The Book of Woe: The DSM and the Unmaking of Psychiatry (33 page)

Being with Claudia was like riding a raft through white water. I might be skeptical of the value of the DSM, but I was ready to try anything to channel these rapids into an orderly stream of information, a diagnosis that would grant me the ability to communicate efficiently about Claudia to at least one clinician—me. So I was glad to offer her the opportunity to participate in the study (and the free visit in return), and she, for reasons she never stated, but most likely at least in part because she didn’t exactly know how to say no to men, was glad to consent.

The very next week, after one more visit, one more fruitless attempt to piece together some coherent story out of the fragments of her life, I surrendered my desk and computer to Claudia. Her finger hovered above the mouse frequently as she read over the items, sometimes out loud. She sighed and laughed and, a couple of times, had an extended conversation with the computer (only one side of which I could hear). Twice she came to a complete stop, staring at the screen for a minute or so without scrolling or clicking or reading, transfixed, I thought, by something else entirely. After forty-five minutes, she stood up, made her little bow, and returned to her chair.

I pushed the data. We had our work cut out for us. She’d scored high in all the cross-cutting domains except substance use, where she had a zero—a strange result, I thought, since so many of the escapades she had described in our first session were fueled by alcohol. I fumbled through the diagnostic interview a little less with her than I had with Lee. But then again, I had more time to plot my course through the criteria while Claudia pondered every question closely. She wasn’t sure if she had “feelings of worthlessness or excessive and inappropriate guilt” or “excessive anxiety” or a “distinct period of abnormally and persistently elevated, expansive or irritable mood that lasted 4 consecutive days and was present most of the day nearly every day.” She would give an answer and take it back and venture another, hovering over her response like a checkers player who never lifts his fingers from his piece, until I finally had to say, “Let’s go on,” and she let the last move stand.

Claudia was certain about some criteria. She did not drink too much. She was not confused about sex. And she did not have a “diminished ability to think or concentrate, or indecisiveness.”

I don’t think she was lying. I think she was, as we therapists say, in denial. And who could blame her? She was too mercurial for introspection, and even if she hadn’t been, these weren’t exactly the best conditions under which to reveal her frailties and flaws. I was, after all, still more or less unknown to her, our lack of intimacy at wild odds with my probing, no less so than it is in the gynecologist’s office, only here there was no sheet to cover her, no nurse to hold her hand or distract her, and I was not crouched where she couldn’t see me, but looking right in her eyes as I asked questions made indecent by their detachment from anything real or live between us. Efflorescent inner life rendered as symptom by a stranger wielding the DSM’s computerized language as if it were a speculum: who would not resist?

It had been a little more than an hour since Claudia had relinquished the computer, nearly two hours since we had started this dispiriting adventure. I decided to skip the substance use disorders despite my doubts about her answers and click right to the part I had originally thought might yield something useful, a way to organize my own thoughts in the face of her chaos: the personality disorders section.

At first, it looked straightforward enough. There was ample “evidence of impairments” in her “experience of self as unique with clear boundaries between self and others,” in the stability of her self-image and her “ability to regulate [her] emotional experience.” Yes, she had some problems with intimacy. But how much impairment? REDCap wanted to know. On a scale of zero to four, just how fucked up was Claudia?

Here I was given a choice. I could “proceed directly to rating” and pull a number out of the air, or I could get a “detailed description of levels.” I went for the details, which turned out to be extensive, three pages of description about “identity” and “self-direction” and “empathy” and “intimacy.” Was she a Level 2—“Excessive dependence on others for identity definition, with compromised boundary delineation”? Or did she have the “weak sense of autonomy/agency” and “poor or rigid boundary definition”
of a Level 3? Or was her experience of autonomy/agency “virtually absent,” and her boundaries
“confused or lacking,” which earned her a Level 4? Was her self-esteem “fragile” (Level 3) or merely “vulnerable”
(2), or perhaps riddled with “significant distortions”
and “confusions”
(4)? Was her capacity for empathy “significantly compromised,”
“significantly limited,”
or “virtually absent”? Was her desire for connection with others “desperate,”
“limited,” or “largely based on meeting self-regulatory needs?”

