Psychopathology, Exhaustion, and Identity

Diagnostic manuals cannot tell us who we “really” are

“What we all—clinicians and patients alike—want from diagnosis is relief from the Sisyphean burden of understanding the relationship between our bodies and our intentions. Why we suffer in the aftermath of great success, why it is so hard to lose weight, why our drinking habits are so hard to change, are questions of such enormous philosophical, clinical, and personal difficulty that they eventually exhaust us, once again doctors and patients together… If it sometimes offers us relief from our collective clinical and personal uncertainty to act as though human struggles are just diseases, and our efforts to overcome them just treatments, so be it. I wouldn’t want to deny anyone the professional security or personal comfort that comes from believing that it is so, but at the same time we must bear in mind that it is also an oversimplification.” Eric Turkheimer, What do we want from a depression diagnosis?

“In looking to the current state of psychiatry and cultural understandings of mental disorder, I identify what I call being “epistemically adrift” – the sense that individuals face too many conflicting opinions and a constant debate of how to live with depression that they are unable to process for themselves what their best options for living are. This feeling of being epistemically adrift is all the more complicated by the experience of mood disorder itself, which often makes individuals feel morally inadequate and pressured to do the right thing without clear direction.” Jake Jackson, Epistemically Adrift: Mood Disorders and Navigating Responsibility

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I thought of Tukheimer’s “questions of such difficulty that they eventually exhaust us” and Jackson’s “epistemically adrift” as I read Lauren Oyler’s essay “My Anxiety” in the New Yorker (drawn from her book No Judgment). Oyler’s piece is self-conscious, memorable, and witty, and if you haven’t read it, you should.¹

Whereas the exhaustion described by Turkheimer leads one towards a clinical diagnosis, Oyler’s exhaustion pushes her in the opposite direction… the enterprise of formal diagnosis and treatment is so rife with complications that it just doesn’t seem worth the effort. Oyler writes, near the end of the essay:

“I do not want to have these problems that are notoriously difficult to solve, about which there is no professional agreement. I do not want to embark on a years-long project dedicated to my own mind. I have other things to think about.”

The irony is that there is no escape. She doesn’t want to embark on a years-long project dedicated to her own mind, but she already has, and she knows it—what is her essay if not a record of such a project? She doesn’t want to have problems that are notoriously difficult to solve and about which there is no professional agreement, but she does, and she can hardly ignore them.

“… if I were to seek a medical diagnosis I would get one, handily. The question “Why don’t you?” naturally arises. The answer is that I do not feel it would help, and might even create more problems than it solves. In medicine, the problem of language is a problem of classification; I do not seek a diagnosis, probably, because I do not want to be trapped in a single term. (I hate being trapped, you might have noticed.) Like everyone else’s, my mind dabbles in an array of mental illnesses to create a bespoke product, and I find all the terms I know either ludicrously broad or ludicrously specific.”

A diagnosis is not meant to trap, but in our world it sometimes does. This is less a function of diagnosis itself and more a consequence of our social and psychological relationships to categories. We are all conceptual masochists: categories do not seem “real” to us unless they trap us.

“I have tried talking to someone; it’s fine… if I express my doubts about the possibility of transcending the workings of my own mind by paying someone to guide me through the process, the response is unanimous: I must find a new therapist, someone who is “right” for me. They wonder, gently, gently: Is it possible that I, so high-achieving, am unconsciously telling the therapist what I think he wants to hear—deceiving him by being adequately emotional, apparently reflective, in order to give true self-knowledge the slip? Should I not find someone meaner, nicer, female, more intellectual, less intellectual, someone who will not fall for my tricks?

Or: I must try a different therapeutic approach. A bit of research quickly reveals an expanse of options: somatic-experiencing therapy, cognitive behavioral therapy, dialectical behavioral therapy, integrative therapy, gestalt therapy, humanistic therapy, psychodynamic therapy, exposure therapy, shock therapy, biofeedback, counselling, coaching, one of the innumerable schools of psychoanalysis. At a wedding, I was strongly recommended E.M.D.R….”

Oyler is talking about psychotherapy in this passage, but this is an aspect of a general problem with mental healthcare. If one’s experience with a treatment is less than optimal, if it leaves the person without substantial understanding or relief, what has gone wrong? Is it because the diagnostic frameworks are a mess? Because psychotherapy and medications just aren’t that effective? Because the person hasn’t found the right clinician? Because there are too many treatment options, and we have to proceed by trial-and-error in ignorance of what will actually help? Because the patient is too unconsciously devoted to staying unwell? Any or all or none of the above? How is someone to know? For a substantial number of people, starting treatment – whether medication or psychotherapy – leaves them further adrift.

