Diagnosis
Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months, and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort, and death—all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.
People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe”—not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of “being with [a schizophrenic] who has seemingly crossed over from the human world to the non-human environment,” because other human catastrophes can bear the weight of human narrative—war, kidnapping, death—but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.
Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is to not be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.
According to the National Institute of Mental Health (NIMH), schizophrenia afflicts 1.1 percent of the American adult population. The number grows when considering the full psychotic spectrum, also known as “the schizophrenias”: 0.3 percent1 of the American population are diagnosed with schizoaffective disorder; 3.9 percent2 are diagnosed with schizotypal personality disorder. I am aware of the implications of the word “afflicts,” which supports a neurotypical bias, but I also believe in the suffering of people diagnosed with the schizophrenias and our tormenting minds.
I was officially diagnosed with schizoaffective disorder, bipolar type eight years after experiencing my first hallucinations, back when I first suspected fresh hell in my brain. I remain surprised by how long it took. I was diagnosed with bipolar disorder in 2001, but heard my first auditory hallucination—a voice—in 2005, in my early twenties. I knew enough about abnormal psychology to understand that people with bipolar disorder could experience symptoms of psychosis, but were not supposed to experience them outside of a mood episode. I communicated this to Dr. C, my psychiatrist at the time, but she never uttered the words “schizoaffective disorder,” even when I reported that I was dodging invisible demons on campus, and that I’d watched a fully formed locomotive roar toward me before vanishing. I began to call these experiences “sensory distortions,” a phrase that Dr. C readily adopted in my presence instead of “hallucinations,” which was what they were.
Some people dislike diagnoses, disagreeably calling them boxes and labels, but I’ve always found comfort in preexisting conditions; I like to know that I’m not pioneering an inexplicable experience. For years, I hinted to Dr. C that schizoaffective disorder might be a more accurate diagnosis for me than bipolar disorder, but to no avail. I believe she was wary of officially shifting me from the more common terrain of mood and anxiety disorders to the wilds of the schizophrenias, which would subject me to self-censure and stigma from others—including those with access to my diagnostic chart. Dr. C continued to treat my condition with mood stabilizers and antipsychotics for the next eight years, never once suggesting that my illness might be something else. Then I began to truly fall apart, and switched to a new psychiatrist. Dr. M reluctantly diagnosed me as having schizoaffective disorder, bipolar type, which remains my primary psychiatric diagnosis. It is a label that I am okay with, for now.
A diagnosis is comforting because it provides a framework—a community, a lineage—and, if luck is afoot, a treatment or cure. A diagnosis says that I am crazy, but in a particular way: one that has been experienced and recorded not just in modern times, but also by the ancient Egyptians, who described a condition similar to schizophrenia in the Book of Hearts, and attributed psychosis to the dangerous influence of poison in the heart and uterus. The ancient Egyptians understood the importance of sighting patterns of behavior. Uterus, hysteria; heart, a looseness of association. They saw the utility of giving those patterns names.
My diagnosis of schizoaffective disorder, bipolar type resulted from a series of messages between my psychiatrist and myself, sent through my HMO’s website.
From: Wang, Esmé Weijun
Sent: 2/19/2013 9:28 a.m. PST
To: Dr. M
unfortunately i have not been doing well for a few days (since sunday)
by end of sunday i was upset because the day had passed in a “fog,” i.e. i could not account for what i had done all day despite having painstakingly [made] a list of what i had done that day, i could not remember having done anything, it was like i had “lost time”; i was also very tired and took 2 naps (i did not take any more klonopin than usual that day, in fact i would say i took less, maybe 2 mgs)
monday i realized i was having the same problem; trouble functioning at work, especially with concentration, i would stare at the same sentence for a long time and it would not make sense; i took a nap on a couch in the office; again i felt the day had passed without my existing in it; by 4 i was unsure that i was real or that anything else was real, also having concerns with whether i had a face, but not wanting to look to see if i had a face and feeling agitated at the prospect of other faces. symptoms cont. today
From: Dr. M
Received: 2/19/2013 12:59 p.m. PST
Ok, just re-read this again—definitely sounds more like psychosis is the problem. Increasing seroquel could be the answer (to 1.5 pills—max dose is 800 mgs). I think you may have schizoaffective disorder—a slightly different variant than bipolar I.