I had no idea. And even if I had, or if I knew how to get this confused and confusing woman to parse it for me, there still loomed thirty pages or so to get through, box after box to check about her self and interpersonal functioning, her separation insecurity
and depressivity, her negative affectivity and disinhibition, the types and facets and domains of her traits, hundreds of boxes, or so it seemed, before I could make my final diagnosis, and, with the authority vested in me as a Collaborating Investigator of the American Psychiatric Association, determine which of the constructs that deserve neither denigration nor worship, that aren’t real but still can be measured from zero to four, that need to be taken seriously enough to warrant payment and maybe a round of medication but not so seriously that anyone would accuse them of existing, which fictive placeholder would join her height and blood pressure and her childhood illnesses and surgeries and all the other facts of her medical life. At which point I realized that no matter what diagnosis I settled on, I wouldn’t so much have tamed her rapids as funneled them into the diagnostic turbines, raw material for the APA’s profitable mills.

I was longing for the pre-DSM-III days when I could have read this paragraph:

This behavior pattern
²⁵
is characterized by ineffectual responses to emotional, social, intellectual, and physical demands. While the patient seems neither physically nor mentally deficient, he does manifest inadaptability, ineptness, poor judgment, social instability, and lack of physical and emotional stamina.

I could have then written down this diagnosis, perhaps cruel but to the point: inadequate personality. Not that
ineffectual
and
deficient
are any easier to define, but at least the DSM-II wasn’t asking me to rate them on a scale of zero to four. At least it didn’t first claim that they were real enough to measure and then insist that they weren’t real at all.

“I think we’ll stop here,” I said.

“How did I come out?” Claudia asked.

It was a totally reasonable question. She’d just invested more than two hours in this procedure. After this kind of grilling, anyone would wonder. And Claudia might have been hoping the same thing I was—that somehow this process would provide some kind of clarity about her.

“Oh, I won’t know right away.” It was only a partial lie. Overwhelmed by the data, I had already forgotten which diagnoses I’d reached, and now that I’d clicked Send, I couldn’t go back and look. I wouldn’t know until I opened the files into which I’d been downloading the forms as we went.

I wanted to ask her how this interview had been for her. I wanted to apologize to her for the inadequacy, the pointlessness, the sheer idiocy of the exercise, for the two hours I’d spent with her during which we had not only failed to get closer to each other or to an understanding of her troubles but actually, I worried, moved further away. It was nearly nine at night. I’d been in my office since eight that morning. So I thanked her for helping me out and scheduled her next appointment and said good night.

I never saw Claudia again. I don’t know why. She just didn’t show for her next appointment and never returned my phone calls. Maybe she decided therapy wasn’t for her, or I wasn’t the therapist she should see. Maybe she ran out of money. But I’ll always think it had something to do with those two hours of flailing about in the fields of the DSM, that my failure to take the measure of her suffering had turned into her failure to measure up, that the futility of the field trial had made the whole therapeutic enterprise seem futile, that when the DSM’s desiccated vocabulary, at least in the hands of a nonbeliever, proved no match for the immensity of her suffering, Claudia had lost that most precious therapeutic commodity: confidence.

•   •   •

Just before Christmas, the APA sent out
Inside DSM-5 Field Trials: Your Voice in Action!
, a newsletter for us participants. “
The journey into the future
²⁶
begins with a few small steps,” it proclaimed. But apparently not enough of us were taking them. “We understand that these steps can be time consuming, or even a bit confusing,” the article continued, “but we believe that the value of training and participating extends far beyond that of the field trials.” It didn’t say exactly what other benefit lay in store for us, but it did reassure us that the APA staff was standing by to help us achieve it.

Farther down the page was the reason the APA had had to resort to badgering us. Of the 5,000 clinicians who had signed up, only 1,000 had so far started training, only 195 had completed the training, and only 70 had enrolled any patients. The newsletter writers did their best to sound upbeat—“in fact, nearly 150 patients have joined the study,” they wrote, leaving out the fact that the goal was 10,000—but anyone with a calendar could see the problem. More than a year after the sign-ups began, three months after Kupfer and Regier had sent out their plea for cooperation, and only two months before the data had to be in, the RCP trials had scarcely begun.

