Shifting the Conversation around Mental Health: A Review of Sarah Fay’s Pathological: The True Story of Six Misdiagnoses
Anxiety. Depression. Who hasn’t felt either or both at one point in their lives? But when we toss those words around carelessly, identities form. We become the words instead of feeling them, and the difference between the emotions we call depression or anxiety and the disorders themselves all but disappears. “Pathologizing normal distress” is just one of the many criticisms Sarah Fay levels at our current mental health system, most specifically at the Diagnostic Statistical Manual (DSM), the psychiatric bible to which mental health and other health professionals turn for patient labels and codes. Fay’s compelling, journalistic memoir “Pathological: The True Story of Six Misdiagnoses” pulls back the curtain on current language and treatment practices. Her goal: to change the conversation around mental illness by shifting the focus from diagnosis to a deeper understanding of mental health.
Fay’s long history with psychiatric labels began in eighth grade, with anorexia. She certainly looked the part: young, female, white, upper-middle class, and very thin. At the time, Fay’s parents were divorcing. She was starting a new school. She’d had terrible stomach aches, a pit in her stomach that worsened whenever she ate. But the doctor never asked what was going on in Fay’s life or how she felt physically. Neither did he ask if she had any other of the classic symptoms: dieting, counting calories, a preoccupation around weight or body shape, feeling fat. Fay had none of those.
Five diagnoses followed—major depressive disorder, anxiety disorder, attention deficit hyperactivity disorder, obsessive compulsive disorder, and bipolar disorder—as did many troubling symptoms, which Fay honestly and unapologetically recounts. Fay’s documentation of her psychological struggles makes for the stuff of powerful memoir, but these details provide context for a greater level of consideration. Alongside each diagnosis Fay receives, she discusses the general history of that diagnosis as well as its relation to the DSM.
The DSM is an incredibly influential book, “which would be fine,” Fay insists, “if it had scientific merit.” DSM diagnoses, according to Fay, have little scientific reliability: “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.” And because DSM diagnoses cannot be measured objectively, Fay claims they are not scientifically valid either. Fay explains how psychiatric diagnoses differ greatly from medical diagnoses—and the problems that arise when the difference is not acknowledged:
Diseases like cancer and diabetes can be determined using an objective measure; DSM diagnoses were and are entirely subjective. They’re based on self-reported symptoms and a clinician’s opinion. I tend to be very thirsty, get hungry to the point of extreme irritability and dizziness… but I don’t have diabetes—a blood test would show that. I could never just be told I have diabetes, identify as a diabetic, and start taking insulin. But if I walk into a psychiatrist’s office and reveal that I’ve been known to worry, often can’t control the worry… I can be diagnosed with generalized anxiety disorder and no objective measure can say otherwise. I’d likely walk out of that psychiatrist’s office believing I have anxiety disorder, a mental illness, and may start psychotropic medication.
Fay backs up her scathing criticisms with meticulous research, which she presents in a clear and accessible manner. It is Fay’s great skill as a writer and researcher, combined with her compelling voice that, at times, caused this reader a bit of unease. As a trained psychotherapist with a master’s degree in social work, I am well aware of the huge problems with our mental health system, including our unquestioning reliance on the DSM. And whenever there is huge money to be made (as there is in pharmaceuticals), along with a power imbalance (as there is between psychiatrist and patient), the potential for abuse exists. Still, I worried that particularly vulnerable readers, who might benefit from therapy and/or psychotropic medications, would become discouraged from trying either or both to help them find much needed relief from their symptoms. The danger of “throwing out the baby with the bathwater” came to mind.
This is not Fay’s intention, however. She does not want to throw out the baby. Fay clearly and repeatedly states that mental illness is real, even while diagnoses are problematic. She remains on medication and has no present intention of getting off it. “I reject a diagnosis because none has been proven, but I have or had a mental illness—broadly and without definition… My body and mind demand a level of care that many don’t need… I don’t make these choices because I have a DSM diagnosis (or two or four or six) but to be well.” Fay’s goal is to educate patients and their loved ones so they can have greater agency as they seek their own wellness. To that end, Fay has founded Pathological: The Movement, a public awareness campaign.