Btw, have you read Elyn Saks’s The Center Cannot Hold? I’d be curious to know your thoughts about it
Years later, I read between the lines of Dr. M’s brief response. She describes schizoaffective disorder as “a slightly different variant than bipolar I,” but does not specify what she means by “variant”—a variant of what? Schizophrenia and bipolar disorder are both considered Diagnostic and Statistical Manual Axis I, or DSM clinical disorders; perhaps “variant” refers to that broad realm, which includes the worlds of depression and anxiety in its geography.
Dr. M tosses in, as though it’s an afterthought, a mention of the most well-known schizophrenia memoir of the last thirty years, written by MacArthur Genius Grant winner Elyn R. Saks. The mention of Saks is a potential buffer for her bad news of a terrible diagnosis. It can also be seen as Dr. M’s way of emphasizing normalcy: you may have schizoaffective disorder, but we can still talk about books. In fact, in four years schizoaffective disorder will be a diagnosis that Ron Powers, in his hefty examination of schizophrenia titled No One Cares about Crazy People, will repeatedly call worse than schizophrenia, and in four years, I will draw exclamation points in the margins and argue with Powers in pencil. And yet there is also a predecessor for me to admire: Saks, who used her MacArthur money to create a think tank for issues affecting mental health, for whom schizophrenia has shaped her calling. Those who like to chirrup that “everything happens for a reason” might point to Saks’s research and advocacy, which likely would never have happened had she been born neurotypical, as part of God’s plan.
This is how the Diagnostic and Statistical Manual (DSM-5), a clinical bible created by the American Psychiatric Association (APA), describes schizophrenia:
Schizophrenia, 295.90 (F20.9)
A. Two (or more) of the following, each present for a significant portion of time during a 1-month period (or less if successfully treated). At least one of these3 must be (1), (2), or (3):
1. Delusions.
2. Hallucinations.
3. Disorganized speech (e.g., frequent derailment or incoherence).
4. Grossly disorganized or catatonic4 behavior.
5. Negative symptoms (i.e., diminished emotional expression or avolition).
B. For a significant portion of the time since the onset of the disturbance, level of functioning5 in one or more major areas, such as work, interpersonal relations, or self-care, is markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, there is failure to achieve expected level of interpersonal, academic, or occupational functioning).
C. Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods of prodomal or residual symptoms. During these prodomal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or by two or more symptoms listed in Criterion A present in an attenuated form (e.g., odd beliefs, unusual perceptual experiences).
D. Schizoaffective disorder and depressive or bipolar disorder with psychotic features have been ruled out because either 1) no major depressive or manic episodes have occurred concurrently with the active-phase symptoms, or 2) if mood episodes have occurred during active-phase symptoms, they have been present for a minority of the total duration of the active and residual periods of the illness.
E. The disturbance is not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.
F. If there is a history of autism spectrum disorder or a communication disorder of childhood onset, the additional diagnosis of schizophrenia is made only if prominent delusions or hallucinations, in addition to the other required symptoms of schizophrenia, are also present for at least 1 month (or less if successfully treated).
Clinicians use these guidelines in order to discern the presence of schizophrenia. Medicine is an inexact science, but psychiatry is particularly so. There is no blood test, no genetic marker to determine beyond a shadow of a doubt that someone is schizophrenic, and schizophrenia itself is nothing more or less than a constellation of symptoms that have frequently been observed as occurring in tandem. Observing patterns and giving them names is helpful mostly if those patterns can speak to a common cause or, better yet, a common treatment or cure.
Schizophrenia is the most familiar of the psychotic disorders. Schizoaffective disorder is less familiar to the layperson, and so I have a ready song-and-dance that I use to explain it. I’ve quipped onstage to thousands that schizoaffective disorder is the fucked-up offspring of manic depression and schizophrenia, though this is not quite accurate; because schizoaffective disorder must include a major mood episode, the disorder may combine mania and schizophrenia, or depression and schizophrenia. Its diagnostic criteria, according to the DSM-5, read as follows:
Schizoaffective Disorder, Bipolar type 295.70 (F25.0) This subtype applies if a manic episode is part of the presentation.
