One of the many things that I am grateful for when it comes to my podcast, WITH WHIT, is the platform it has become for discussing mental health. I recently spoke with Sarah Fay (PhD, MFA), an activist and author of PATHOLOGICAL: The True Story of Six Misdiagnoses. Her book calls for a new conversation about mental health diagnosis based on rigorous transparency. Below you will find a beautiful excerpt! With exquisite detail and a precise presentation of facts, she digs up her own life at the root to finally ask, Is a diagnosis a lifeline or a self-fulfilling prophecy?
During our conversation on my podcast, we talked about pill shaming, over-identifying with a diagnosis, the possibility of recovering from a mental illness, and more. Listen wherever you get your podcasts or at the links below!
PATHOLOGICAL by SARAH FAY
Excerpted from PATHOLOGICAL by Sarah Fay. Reprinted with permission from HarperOne, an imprint of HarperCollins Publishers. Copyright 2022.
This isn’t a classic mental-illness memoir. That kind of memoir is a quest story. From the beginning, our hero is exceptional. She’s a debutante or a celebrity or a genius or at the very least she attends an Ivy League school when her enviable potential is dashed by mental illness. Her journey is extreme. She must leave the ordinary world in search of the elixir that will ultimately cure her. Trials hinder her attempts to find it. She’s committed to a psychiatric facility. Or she becomes a professional mental patient, a victim of the psychiatric industrial complex. Of course she triumphs, ending up in the light, elixir in hand: accepting medication or getting off medication; finding true love or God; discovering her illness was physical (thank goodness!), not mental after all; devoting herself to meditation or some other supposedly natural remedy; or finding a brilliant physician or freethinking therapist who saves her. On the book’s final pages, she’s no longer ill or has embraced her illness. She’s rejected her diagnosis or accepted it.
My path wasn’t that clear. I went to a good university and may or may not have shown promise. I wasn’t a professional mental patient. I wasn’t a victim. Doctors didn’t find a physical cause. Many elixirs were tried: food, alcohol, exercise, various therapies, “natural” remedies, and, finally, psychotropic drugs. The result was pain, monotony, confusion, and messiness.
Yes, I was told—with certainty, one after another—I had anorexia, major depressive disorder (MDD), anxiety disorder, attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), bipolar disorder. Yes, I almost died.
But I was a willing participant. No one brainwashed me. I believed in and accepted those six diagnoses—adopted them, thought in terms of them, identified myself as them, medicalizing my difficulties and discomforts, pathologizing my emotions and thoughts and behaviors.
Embracing a diagnosis can be a good thing. It can increase the likelihood that a person will get help. It can lead someone to find a community of people who suffer from the same diagnosis. It can empower a person.
But it led me into a spiral. Each diagnosis was a self-fulfilling prophecy. The sicker I believed myself to be, the more evidence I found confirming I was sick. The more evidence I had, the more certain I became. The more certain I became, the more willing I was to undergo treatments. The more treatments I underwent, the sicker I believed myself to be.
It’s too easy to lay blame, but I do. I blame a book: the Diagnostic and Statistical Manual of Mental Disorders (DSM).
How can I blame pages, words, letters? Dots. Dashes. Lines. Marks on paper.
Because the DSM is powerful. Jeffrey Lieberman, former president of the American Psychiatric Association (APA), called it “the most influential book written in the past century.” Sociologist Allan Horwitz, author of DSM: A History of Psychiatry’s Bible, writes that it controls the diagnoses we receive and how we think about them.
Which might be fine if the DSM had scientific merit.
Which it doesn’t.
Some of the most prominent psychiatrists have referred to DSM diagnoses as constructs and placeholders. Others have admitted that they have no reality, pathologize normality, or are made up. As former National Institute of Mental Health director Thomas Insel put it, we “actually believe [diagnoses] are real. But there’s no reality.” Allen Frances, one-time chair of the DSM-IV task force, is quoted as saying that DSM diagnoses confuse “mental disorder with the everyday sadness, anxiety, grief, disappointments, and stress responses that are an inescapable part of the human condition.” Steve Hyman, another former NIMH director, called DSM diagnoses “fictive categories” and the DSM “an absolute scientific nightmare.”
But I didn’t know DSM diagnoses were invented and had no validity and little reliability until it was almost too late. Validity, which is considered the most fundamental principle in medicine, would mean that DSM diagnoses can be objectively measured, which they can’t. Reliability assumes that multiple clinicians presented with the same patient can rely on the symptoms listed in the DSM and will consistently agree on the patient’s diagnosis, which they can’t.
It’s tempting to fault the DSM’s authors, those members of the APA who wielded those words and punctuation marks. How else did so many unproven diagnoses end up on the most recent edition’s many, many, many pages? Over the editions, the number of diagnoses and spectrums and subtypes has grown. And grown. The DSM-5 clocks in at 947 pages with 541 diagnostic categories, compared to the scant 132 pages and 128 categories in the DSM-I. The DSM’s authors might defend themselves by saying they just want to make sure those who need care receive a diagnosis, even if (they leave this part out) DSM diagnoses are speculative at best.
It’s also tempting to reproach the psychiatrists and psychologists and social workers who level DSM diagnoses even though they know those diagnoses are unproven. They claim they have to label a patient with a diagnostic code to satisfy the insurance company and to get paid, even if (they leave this part out) it means letting a patient believe she suffers from a diagnosis that’s essentially theoretical.
And pharmaceutical companies who have benefited from the DSM’s revisions.
And the academic psychiatrists and researchers who have profited from and built their careers on pathologizing normal distress.
But the words—so convincing—do the most damage. They’ve taken on a life of their own. The DSM has become, as some say, a work of culture.14 It’s socially sanctioned. Many, many people believe it’s a scientifically proven medical manual; it’s not—not even close.
I could be the poster child for the dangers of the DSM. I lived through its most significant editions—the DSMs III, III-R, IV, IV-TR, 5, 5-TR—and received six of its many, many diagnoses. I call them misdiagnoses because all DSM diagnoses are misdiagnoses—i.e., incorrect, inaccurate, inadequate. They were created by loosening criteria, adding specifiers, shifting symptoms, broadening definitions, and lowering thresholds. How could I have so willingly accepted all those diagnoses and taken all those medications? Why did I believe the words that came from the DSM? I asked so few questions, lived with such little awareness.
How could I have strayed so far and been so naive?
Like so many who’ve been diagnosed, I wanted an explanation for what was happening to me—inside me—and no one had warned me about the DSM.
Pathological is everything I wish I’d known. It’s an attempt to help others understand the truth about the DSM diagnoses they or their loved ones might receive.