That look at the calendar revealed an even more disturbing problem. The APA had originally planned two sets of field trials—the first to reveal the bugs, the second to make sure they’d been shaken out. The second phase was originally scheduled to end in February 2012. But even though the academic center field trials were progressing better than the clinician version—and by some accounts were largely finished, although no one would say—their findings still weren’t in, and no release date had been given. Neither had the APA announced the inevitable result: that the second phase would have to be canceled if the DSM-5 was to be published on time. That news had just appeared when a new timeline was posted on the website.

Something else had shown up quietly on the website. The banner at the bottom of every page, which, as recently as July 2011, had proclaimed that the APA represented “38,000 physician leaders in mental health,” had been changed. The organization now represented only 36,000 doctors. And at the end of 2011,
the treasurer delivered grim news
²⁷
to the remaining members: Annual income from the drug industry, once $18 million, was now only $4 million. Meeting revenues were off by $1.6 million. Ad revenues had sunk to $6 million, off their high of $10 million. Membership dues were down by $500,000. Thanks to cuts in expenditures, the APA was still running a surplus of about $2.85 million, but, the treasurer reported, “this is due to a [$5.6 million] surplus for American Psychiatric Press,” whose most profitable property was, as it had long been, the DSM. Without the DSM, in other words, the APA would have lost nearly $3 million.

These numbers only strengthened the concern among critics like Frances that in its haste to freshen its cash cow, the APA was trampling over science. That, of course, was impossible to prove, but one thing was clear: toward the end of 2011, the APA was patrolling its intellectual property lines more vigilantly than ever, as a woman in England found out the hard way. For a couple of years, Suzy Chapman, a patient advocate, had been
running a blog called
Dsm5watch
²⁸
. Chapman, a caregiver for a patient with chronic fatigue syndrome, was interested primarily in developments related to CFS, but her blog covered the entire revision process (as well as that of the International Classification of Diseases). Unlike the APA, which removed old criteria and timelines as it changed them, Chapman had preserved excerpts from earlier iterations of the DSM-5, and her website, which also collected news and opinion pieces about DSM, had thus become one of the largest and most reliable repositories of revision-related information on the Web.

This may or may not be why, on December 22, she received a letter from Cecilia Stoute, the licensing and permissions manager of the American Psychiatric Press. It wasn’t a Christmas card.

“
It has come to our attention
²⁹
,” Stoute wrote, “that the website http://dsm5watch.wordpress.com/ is infringing upon the American Psychiatric Association’s trademark DSM-5 (serial number 85161695) and is in violation of federal law by using it as a domain name.” Chapman’s “unauthorized actions,” Stoute continued, “may subject you to contributory infringement liability including increased damages for willful infringement.” To avoid that outcome, Chapman must “immediately cease and desist any and all use of the DSM-5 mark” and remove it from her domain name.

“
I thought it was a hoax
³⁰
,” Chapman told me—an impression reinforced by a second letter she received, this one instructing her to remove the DSM-5 mark from a second website, as well as a Facebook page and a Twitter account. But those domains didn’t belong to her and never had. They were run by the psychologists who originated the petition. Those sites remained online despite the APA’s copyright, as did Dsm5.com, Newdsm5.com, Dsm-5diagnosis.com, Dsm5band.com (
INSANITY NEVER SOUNDED SO GOOD!
), and even Dsm5sucks.com.

But no matter how outlandish the claim or how selective the action or how shaky the APA’s legal grounds, and no matter how much the move reeked of intimidation, Chapman felt she had no choice but to comply. “
I could not finance a legal wrangle
³¹
with the APA,” she told me, adding that she feared that her blog’s host would remove her site at the first sign of trouble, wiping out years of work with a single keystroke. So she changed her blog name to
Dxrevisionwatch
. As she feared, the new URL caused her readership to plummet to nearly zero—but not for long. On January 3, Frances wrote about Chapman’s travails in his
Psychology Today
blog. Within a couple of weeks, traffic to her website was double its pre-putsch levels.