the sense that the hospital staff, the family doctor, family members, and the patient himself are likely to take actions on the basis of his statement. These actions give the diagnosis social reality. The authority behind the act of naming means that the person will be treated as if he or she had the condition; this is the sense in which the act of diagnosis is performative. The power dynamics of this can be rather oppressive, if one has any doubt about the merit or efficacy of the treatment, or wishes to take an alternative view of the diagnosis and to
act
upon the alternative view.

Is there any way around the performative effect of a diagnosis? If language uttered by a properly constituted authority—a doctor, say—performatively makes a person described as manic depressive
just be
manic depressive, then how can the person so named redescribe himor herself? Short of going to medical school and returning to the scene of diagnosis to quarrel with the original description, what room for effective speech could there be? Although J. L. Austin was more interested in the conditions under which a speech act could bring about an effect than in the particular conventions (such as heterosexual marriage) that speech acts assumed and protected, recent analyses of performative speech have enhanced our understanding of how active the interaction between performatives and social institutions can be. Judith Butler argues that if a performative succeeds, it does so by covering over the conventionality of the social rules it depends on: “not because an intention successfully governs the action of speech, but only because that action echoes prior actions, and
accumulates the force of authority through the repetition or citation of a prior and authoritative set of practices.
It is not simply that the speech act takes place
within
a practice, but that the act is itself a ritualized practice. What this means, then, is that a performative ‘works' to the extent that it
draws on and covers over
the constitutive conventions by which it is mobilized.”
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But constitutive conventions can be challenged. In hate speech, if the person who was insulted takes up the insult and redeploys it for other purposes, “speaking words without prior authorization,” the conventions that enabled the hate speech in the first place can be exposed and threatened. Because the redeployment is part of a “labor of self-definition” it is thus “unmoored from prior context” and it may lose part of its original performative force. For example, the performative “it's a girl” “girls” the baby at her birth.
¹⁴
But a future “labor of self-definition” allows the possibility that the individual so “girled” may later enact speech and behavior that challenge and modify that effect—the “girl” may performatively produce herself as a boy, or some other gendered identity.
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