Major depressive episodes may also occur.
A. An interrupted period of illness during which there is a major mood episode (major depression or manic) concurrent with Criterion A of schizophrenia. Note: The major depressive episode must include Criterion A1: Depressed mood.
B. Delusions or hallucinations for 2 or more weeks in the absence of a major mood episode (depressive or manic) during the lifetime duration of the illness.
C. Symptoms that meet criteria for a major mood episode are present for the majority of the total duration of the active and residual portions of the illness.
D. The disturbance is not attributable to the effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.
To read the DSM-5 definition of my felt experience is to be cast far from the horror of psychosis and an unbridled mood; it shrink-wraps the bloody circumstance with objectivity until the words are colorless. I received the new diagnosis of schizoaffective disorder after twelve years of being considered bipolar, in the middle of a psychiatric crisis that went on for ten months. By then, the trees had long shed their dead leaves. But in the beginning of 2013, the psychosis was young. I had months to go of a frequent erasure of time; a loss of feeling toward family, as though they had been replaced by doubles (known as Capgras delusion); the inability to read a page of words, and so forth, which meant that the agitation I felt at realizing something was badly wrong would only go on and on and on and on.
Though the German physician Emil Kraepelin is credited with pinpointing the disorder he called “dementia praecox” in 1893, it was Swiss psychiatrist Eugen Bleuler who coined the word “schizophrenia” in 1908. Bleuler derived the term from the Greek roots schizo (“split”) and phrene (“mind”) to address the “loosening of associations” that are common in the disorder. The notion of a split mind has led to a lousy—as in, both ableist and inaccurate—integration of “schizophrenia” into the vernacular. In a 2013 Slate article titled “Schizophrenic Is the New Retarded,” neuroscientist Patrick House noted that “a stock market can be schizophrenic when volatile, a politician when breaking from party lines, a composer when dissonant, a tax code when contradictory, weather when inclement, or a rapper when headlining as a poet.” In other words, schizophrenia is confusing, off-putting, nonsensical, unpredictable, inexplicable, and just plain bad. Schizophrenia is also conflated with dissociative identity disorder, more commonly known as multiple personality disorder, due to the vernacular use of “split personality” to refer to a disorder unrelated to fractured personalities. And though psychosis is a phenomenon shared by disorders other than schizophrenia, the words “psycho” and “psychotic” are used to refer to everything from obnoxious ex-girlfriends to bloodthirsty serial killers.
Though Bleuler’s coinage is his most enduring legacy, he also went on to conduct the bulk of pioneering work on schizophrenia, including the seminal monograph Dementia Praecox, or The Group of Schizophrenias. As Victor Peralta and Manuel J. Cuesta describe in “Eugen Bleuler and the Schizophrenias: 100 Years After” (Schizophrenia Bulletin), Bleuler conceived of schizophrenias as a “genus rather than a species.” As a concept, the schizophrenias encompass a range of psychotic disorders, and it is a genus that I choose to identify with as a woman whose diagnosis is unfamiliar to most—the shaggy, sharp-toothed thing, and not the wolf.
The DSM is published by the APA, which released its long-awaited, updated “bible for mental disorders,” the DSM-5, in May 2013. Updates to the DSM aren’t set like clockwork; after all, the DSM-IV wasn’t released until 1994, and the DSM-III, which infamously contained the diagnosis of “ego-dystonic homosexuality,” came out in 1980. I’m not a psychiatrist, psychologist, or therapist, but I am a patient whose life is affected by the labels that the DSM provides, and so I was curious to see what, other than the switch from roman to arabic numerals, would change. After all, it is easy to forget that psychiatric diagnoses are human constructs, and not handed down from an all-knowing God on stone tablets; to “have schizophrenia” is to fit an assemblage of symptoms, which are listed in a purple book made by humans.
