Bipolar Expeditions (23 page)

The reason DSM categories are so prominent is embedded in the history of reimbursement for psychiatric care. In the first half of the century, patients who could afford it usually paid for psychotherapy outof-pocket, but by the 1960s, insurance companies had begun to cover part of the cost. During the 1970s, the federal program Medicaid became another source of payment for therapy. When third-party payers as powerful as the federal government and insurance companies entered this scene, their interests began to affect what doctors who wished their patients to be reimbursed had to do. They had to use the system of categories developed in accordance with a scientific model—one that was made up of presumably clearly identifiable, discrete disease categories. Using this set of categories has become an “obligatory passage point” for anyone who wishes to tap into the funds of third-party payers.
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Rules and regulations of various institutions have made the DSM-IV into the only deep channel that leads to the port of payment for mental health care.
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The DSM categories are highly abstract “text-atoms,” each of which condenses the detailed contexts of daily life in which people experience moods of all sorts. The term comes from the sociolinguists Michael Silverstein and Greg Urban, who point out, “To turn something into a text is to seem to give it a decontextualized structure and meaning, that is, a form and meaning that are imaginable apart from the spatiotemporal and other frames in which they can be said to occur.”
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There is a certain power in such “text-atoms” and in their abstract precision. In support groups people often encountered, or were deliberately taught, a new vocabulary for what they were experiencing. Finding a language for experiences that you could not name and that you did not know were shared can bring relief from feelings of isolation. At an East Coast support group meeting, an African American couple came for the first time. Caroline introduced herself as manic depressive; her husband identified himself as there to support her. She said she liked hearing people in the group use the word “episode” to refer to times they were manic or depressed. She hadn't known what to say of her own manias or depressions, other than that she was “sick,” a term that didn't seem right to her. With relief, she embraced “episode” as a way of demarcating her special moods.

At other times, DSM terms can help groups clarify the range of experiences they have. At a West Coast meeting, Sam, the man discussed in
chapter 3
who had the accident with his van, came with his sister Rosalind. He showed the group a letter he had been writing to the secretary general of the United Nations arguing that weapons should only be produced as they are needed, not stockpiled for the future. This would be, he said, “a new mind-set for the millennium.” After describing the contents of the letter, Sam read some sections from his diary that recounted his days of writing, his moment of reckoning when, rereading the draft, he decided it was worthless, and his descent into depression. Despairingly, he said, “This letter has been in the works for eleven years.” Sam and his sister left at the end of the meeting, but a group of six or seven other members went to a nearby restaurant. Sam and his letter were the subjects of much discussion: some thought he was drinking and off his medicine; others focused on his personality, which they felt led him to tell others what to do in a very forceful and domineering way; still others thought he didn't belong in the group because his letter showed he was schizophrenic and not manic depressive. “Ha,” said Jane, “haven't you ever read the DSM? Under its description of manic depression, it says manic patients are likely to throw their weight around where they have no knowledge or authority, exactly like Sam writing letters to the UN.”

Then there are the times that a term from the DSM, throwing the rationality of the person it describes into question, can embroil a group in serious conflict. At another meeting of the same group, Jane came in late wearing a tight T-shirt that revealed her bulging abdomen. She exuded youth and energy with her bright round cheeks and short punky hair.

Well, if you haven't noticed it yet you probably can see now that I am pregnant. I just couldn't hide it anymore. It was getting obvious, so I am dressed to let it hang out. I just felt so guilty over the abortion, I had to replace that child. Yesterday I visited a ten-million-dollar estate, and they are going to hire me as nanny and housekeeper because I have a lot of experience with kids. I will live on the estate, in my own house, which the owner has outfitted with a brand-new inte rior, including a flat screen TV. I will get a car for my own use, and I chose a Mercedes convertible. (They have seven Mercedes, so I had a choice.) The job sounded so perfect that I was hesitant to tell them I was pregnant, but when I did, they were actually pleased, because it meant I am looking for something long term. They just found out they can't have more children, and my child would make a good playmate for their four-year-old. Of course my child will always be mine, that will be made clear and legal. But I will stay there for six years, raise my child, and they will also support my college education while I am there.

In the stunned silence that followed this, another member of the group, Michelle, declared Jane manic and therefore unreliable.

Jane, I know from my own experience that once I didn't tell a very close friend about a cancer test result I had and I am still paying for that. It was very painful and not worth it. It is better to tell the truth, to just stick with the truth. I am not saying I don't believe you. You just sound a little manic-y to me.

Erica directed even stronger comments to Jane: “I don't believe you. I was in the hospital with you when you had your pregnancy and HIV tests, and the pregnancy test was negative.” At this point, Jane interjected, “And it turns out my HIV test is now negative, it only came back positive before because they sent the wrong blood to be tested.” Erica was incredulous: “You mean they tested you positive for HIV and negative for pregnancy and now it turns out the tests are both wrong, you are really negative for HIV and pregnant?! I don't believe you, that is not possible.” At this point conflict heated up fast: a couple of people tried to tell Jane they were glad she was HIV negative, while Erica and Michelle kept repeating that Jane was not believable, but manic. Jane's face turned bright red and she ran out into the hall. In a moment, it seemed everyone in the room was shouting, cursing, rushing out the door and back in again. John, the group's facilitator, tried to calm the group down, again by using DSM categories, but stressing the continuum that runs between them: “Everything is on a scale without sharp breaks, there's schizophrenic, schizoaffective, manic depressive, and so on. Where they are just depends where the elbow nudges them along to. The important thing is to realize we are all human, and that sometimes unfortunately gets lost.” Like Mr. Lawrence in the last chapter, John is owning the DSM categories, using them for his own purposes. For physicians, what matters are the differences among categories; for John, in his capacity of leader of the group, what matters are the commonalities among categories. Stressing the commonalities was his strategy for keeping the group from flying apart.