“A psychiatrist might prescribe medication, a fraught topic. It’s hard to write about medication without having taken it oneself, which I have so far resisted. I’ve tried a couple of popular pharmaceuticals recreationally and find I am more afraid of them than I am of illegal club drugs; they really work. While I have no idea what it’s like to be on psychiatric medication long term, no one else can say what it’s like, either; the medications famously interact with each person differently, so there is no way to understand them as an experience except through trial and error. The possible side effects are sometimes just as bad as the symptoms they’re supposed to alleviate. The process of stopping these medications, which many patients want to do, is criminally under-studied and requires a painful period of weaning that comes with prohibitively bad side effects, too. (To start antidepressants is to sign up for some future moment when you won’t want to take them anymore, and to have to decide whether you want to experience “brain zaps” in order to stop.)

At the same time, they often help. Criticize what you believe to be the craven overprescription of psychiatric medication in the United States and someone on the Internet will take personal offense: Wellbutrin saved my life!”

Psychiatrists, like most physicians, are trained to reassure patients about possible risks. Many act as if the only reasonable decision is to take medications. Many psychiatrists remain more worried about potential adverse effects dissuading patients from starting medications than with the recognition and treatment of those adverse effects.

For many patients, this strategy works out. But not everyone. There is a small, although not well quantified, number of people who experience serious or protracted harm from psychiatric medications. And to make it more complicated, the same person can be helped and harmed at different points of time. Neither clinicians nor patients quite know how to meaningfully take the risk of serious adverse effects into account. “Informed consent” relies on providing information to the patient, but everyone processes this information differently. One person can focus on the possibility of substantial relief and another may focus on the possibility of harm. We tend to either underestimate the risks of medications, delegating them to the sort of background risk we accept in daily life or we tend to overestimate them to the point of deterrence.

There is an additional difficulty. A feature of psychiatric problems is often ambivalence, which comes in both neurotic and psychotic flavors. Patients can find themselves unable to decide, paralyzed by fears and worries, and sometimes by profound despondency. And the irony is that the only way to potentially find out whether one’s indecision is a feature of psychopathology is by taking the treatment. If you take Lexapro and your ambivalence evaporates, well, there you go.

When I was in psychiatric training, I found it frustrating that so few of my supervisors were genuinely open to the possibility of their patients not being on medication. Resistance to medications was often seen as unreasonable, based on erroneous fears about adverse effects or stigmatizing and moralizing views about mental illness. Patients had to be guided and cajoled into making the right decision.

I don’t share that view. I think it is perfectly reasonable for someone to decide that a medication is not for them given their potential adverse effects even if they are more likely to benefit from it. And yet this doesn’t happen as often in actual clinical practice as one may think. Most patients who make their way to me are those whose suffering has reached a point where they are desperate for some form of relief. That makes the decision easier. I sit with despairing patients who feel lost and hopeless, who cannot see a way out of their misery, and in that vulnerable state, I have to be the bearer of hope for them. But for patients who are suffering and who can function just well enough to go by, gauging the potential benefits of treatment vs potential risks can be very difficult. Clinicians are—by training, by temperament, by context—biased towards offering treatment. Often the only corrective to this bias in the clinic is hesitancy on part of the patient. (Medicine and Skin in the Game)

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In another recent article for New Yorker, Manvir Singh writes about how we’ve turned psychiatric labels into identities. He discusses, referring to Ian Hacking’s work, how revising the DSM at times “requires destroying kinds of people.” He discusses 3 books that “illustrate how psychiatric classification shapes the people it describes. It models social identities. It offers scripts for how to behave and explanations for one’s interior life. By promising to tell people who they really are, diagnosis produces personal stakes in the diagnostic system, fortifying it against upheaval.”

Singh points out how thriving communities developed around the diagnosis of Asperger’s: “A community created by a label sought to keep that label alive and, barring that, to maintain their inclusion in the system writ large.” The author of one memoir “craves diagnosis and uses clinical labels as a framework for self-understanding. But the fit is always awkward, and the implications are disheartening.” Another author, a psychologist, wants to “reject the naming of things once and for all… To at least consider the possibility of leaving the world of categories behind.” And yet, as Singh notes, he finds himself forced to inhabit the categories as an expert and a clinician because the “market demands it.”

A lot of discussion is centered around DSM as a flawed manual. If only we had a more scientific manual, we wouldn’t have these problems, right? “If the existing taxonomy is such a mess, what would a better diagnostic system look like?” Singh asks and discusses HiTOP as an emerging alternative. But he has reservations:

“Any new psychiatric taxonomy develops in the shadow of the old. It must contend with the echoes of the previous scheme, with people whose selves have been cast in the shape of their former classification. By failing to take these into account, models such as hitop risk re-creating the categories of their predecessors. Psychiatric diagnosis, wrapped in scientific authority and tinged with essentialist undertones, offers a potent script.”

The fundamental mistake here seems to me to be our collective failure to distinguish between the clinical and scientific goals of a classification of psychopathology and the process of self-understanding and self-identification. DSM, ICD, HiTOP, RDoC, none of them are designed to serve as a basis for a person’s identity. None of them are trying to tell people “who they really are.” The fact that we have used diagnostic manuals for this purpose has been a disastrous mistake in my opinion, an error of immense proportions, one with which we are just collectively beginning to grapple. And it would be yet another disaster if we turned HiTOP constructs into personal identities.