With the arrival of the DSM-5 came the psychiatric bible’s most significant change: not the actual diagnoses within the DSM, nor the symptoms that make up the diagnoses, but rather the idea of defining psychiatry itself. NIMH, a component of the US Department of Health and Human Services—immortalized by the 1982 animated movie The Secret of NIMH, which depicts the organization as a sinister and unethical entity—shifted the landscape by decreeing that the DSM is “no longer sufficient for researchers,” according to NIMH director Thomas Insel. No longer would the APA and NIMH stand together in a uniform discussion of “what psychiatry is”; rather, NIMH declared that it was, and had been, striking out on its own.
Psychiatry emphasizes a clinician’s judgment as the primary tool for diagnosis. Someone suffering from mental health complaints may first be given a blood test or a brain scan by a primary care physician. If those tests come back clean, it’s the psychiatrist’s role to ask questions intended to suss out whether the sick person qualifies for one of the hundreds of diagnoses delineated by the DSM, all of which rely on groups of symptoms and sighted or self-reported patterns. (The disorders are indexed with decimal numbers, making the endeavor seem even more capital-S Scientific. I spent much of my adolescence squinting at the numbers on my charts, trying to memorize them so that I could look them up later. Schizophrenia is 295.90; my diagnosis of schizoaffective disorder, bipolar type is 295.70 [F25.0].) Humans are the arbiters of which diagnoses are given to other humans—who are, in most cases, suffering, and at the mercy of doctors whose diagnostic decisions hold great power. Giving someone a diagnosis of schizophrenia will impact how they see themselves. It will change how they interact with friends and family. The diagnosis will affect how they are seen by the medical community, the legal system, the Transportation Security Administration, and so on.
The most common complaint about the DSM-5, and the DSM versions that came before it, is that the disorders it lists are based on clusters of symptoms rather than objective measures. I realized just how arbitrary such definitions are in practice while working as a lab manager at the Stanford Department of Psychology, where I ran clinical interviews to assess potential subjects for study. At the time, Stanford’s Mood and Anxiety Disorders Laboratory relied on the Structured Clinical Interview for DSM-IV, or SCID, to determine whether someone qualified for the diagnosis we were trying to research. I went through a year of training, including months of practicing phone interviews, taking a written test, running through a battery of simulated interviews with coworkers, and supervision during several official interviews, until I was qualified to run the two- to three-hour-long SCIDs alone.
To “run a SCID” means taking a potential subject through a battery of questions taken from the SCID binder—a hefty stack of paper with a spine several inches wide. The interview begins by collecting preliminary demographic information, and goes on to run a person through a diagnostic flowchart. For example, “Did you ever hear things that other people couldn’t hear, such as noises, or the voices of people whispering or talking? Were you awake at the time?” moves on to “What did you hear? How often did you hear it?” if the answer is yes. If the answer is no, the next question becomes “Did you ever have visions or see things that other people couldn’t see? Were you awake at the time? How long were they present?” At the end of the interview, the researcher determines the interviewee’s primary diagnosis, and writes it on the front in ink.
In our lab, running SCIDs was not only the most prestigious task an employee could do but also the most emotionally draining. Running a single SCID often meant listening to a litany of someone’s most excruciating experiences and memories. We were not permitted to cry during these interviews, but I often bit back tears during the most intense of them. It was frustrating to see interviewees come in and reveal an underbelly of bloody wounds, only to have to turn them away from participating in the experiments for which they’d applied, and often for what seemed like insignificant reasons. An Eeyore-esque man who wept at random and clearly seemed depressed could be eliminated from our “major depressive disorder” (MDD) subject pool for not meeting the full criteria. According to the DSM-IV, he would need to meet five or more of a list of nine symptoms—including fatigue or loss of energy, weight loss or gain, or feelings of worthlessness—for most of the time during the same two-week period. At least one of the symptoms would have to be a depressed mood, or a loss of interest or pleasure (known as anhedonia). If the depressed person had only four of the nine symptoms, or came into our office at the one-and-a-half-week mark, he would be recorded as “sub-MDD,” because it was not a therapeutic clinic but a research lab, where our subjects needed to be as “clean” as possible—and doing hundreds, if not thousands, of interviews made it clear to me that diagnoses were rarely cut-and-dried.