In her book, Fay outlines a pathway for creating change, which includes making sure that individuals with DSM diagnoses know “those diagnoses are opinions, not facts.” She stresses the importance of discussing mental health without pathologizing thoughts and feelings, and, of course, demands “full-on DSM reform.” She also wants to see changes in how (and by whom) diagnoses are made. Primary care physicians (PCPs) often diagnose psychiatric disorders, but most do not have adequate preparation to do so: “A 2000 survey found that PCPs received a median of thirty-two hours of psychosocial training over the course of their residencies. That’s the equivalent, in terms of time, of bingeing on a few seasons of the medical TV drama Grey’s Anatomy.”
Several of Fay’s own diagnoses were made by PCPs. If she had come to her annual physical with heart symptoms, her PCP would most probably have referred her to a cardiologist, but, even with limited training in diagnosing psychiatric conditions, Fay’s PCPs handled the task on their own—along with the arrogance of certainty. It was not until much later in Fay’s mental health journey that one medical professional—a psychiatrist she refers to as Dr. R.—answered her diagnosis inquiry with the words “I don’t know.” It was those three words that led Fay to explore not what was wrong with her but with a system that had diagnosed her, repeatedly, but had not found a way to help her feel better. Eventually, Fay did feel better, but she chose never again to learn her diagnosis.
“This isn’t a classic mental-illness memoir,” Fay informs us in the prologue. “That kind of memoir is a quest story. From the beginning our hero is exceptional… of course she triumphs, ending up in the light, elixir in hand.” Pathological presents one quest, as well as one viewpoint of our mental health system today—an important one that calls for transparency and accountability. There are other viewpoints and experiences, however. People have healed through their relationships with skilled and compassionate therapists, and many believe their diagnosis (or diagnoses) have finally given them a framework through which they can understand the pain and challenges with which they’ve been struggling. Fay does acknowledge these alternate narratives, and to be fair, one can best speak to one’s own lived experience. Unfortunately, Fay’s lived experience may not be all that exceptional. While Fay calls her journey extreme, many readers will recognize parts of their own experience in hers. Fay does not end up with a magic elixir in hand, but she does triumph. She tells a compelling story coupled with both meticulous research and actionable recommendations. Fay is right: Her book is not a classic mental illness memoir; her experiences support the research she presents. As a many-faceted critique of a very flawed system, Pathological may become a classic in its own right.
Sarah Fay (Ph.D., MFA) (@sarahfayauthor) is a mental health advocate and the author of the journalistic memoir Pathological: The True Story of Six Misdiagnoses, which was an Apple Best Books pick and which The New York Times hailed as a “fiery manifesto of a memoir.” Sarah has shared her story on NPR’s 1A, Oprah Daily, Salon, WGN Morning News, NPR’s KERA/Think, The Rumpus, and in The Los Angeles Times. Pathological has been featured in Forbes, mindbodygreen, Thrive Global, Lit Hub, Psychology Today, and more. She writes for many publications, including The New York Times, The Atlantic, Time, and The Paris Review, where she was an advisory editor. She’s on the faculty at Northwestern University, is the founder of Pathological: The Movement, and is currently training as a Certified Mental Health Peer Recovery Specialist. For more, visit www.sarahfay.org.
Diane Gottlieb’s (@DianeGotAuthor) writing has appeared in Atlas and Alice, Bending Genres, Barrelhouse, 100-Word Story, The Rumpus, Brevity blog, and Hippocampus, among other literary journals, as well as in several anthologies. She is the winner of Tiferet’s 2021 Writing Contest in nonfiction and is Prose/CNF Editor of Emerge Literary Journal. You can find her at https://dianegottlieb.com and on Twitter @DianeGotAuthor.