Bipolar Expeditions (16 page)

Doctors often shared this desire for patients to monitor themselves. Publications well known among support group members, such as psychiatrist Peter Whybrow's
A Mood Apart,
describe the importance of self-monitoring in manic depression. Whybrow enacted the thoughts of a hypothetical patient for me in an interview.

If I look back over the last week, I've had increasing shortened sleep, my energy is beginning to pick up, I'm thinking faster, and I'm interrupting people. There's no reason why a thoughtful person can't say, “That's the beginning of the mania—I'm going to increase my lithium, and I'm going to insist that I stay in bed even though I'm not asleep, for seven hours. I'm not going to go out tonight and stay out until two a.m.,” and so on. So individuals then become their own gatekeepers.

Whybrow is imagining the patient detecting the early symptoms of a manic episode and taking measures, medicinal and behavioral, to prevent it from entering the “gate,” that is, becoming full-blown.

In contrast to their reticence in support groups, people use Internet newsgroups devoted to manic depression to delve into the effects of drugs and drug interactions, comparing their experience and knowledge. In this context, many people clearly see the manic-depressive person as the “manager” of the shifting cocktails of drugs that have become the preferred mode of treatment for their condition. For example, one writer responds to a message in a newsgroup on manic depression from a person who is considering not taking her medication anymore in the following way:

First of all I understand how in times of distress and frustration your drug therapies are seemingly useless and pointless. However if you were only diagnosed in May of this year you couldn't possibly have tried even a majority of AD's [antidepressants] because many if not most require a 4–6 week optimization period. Others require increases in titration in 2 week intervals after assessment. I've been through about 14 different AD's over the past 3 years and I've still got tons I haven't checked out. The point is that don't give up on thinking you'll find the right cocktail blend for you no matter how concerned and impatient you are for results. Bipolar isn't like a normal situational anxiety that is often medicated by tranquillizers. We're talking about finding the right control and balance of Serotonin, Norepinephrine, Dopamine. That all takes time and can be masked and distorted by the use of other over the counter meds, alcohol, [and] caffeine, not to mention other social drugs.
⁶

This message, another example from an Internet newsgroup, responds to a person who had an unfortunate experience with her psychiatrist.

A person can have a biochemical imbalance, but that doesn't mean that the rest of the world is sane. For me, getting my biochemistry stabilized makes it easier to cope with an insane world. That doesn't mean it numbs me to the reality of how messed up my environment is. On the contrary, it gives me the stability to cope with it, and the energy and focus to do what I can. I have my own biases too. For years, I subscribed to the “willpower, not pillpower” theory. Somehow, I thought it made me less of a person to be a “mental patient on mood stabilizers.” I blamed all my problems on a bad environment and a messed-up personality. I hated myself for not being able to control my moods no matter how hard I tried, and it seemed like just as I had things under control, for no reason at all I'd lose control again. One therapist implored me to see a psychiatrist, saying, “If willpower alone could have cured you, you would've been cured years ago.” I had to get to the point where I lost my career, my friends, and almost my life before I finally saw a pdoc [psychiatrist]. I am so glad I did now. I no longer see myself as less of a person for being on meds. I feel stronger than ever. I'm lucky now. I have a pdoc (middle aged male) who respects me as a human being and sees me as a competent, talented person, not just a mental patient. When I told him I was doing my own research on BP [bipolar], and networking with local support groups, he asked
me
for the resources. But I still take my medication which he prescribes. I do not see myself as “dependent” on him. I see myself as taking responsibility for myself by taking my medication as prescribed, being honest with my pdoc about my symptoms, and doing what I can to control my symptoms and live a full life.
⁷

And this newsgroup posting responds to a question about a particular medication.

I've been on Neurontin for two years now. I asked to try it for both mood stabilization and to help control chronic pain. It is one of the things in my arsenal that helps keep my emotions on a more even keel. I ramped up to 3600 mg of Neurontin—that was best for the pain, but it was not so good for my mood. So, I backed down to 2400 mg/day—which works best for me. But, it did not do enough for my mood. So I added 10 grams of cold pressed flax seed oil/day. I was already taking trazodone and lithium. The combination of all of them and massive doses of all b-vitamins has brought me a
long
way to better control of my emotions and my behavior. Neurontin has a half life of 6 hours—so it should be dosed every six hours for mood stabilization—otherwise—you will see no benefit from it. IOW [in other words] Neurontin does not build levels in your body like other medications. I will not give up Neurontin—it has been a godsend for me. I get a bit shaky or clumsy sometimes, but well worth it for the benefits.
⁸

In these messages, the writers try to convince their correspondents to continue taking medication by arguing that a person on drugs for manic depression does not lose control to either the drugs or the prescribing doctor. A person can remain in control, active and responsible: in the terms introduced here, the person can retain full personhood and agency through the ability to make autonomous, rational choices about which drugs to take.

In my fieldwork, in settings other than support groups, I observed professional psychiatrists or psychologists striving to help “mentally ill” patients retain or recover the hallmarks of full personhood and rationality, especially the ability to carry out self-monitoring. However, their efforts were often somewhat ambivalent, reflecting both the easy slippage across the line between rationality and irrationality and the great social distance between doctor and patient. At one conference I attended annually during my fieldwork, the meetings of the patient advocacy organization, NDMDA, researchers, clinicians, advocates, and patients lectured, listened, and held discussions on different aspects of manic depression. Many lecturers had understandable problems finding a voice that could include everyone in the audience. In one lecture, Charles Nemeroff, an eminent psychiatrist who does research on manic depression, began by including patients with manic depression in the audience in his remarks: “How do you live with a tiger in your tank? You have to balance denial and comfort against terror of the beast. We all end up with foibles and weaknesses we have to deal with.” But he then marked a clear line between himself, other researchers, and drug developers, on the one hand, and patients with manic depression, on the other. His point of reference shifted to make it clear there was a line across which he was talking. People on the other side of the line did not have just ordinary foibles and weaknesses: they needed an alliance with psychiatrists who could “know” and manage their illness.