As a researcher, I lacked the luxury of being able to bend criteria. However, psychiatrists can, given that their job is to ameliorate symptoms and the suffering that accompanies them, rather than to find, diagnose, and study spotless instances of any given disorder. A psychiatrist attempting to make a diagnosis might go through a flowchart similar to the one that the SCID comprises. They might ask, using plainspoken language, the same questions found in the weighty binders I carried from the interview room to the main office; but someone that I would have labeled “sub-MDD” would likely be diagnosed by a psychiatrist as clinically depressed, with a Prozac prescription not far behind. Clinical flexibility has its benefits. It also has the potential for human error, as well as the ability to harm.
With the advent of new technologies and genetic research, psychiatry is increasingly turning toward biology, with NIMH leading the charge. In a press release about the DSM-5, published on April 29, 2013, NIMH spoke about the so-called weakness of the DSM’s categorizations made via observed or reported clusters of symptoms, announcing that “patients with mental disorders deserve better.” Simultaneously, NIMH promoted its own project—a surprise to those outside of the scientific community—called the Research Domain Criteria project, or RDoC. RDoC’s aim, according to the 2008 NIMH Strategic Plan, is to “develop, for research purposes, new ways of classifying mental disorders based on dimensions of observable behavior and neurobiological measures.” In other words: let’s bring more hard science to psychiatry.
Identical twins, according to seminal twin studies in the 1960s, have only a 40 to 50 percent chance of both developing schizophrenia, despite their shared genes. According to the diathesis-stress model of psychiatric illness, a genetic vulnerability to a disorder blooms only if enough stressors cause those vulnerable genes to express themselves. When I worked as a lab manager, we researchers spoke of the possibility that our studies might one day bear practical fruit. Someday we might be able to inform parents of their children’s genetic risk for mental illness, and those parents might be able to employ preventive measures before the first signs made themselves apparent. We did not discuss the practicalities or ethics of taking such action.
Some stressors appear to be prenatal. People diagnosed with schizophrenia are more likely to be born in the winter than in the summer, perhaps due to maternal infection during pregnancy—I was born in the swelter of a Midwestern June. Difficult births, obstetrical complications, and stressful events suffered by the mother, such as assault and war, are also correlated. My head had lodged behind a bone in my mother’s pelvis, which hints of an intergenerational transmission of trauma; stress causes the flooding of cortisol and other chemicals into the brain, and my newly immigrated, newly married young mother had her own psychiatric issues to contend with. Who knows what happens to the malleable and muddy assortment of fetal cells because of such strain?
Once during a train ride in Taiwan with my mother, I asked her about my great-aunt, who I knew had been insane. On the small, pull-down lap desk, my mother placed a notebook and sketched a family tree. She drew X’s to signify those known to have some sort of mental illness. What surprised me weren’t so much the three X’s that did exist—the great-aunt who’d been institutionalized for most of her life, despite having been a first-generation college student, and who lived a tragic existence as the madwoman in the attic; my mother’s cousin who had killed himself, ostensibly after a bad breakup; and, of course, me—but rather how many unknown entities there were, with branches leading to blank spaces on the page. “No one talks about these things,” she said. “No one wants to question what genetic legacies might lurk in our bloodline.” When asked point-blank by my first psychiatrist, over a decade ago, whether there was mental illness in the family, my mother said no, there was nothing. Even now, she doesn’t consider herself an X on the family tree, preferring to keep herself a mild circle, absolved on the page despite her own history of suicidal ideation, panic, and hiding in closets. My father’s side of the family has other concerns, primarily addiction, but is not considered responsible for my so-called bad genes. I’ve inherited a love of writing and a talent for the visual arts from my mother, as well as her long and tapered fingers; I’ve also inherited a tendency for madness.