These are only a few of the many times I saw DSM terms playing an active role in support groups. For a long time it didn't occur to me that alongside the use of DSM terms, no one was describing experientially what their emotional states were like. Looking back on my fieldwork, I now see that an event I participated in early on could have shown me this, if only I had been able to take it in. The event was a regular meeting of a West Coast support group. It was my first time there, so I briefly explained my diagnosis, my fieldwork, and my hopes to write about manic depression. The group was welcoming and asked if I wanted to say anything else. As a newcomer, imagining that such groups sat around discussing their interior states all the time, I plunged in.

I have very vivid visual images and wonder if anyone else has these? [A group member responded, “Like what?”] Well, recently a professor from Europe visited the institute where I work to give a lecture. I was sitting in the audience with a graduate student who has worked with me, when, to our mutual astonishment, the lecturer began to read word for word several paragraphs of a paper I had published as if it were her own writing. I began to feel a strong sense of unreality, and slowly the visual field in front of my eyes became rent as if it were a movie screen being ripped and torn in several places. What I could see through the torn sections was only a black abyss. I knew that the image came from my own mind, but it was so vivid I felt very frightened. The image lasted for over two days, and then slowly faded.

Looking around the room, I saw a lot of very attentive but hard-toread faces. I said, “You are all looking at me as if I were crazy!” Laughter and humorous protestations followed this, and to ease my embar rassment, the group facilitator explained, “It's just that you told a good story.”

After the meeting was over, two people sought me out to say that although they had had similar experiences, they would never have discussed them in the group. One man took me aside in an outdoor gazebo.

I didn't want to say anything in there, because they might think I was smoking the funny stuff, but I have visions, too. I have had them all my life. The way to deal with them is through your dreams. You ask your dreams what they mean and your dreams will tell you. Life is a process of education, and dreams and visions are teaching us. I have precognitive dreams, educational dreams, and others, too. More than once I have been warned in advance about something. I work for the railroad, I am an engineer…. I bet several other people in the room have had the same kinds of experiences, they just don't want to talk about it. I could lose my job if anyone knew.

I now think the group's reaction to my experience came out of their surprise: I was describing the details of a puzzling interior state instead of simply naming it with a standard term and, moreover, I was revealing something that made me vulnerable to loss—of my employment, driving privileges, or professional credibility.

Why would members of support groups avoid describing their psychological states even to each other? One possible reason is that they fear leaks of information that could harm them. But appearing at the meeting at all means, by the criteria for admission, that one has a diagnosis of depression or manic depression. One does not have to say a single word to be exposed to possibly harmful leaks. Another possibility is that the DSM acts as a cloak against further scrutiny. Nikolas Rose writes about forms of psychological knowledge as
“techniques for the disciplining of human difference.”
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He refers to the way psychological tests of all kinds—for intelligence, personality, or cognition—as well as psychological surveys or systematic observations at work, school, or home “individualiz[e] humans through classifying them, calibrating their capacities and conducts, inscribing and recording their attributes and deficiencies, managing and utilizing their individuality and variability.”
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Once people are given a scientific label for their pathological condition, they can use that label as protection against further scrutiny. The terms “Bipolar 2” or “Major Depression Disorder” can bounce from one person to another without calling for examination and so allow people to keep their interior landscape closed to comparison, correction, or calibration against the norm. Instead of acting as agents of their own internalized knowledge, they may be cloaking themselves using the very terms of scientific knowledge. DSM terms, as I suggested earlier, act something like an atomic table of elements for mental illness; they aim to describe the whole universe of mental illness, and every condition can therefore presumably be given a place to belong within it. Using the terms is a shorthand others can be assumed to understand, and this assumption may make further explanation of what lies within actual individual experience seem unnecessary. In this sense, the DSM would act as a shield against revealing more intimate psychic experiences.

A legitimate objection to this line of argument is that there is no testing or surveying going on in support groups, and (except by the accident of a member being a psychologist) there are no experts present capable of such studies. The only people present are “the classified,” individuals who have already been the subject of questions, tests, and observations to determine exactly what form of mental pathology they have. It is possible that my presence could have felt like the intrusion of a scientific observer. But I made every effort to be unobtrusive: I never took notes in meetings and rarely asked anyone questions. With the occasional exception of a few facilitators, I did not do interviews with people from support groups. Furthermore, by the end of the research I was in frequent social interaction with members of many groups, going out to restaurants and movies, and communicating by phone and e-mail. To every extent possible, I behaved like any other member of these groups. More tellingly, when I was new to each group, I would often sit through most of one or two meetings before the facilitator gave me a chance to explain myself. Yet I observed no difference in the pattern of not disclosing interior states between these first meetings and the last meetings I attended some years later. Whether or not people experience the “atomic” character of the DSM acting as a shield against intrusion, I can report that as one participant-observer studying mental states, who attended many meetings hoping for material that would let me interpret and compare interior emotions, I felt foiled by language that both blocked and shielded what I wanted to find out.

However, there is another reason why elaborate descriptions of interior states in support group meetings might have seemed lacking to me. Compared to other support group members, I was probably overtrained to scrutinize my interior emotions. Through the luxury of health insurance from a university medical plan, I had already had years of regular one-on-one conversations with psychiatrists and social workers who taught me how to recognize and describe the nuances of my psychological experiences. Support group members varied widely in how much they had been exposed to this kind of training: although some thought of their bipolarity in psychological terms, many saw it simply as a chemical brain imbalance that could be managed best by psychotropic drugs. For many people, then, scrutiny of their psychic states might have been rather meaningless and uninteresting.