What is it like to have a disorder where you are energized when you don't want to be, where your idle is too high, and then where you come close to despair for reasons that are not clear? You know that eventually you will get a combination of three or four meds that will work for you. But what is different about manic depression is that it is always changing over time. Unlike depression where you only need to step on the gas, manic depression needs both brakes and gas.

Up to this point, Nemeroff had been speaking in a way that included the people living under the description of manic depression who were present in his audience. In the next few sentences, he made abrupt shifts that excluded them, included them, and then excluded them again. Excluding: “Too often the plunge has already happened when we [doctors] are trying to manage it.” Including: “So you need a health care ally.” And then excluding again: “My family is used to patients calling all the damn time. How else can you take care of these people? We need the understanding that they may have a fuller cup when well [i.e., they may operate at a higher level] than most people. So the stakes are higher in treating them.” He asserted that people on the other side of the line needed to have drugs residing inside them to achieve even a modicum of rational self-monitoring.

When drugs are well established, a partnership can be established, in which the patient is granted partial and temporary control over himself. Self-knowledge is critical and this is why therapy is moving into psychological education. Knowledge is power! These meetings are for that purpose: not to help doctors dictate to patients from on high, but to help patients collaborate with their providers. They are to facilitate self-control and self-actualization. I try to move quickly to ways patients can even adjust their own dose of medications—for example, high-powered attorneys who have to try a case in court might want to have less medication onboard that day. If I have worked with them long enough and have trust in them, they can be in control of their medications for that day. This enhances their sense of control.

Dr. Nemeroff was speaking to an audience that included a good mix of physicians, patients, and patient advocates, so it is no wonder his point of view shifted. That he could shift between himself and his manicdepressive patients so frequently indicates the line may be easier to move than we think.

The two patient advocacy organizations I studied, which were to varying degrees run by people with the diagnosis of manic depression, provided rich ground for considering whether people assigned to the “irrational” space of mental illness were thought to be capable of managing their own or others' behavior. In both organizations, the facilitators of weekly support groups were self-selected members who underwent specific training provided by the organization. I took the elaborate course of training offered in Baltimore during my fieldwork. In the training sessions, there was often explicit commentary on the unruliness of manic depressives, their need—at times—for management by others. From a leader (with the diagnosis of manic depression) who had come back for a refresher course:

I have learned over time. It used to be total chaos, more than one person talking at a time, and there I am not doing anything about it, or it's all jokes and then all of a sudden someone is crying. You get three or four manics at one time. I will tell you the whole skill of moderating is get the manics to shut up and the depressives to talk, but they censored me on this! If you are manic, you gotta shut up, because if you are manic you can't shut yourself up.

This leader is positioned in between: he is charged with managing a group of people who are deemed unmanageable because of a diagnosis he shares, and like Dr. Nemeroff he has to keep moving the line between those who need management and those who do not.

In an interview with me, the county president of the California patient advocacy organization, DMDA, explicitly cited the common association between manic depression and unmanageable disorder as the reason “ours is an organization that was created primarily by the patients themselves.” She explained,

Our chapter here got started because four or five psychiatrists from this area went to a psychiatric convention and that was where [they heard] the national DMDA was getting started. They thought it was a terrific idea, so they came back here and talked among themselves. Then they just picked a day and told their patients to come if they were interested. Right from the beginning it was very important that DMDA remain a patient organization because there was a kind of pride that it was the only organization of this kind that was patientorganized and run. So we were making a statement that, “Yes, we have this illness but we can function.”

Thereafter, on the West Coast, psychiatrists immediately handed over control of the organization to patients.

But on the East Coast, Ray DePaulo, the psychiatrist who primarily helped launch the other advocacy organization, the Depression and Related Affective Disorders Association (DRADA), hesitated to do this. DePaulo, whose main research is on bipolar genetics, told me that the idea to form an organization came after he gave a talk on bipolar disorder to another organization, the National Alliance for the Mentally Ill (NAMI), which mostly concerns itself with the needs of schizophrenics and their families. Eighty families came to his talk, hungry for more information about bipolar disorder. He explained, “They had been trying to read the psychological and psychiatric literature themselves.” Stimulated by his talk, a wealthy local businesswoman whose son was bipolar gave the initial seed grant for a new organization. At first De-Paulo imagined they would model their organization on the West Coast DMDA, but he came to doubt that DMDA's insistence on being patient-run would work: “You know how they only have patients, no doctors or professionals? We couldn't work with them.” So DRADA came to be organized independently and along different lines. Even so, one early donor and organizer shared some of the qualities DePaulo worried about in DMDA members: “She was one of those hyperenergized people, definitely on the irritable edge of things, not quite managing the hyper side. She would call you eight times a day. There was this energy and passion. At first her husband would keep her under control. But when he retired, then they both got irritable.” Eventually, appointing a board and enlisting the organizational help of a social worker resolved this start-up problem. DRADA has thrived and now has chapters in several states in the Northeast, as well as strong links between its membership and psychiatric research projects.