The APA’s response to this ill-timed potshot from NIMH came in the form of a statement from the chair of the DSM-5 Task Force, David Kupfer. Kupfer publicly responded that RDoC “may someday … revolutionize our field,” but added that people with mental illness are suffering in the present moment. Having biological and genetic markers as diagnostic tools would be wonderful, but “this promise, which we had anticipated since the 1970s, remains disappointingly distant…. [The DSM-5] represents the strongest system currently available for classifying disorders.” Speaking directly to the urgency of public need, Kupfer said, “Our patients deserve no less.”
What is perhaps most interesting about the RDoC announcement, however, is just how complex an RDoC-DSM marriage might become—and it’s a problem that researchers are working on solving. Dr. Sheri Johnson, professor of psychology at the University of California, Berkeley, said to me, “I think we are a long way away from that marriage. RDoC is a fascinating initiative, but it’s really designed to help us understand some of the key neurobiological dimensions involved in mental health. There’s a lot of work to be done … Once we have those dimensions more clearly mapped, it may shift the way we think about diagnosis enough that we won’t really be using the same types of categories that appear in [the] DSM.”
Dr. Victor Reus, a professor of psychiatry at the University of California, San Francisco, and psychiatrist, is similarly skeptical about the use of biomarkers as diagnostic or clinical tools—at least until genetic research grows by leaps and bounds. “I think trying to do biomarkers of schizophrenia as an entity is probably a hopeless task,” Reus told me in an interview, “because there are just so many different ways in which people can develop a syndrome that looks like schizophrenia, or that fulfills the criteria of schizophrenia as we now define it.” And yet this may not be the case for other disorders. “Certain categories,” Reus states, “as crude as they are, are still useful in capturing a group of individuals that probably have more in common in terms of etiology or basic mechanism than they are different. And certain disorders are better than others in that regard. So autism has proven to be a pretty useful thing. Bipolar disorder has proven to be, I think, more useful than schizophrenia. Obsessive-compulsive disorder is probably one of the more specific ones. Major depression is problematic. Generalized anxiety disorder is very problematic.”
As of 2017, NIMH continues to vigorously fund research into the schizophrenias. The 2017 NIMH budget describes an increase of $6 million (up to a total of $15.5 million) for programs designed to address psychosis and its treatment; the goal of initiatives such as Recovery After an Initial Schizophrenia Episode (RAISE) and the Early Psychosis Intervention Network (EPINET) is to “ensure that lessons learned from research and clinical experiences are systematically and rapidly put to use to improve [lives].”
For now, psychiatrists continue to rely on the DSM, and on the DSM-5, which means that changes in the bible of psychiatry continue to affect people’s lives. The definition of “schizophrenia” changed with the DSM-5. Schizophrenia’s subtypes—paranoid, disorganized, catatonic, and undifferentiated—no longer exist in the new DSM, which means, among other things, that pop culture has lost “paranoid schizophrenia” as a diagnosis upon which to hang criminal acts. The five key symptoms are listed as: (1) delusions, (2) hallucinations, (3) disorganized speech, (4) disorganized or catatonic behavior, and (5) “negative” symptoms (symptoms that detract, such as avolition). A person must now demonstrate at least two of the specified symptoms; previously, only one symptom was required. At least one “positive” symptom—delusions, hallucinations, disorganized speech—must be present.
Schizoaffective disorder changed as well. When I first heard that its criteria had been altered, my nerves twitched—had my diagnosis been erased? If the diagnosis hadn’t been erased, would my association with it be, if I no longer fit the criteria? But as I skimmed “Highlights of Changes from DSM-IV-TR to DSM-5,” a PDF created by the APA to accompany the DSM-5’s release, I realized that I still fit the mold. According to the document, “The primary change to schizoaffective disorder is the requirement that a major mood episode be present for a majority of the disorder’s total duration after Criteria A has been met” (italics mine).
In “Schizoaffective Disorder in the DSM-5,” Dolores Malaspina et al. explain these changes by pointing out that psychotic symptoms and mood episodes frequently happen at the same time. A person with bipolar disorder may experience psychosis during a manic or depressive episode; a person with major depression may experience psychosis during their depression. As a result, schizoaffective disorder was diagnosed more often than warranted for a diagnostic category that “was originally intended to [only] rarely [be] needed.”