Psychiatric states do tell us something about a person, so it is natural for them to have a bearing on the process of self-understanding, but that is a different matter from considerations of scientific validity and professional reliance on operationalized criteria. If a person has pervasive difficulties in social communication and restricted, repetitive patterns of behavior, this will undoubtedly be relevant to that person’s self-understanding (“What would this diagnosis mean to you?” I once asked an adult who suspected they had undiagnosed autism. They replied, “I have been a freak my whole life. I have never felt normal. People have always treated me differently. If I am autistic, all of this would make sense to me.”) Similarly, if someone has a life-long pattern of attention-deficit, or a chronic, recurrent form of psychosis, or they experience manic and depressive episodes, this is all relevant to making sense of one’s existence. But this has nothing to do with operationalized criteria for clinical use, or with whether etiological mechanisms converge onto a discrete disease state, or whether the conditions are coded in a manual or not.

The Asperger’s controversy would’ve been the perfect time for people to say, “You know what, our social identity as Aspies doesn’t depend on the continued existence of the official category of Asperger’s in a diagnostic manual subject to frequent revision.” Who gave a medical manual the power to destroy social identities?² Homosexuality did not disappear as an identity (only as a pathology) once it was removed from the DSM.

To believe that medical diagnoses have this social power creates the conditions in which one can be trapped by a single term. It creates the situation where the consequences of a formal diagnosis become so momentous that one can spend an eternity debating whether one would be helped or harmed by it.

In the clinic, I often find myself explaining to my patients why they shouldn’t take the exact diagnosis I am giving them too seriously. These problems are too fuzzy, too fluid, too pervasive, too dynamic. At times I find myself trying to explain dimensions and feedback loops to patients. I talk about symptom patterns existing in the context of personality structure, childhood trauma, and life stressors; “such patterns often don’t fit into distinct categories very well,” I might say. Once in a while a patient tells me they have a “chemical imbalance” and I usually say something along the lines of, “It’s a helpful metaphor for a lot of people. But it’s not literally true. Things are more complicated than that.” Sometimes people come to me with past diagnoses that I don’t quite agree with. They may have been diagnosed with, say, “bipolar disorder” and I explain why I don’t think this diagnosis quite applies, and why I am going with, say, “unspecified mood disorder” (F39), a diagnosis that means little to most people. It’s difficult to build an identity around “unspecified mood disorder.”

In other words, I am conscious of what can go wrong when people build identities around diagnoses and consequently I try not to encourage that. I explain the messiness and complexity of psychopathology in the hope that it confers some resistance. I try to convey: This is a symptom cluster with a complex, multifactorial etiology; it is relevant to who you are, but it is not the sort of thing you should simply accept as a foundation for your personhood; you don’t have to dismiss it, but you should not be constrained by it; it is only one element of a rich story you can tell about yourself. And precisely for that reason, this explanation is at times deeply unsatisfactory. While I am trying to prevent reification of diagnosis and while I am emphasizing that their problems exist in a background of personality, trauma, and life stress, what I am not doing is telling them who they really are. For better or worse, people to have figure out for themselves who they really are and whether their identity has a lot or very little to do with any diagnostic label. Who am I to decide?

There is just one problem… no one quite knows how to sort out one’s identity, and how to do it well, in the context of mental health problems. We are not born with an accompanying manual for self-understanding and self-identification. Making sense of one’s identity in the context of psychopathology is a question of such enormous difficulty that it eventually exhausts us. Sometimes acting as if diagnostic labels are identities offers tremendous relief from uncertainty, and at other times, we are so worn out by the thought of having problems-that-are-notoriously-difficult-to-solve-and-about-which-there-is-no-professional-agreement that we simply give up.

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See also:

“Shut Up and Treat”

People Are Stumbling From One Misguided Narrative About the Medical Model to Another

Diagnosis as Self-Understanding & Self-Alienation

Are Critiques of DSM/ICD as Devastating for Psychiatric Diagnosis as Some Critics Seem to Think?

1. Plus, the symptoms described by Oyler are fascinating, and sure to intrigue clinicians and readers. For example:

“When I lie down, I don’t actually rest my head on the pillow; instead, I hold it slightly aloft, so that it touches the pillow but, instead of sinking into the soft material, remains hovering above it. To an observer I would seem to be lying down normally. I tell myself to relax—among other issues, I’m worried I’ll develop a thick neck. When I do, I’m shocked at how much I had just moments before been not relaxing. This is sleep, I think. This is what going to sleep actually feels like. But soon I find my head has risen above the pillow again, and I must admit to myself that I don’t know what going to sleep actually feels like.”

2. Certainly, access to medical treatment and accommodations are reasonable worries and appropriate targets of lobbying, but there is no need for a social identity to be dependent on them.