The new DSM definition of schizoaffective disorder is intended to look at a lifetime of illness, and not an episode of illness; a longitudinal look at schizoaffective disorder means that there must be at least one two-week period of psychosis without clinical mood symptoms, and full mood disorder episodes must have been present “from the onset of psychotic symptoms up until the current diagnosis.” In other words, schizoaffective disorder is intended to be an uncommon diagnosis, and it is meant to be diagnosed based on a lifetime of illness—both of which will be true if the DSM-5 does its job. Under its auspices, I remain a rare bird who, according to the APA, will likely be sick forever. The DSM is what we use to define the problem, yes, but it attempts to do so in a way that accommodates humanity’s wide and nuanced spectrum, which may not be a realistic goal. If I were still a researcher studying DSM-IV or DSM-5 categories, grant proposals to NIMH would need to include something about the implications for RDoC. However, NIMH’s public rejection of the DSM-5 has no impact on me as a layperson, or on my insurance company, my therapist, or my psychiatrist. And although blood tests or brain scans for mental illness diagnoses are either far-off or never to come, RDoC’s first benefits may give us a better sense of what biological features mark susceptibility to already established disorders, as well as what types of stressors are most likely to transform those susceptibilities into illness.
I remain skeptical that we’ll see either outcome in my lifetime. I am accustomed to the world of the DSM, which remains the heavy purple bible-o’-madness that sits on a clinician’s shelf. It is, like the Judeo-Christian bible, one that warps and mutates as quickly as our culture does. The DSM defines problems so that we can determine whether a person fits into them, or whether a person has lapsed out of the problem entirely—which is not to say that their life changes, even if their label does.
For causes and explanations, there are still other avenues to pursue. Nine months after my diagnosis of schizoaffective disorder, when I was beginning to experience serious physical symptoms as well—fainting, chronic pain, allergies, weakness—my psychiatrist sent me to a complementary and alternative medicine (CAM) consult, a division within my HMO. The doctor, a Southeast Asian man, looked at my tongue. He used the Chinese three-finger method of examining the pulse in both of my wrists. He told me that my problem was obvious: it was a classic case of a Fire typology that had burned out of control, therefore explaining my ambitious personality, pain, inflammation, anxiety, depression, and symptoms of schizophrenia. He indicated a few acupressure points that I could try, including one in the dip of my sternum called the Sea of Tranquility. He advised me to eat less meat and fewer spices. I sipped a chai latte from a to-go cup in his office, and between sips I became anxious that he would smell the chai on my breath, and chide me for feeding an already raging conflagration.
Later I consulted Beyond Heaven and Earth: A Guide to Chinese Medicine, by Harriet Beinfield, LAc, and Efrem Korngold, LAc, OMD, which explains that when the Qi of the Fire type is too strong, “the Qi of the Heart can attack the Lung, … leaving the envelope of the skin open and loose, unable to guard the body and contain the Essence and Spirit.” Resulting emotional problems include the person’s “[becoming] restless and sensitive—easily moved from laughter to tears and prone toward melancholy and anxiety.” A condition recognizable as psychosis may also result, as the authors warn about “altered states of perception in which reality becomes plastic and fluctuating.” To identify as a Fire type, in the same way that I might identify as a Myers-Briggs INFJ or a Gemini with Capricorn rising, is to accept the baseline Fire characteristics of being intuitive and empathetic, and believing in the power of charisma, as well as risking the Fire problems of “anxiety, agitation, and frenzy” and “bizarre perceptions and sensations.”
This period of acute and terrible illness in the winter of 2013, ultimately diagnosed in 2015 as late-stage Lyme disease, resulted in genetic testing for an MTHFR mutation, and came with a wealth of extra information. Based on preliminary research of a marker at rs833497 in the DYM gene, my CC genotype places me at “slightly higher odds” of schizophrenia, as opposed to CT (also “slightly higher odds”) or TT (“typical odds”).
Sometimes I encounter people who don’t believe in mental illness. These people may have been diagnosed with depression or anxiety at some point, but are usually symptom-free when I meet them. Often, they claim that such diagnoses are oppressive to those with unique abilities. To these people, “unique abilities” usually suggests those conferred by psychosis. They will cite John Nash, who has said that the same mind that produced his delusions produced his brilliant ideas. I am frequently told with great sincerity that in other cultures, a person who would be diagnosed with schizophrenia in the West might be lauded as a shaman and healer. Have you ever considered, they ask, that schizophrenia might be a spiritual characteristic, and not a malady? Often these people declare that they don’t believe in medicine. They are likely to be the type who boast about never taking aspirin for a headache. I mention these people with some cynicism, but I, too, have wondered if my experiences with psychosis are a spiritual gift rather than a psychiatric anomaly.
In 2014 an astrologer visited me at my cottage in the woods, where I was staying during a writing residency. Since Neptune was conjoined to my ascendant, Saturn was conjoined to Pluto, and Taurus was in my fourth House, she informed me that I was susceptible to intense dreams and psychic abilities. Due to my fragile energetic field, she said, I would be well advised to live a gentle life. Another astrologer, whom I consulted for a second opinion, informed me that the Neptune conjunction is a dramatic placement. “Neptune is divinity; it is access to the gods,” she said. “But no one ever came out of a conversation with the gods for the better, right?”
In 2016 I enrolled in a yearlong program in the so-called sacred arts, also known as syncretic mysticism, or, less accurately, witchcraft. The instructor for the course in magic—a woman with a sweet voice and a lineage of sacred artistry—suggested that I study the liminal, which is the theme running through the psychospiritual claim that I am sensitive to the thin skin between the otherworld and that which we call reality, the “fragile energetic field,” the “access to the gods.”
These are what I call explanations, rather than causes, because embedded within spiritual narratives are ideas about Why with a capital W, providing larger, more-cosmic reasons for the schizophrenias to occur.
We could consider the role of evolution as yet another kind of cosmic reasoning. Researchers such as Steve Dorus, an evolutionary geneticist at Syracuse University and the coauthor of the paper “Adaptive Evolution in Genes Defining Schizophrenia,” devote their careers to investigating schizophrenia’s curious evolutionary persistence. Despite schizophrenics’ reduced reproductive fitness (defined as an individual’s reproductive success, as well as their average contribution to the gene pool), Dorus et al. have noticed that twenty-eight of seventy-six gene variations connected to schizophrenia are actually preferred. One potential explanation suggests that the evolutionary development of speech, language, and creativity, while bestowing significant gifts, has “dragged” along less desirable genetic tendencies with it; from this perspective, schizophrenia is simply the price humanity pays for the ability to write heartrending operas and earthshaking speeches. Another argument: schizophrenics are, evolutionarily, meant to be ad hoc “cult leaders” whose bizarre ideas split off chunks of the human population. This in itself is neither bad nor good, though one’s perspective on the matter could depend on whether one believes cults or cultish ideas are inherently bad or good.
Or we could say that schizophrenia itself has evolutionary advantages. Some have suggested that schizophrenia persists because it promotes creativity, much like the argument emphasized in MacArthur Genius Grant winner Kay Redfield Jamison’s Touched with Fire: Manic-Depressive Illness and the Artistic Temperament. As tempting as this perspective is, I worry that seeing schizophrenia as a gateway to artistic brilliance glamorizes the disorder in unhealthy ways, therefore preventing suffering schizophrenics from seeking help. If creativity is more important than being able to maintain a sense of reality, I could make a plausible argument for remaining psychotic, but the price of doing so is one that neither I nor my loved ones are likely to choose to pay.
In these investigations of why and how, I am hoping to uncover an origin story. Pan Gu the giant slept in an egg-shaped cloud; once released, he formed the world with his blood, bones, and flesh. God said, “Let there be light.” Ymir was fed by a cow who came from ice. Because How did this come to be? is another way of asking, Why did this happen?, which is another way of asking, What do I do now? But what on earth do I do now?
