Why Sarah Fay Pushed Back Against Doctors' Labels

2022-05-20 20:33:26 By : Mr. licon lv

Our editors handpick the products that we feature. We may earn commission from the links on this page.

After decades of defining herself by conditions she was diagnosed with, Sarah Fay, author of “Pathological,” decided she needed a new POV.

My first diagnosis came at age 12. I hadn’t been eating much for months, then nothing for four days, then I couldn’t hold down food or water. In the car on the way to the hospital, my mother gripped the steering wheel and cried, “What do you think you’re doing?” Her voice was tight with panic. I didn’t have an answer for her then or in the cold examination room as I stepped on the scale and the doctor flicked the weight lower and lower until it balanced. The cheery expression he’d greeted us with faded.

“Anorexia nervosa,” he said, his tone authoritative.

As a girl—not yet a teenager—I didn’t think to question him, a man wearing a lab coat with a stethoscope hanging around his neck. Until that moment, I’d never even heard the word anorexia. (It was the 1980s—long before thinspo websites and pro-ana Instagram accounts idealized and encouraged the disorder.) A therapist later told me the classic symptoms, none of which I’d exhibited: I never weighed myself, counted calories, or thought of myself as fat.

It’s not that something wasn’t wrong; it was. What I was doing was extreme, even dangerous. But it seemed logical to me. My parents were divorcing, and I was about to attend a new school. I was extraordinarily sad and terrified. That sadness and terror gave me a stomachache, and because of that stomachache—which seemed to encompass me—I didn’t want to eat. It may have been an attempt at control, an oft-cited reason for anorexia, but I wasn’t conscious of doing so if it was.

For the next 30 years, I battled many of the emotions, thoughts, and behaviors that characterize the human experience: depression, anxiety, agitation, psychic discomfort, obsessiveness, insomnia, overindulgence, fear, distractibility, despair, and more. I also experienced some that aren’t as common: social isolation, self-hatred, depersonalization, derealization, hyperactivity, and suicidality.

My struggles were severe. Most often, my diagnoses came from primary care physicians during annual visits. (I didn’t see a psychiatrist until I was in my 40s.) At various times, I was told that I had generalized anxiety disorder (GAD), major depressive disorder (MDD), obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), and bipolar disorder—sometimes in combination, sometimes individually.

A diagnosis can bring relief and even feel like a lifeline. But for me, it wasn’t that straightforward. Once I was given a diagnosis, it became the focus. It was the reason for my distressing thoughts, overwhelming emotions, and undesirable behaviors. All other aspects of my life were secondary.

If a mental disorder was me and the reason for my thoughts, feelings, and behaviors, it must hold the key to my mental health. But none did.

In some ways, each diagnosis was a self-fulfilling prophecy. I identified so strongly with it that I came to embody it. (It didn’t help that I was told I was anorexic and bipolar, not that I had them.) With the depression diagnosis, I saw myself as a depressed person. The anxiety diagnosis made me even more anxious. With the ADHD diagnosis came the belief that I was simply someone who was easily distracted and had trouble paying attention. The OCD diagnosis made me pay greater attention to my obsessions, which intensified my compulsive behaviors. As someone with bipolar disorder, I believed my surges of energy and periods of inertia were manic highs and depressive lows.

Thinking of myself as a diagnosis encouraged me to deem myself incapable and set limits on what I could accomplish. Although I received an MFA and a PhD, eventually taught writing at various universities, published in reputable magazines and newspapers, and eventually wrote a book on the subject, I often couldn’t function. (Academia is one of the most accommodating work environments.) In my 40s, I could no longer live independently. I was one of the lucky ones in that my mother let me live with her.

I sat in my new psychiatrist’s office. It was January. Chicago was experiencing a polar vortex. Although Dr. R’s office was warm, I still felt cold to the bone. On the glass desk sat only a laptop. The bookshelf held only a couple dozen books and a few ornamental sculptures. Sleek. Efficient.

Dr. R wore black pants and a crisp white collared shirt. He was energetic, verging on buoyant. Animatedly, he pointed in my direction. “Water?”

I felt like I was cracking and falling into a deep hole, and water seemed like a tremendous effort. I wanted help—a solution, fast. “No, thank you.”

Twenty-seven minutes—the length of the appointment—wasn’t enough time to describe exactly how my mind seemed to be splintering, so I mainly gave him my mental health history, a laundry list of my diagnoses.

When our session ended, I waited for him to proclaim my new diagnosis or validate my current one (bipolar disorder) as if from on high. He didn’t; he just sat there as if deep in thought. Finally, I asked him what he thought I had. He glanced at the ceiling and then back at me and shrugged. “I don’t know what you have.”

I don’t know? No clinician had ever said those words to me. They’d doled out their assessments quickly and with aplomb. Most had come during a 15-minute annual visit.

Dr. R and I decided on the time of my next appointment, and I walked out into the bitter cold.

I don’t know? How could he not know?

Icy snow lined the sidewalk. Cars and taxis honked their horns. The world seemed harsher but also clearer. Crisp.

By the time I reached the corner and waited for the walk sign to cross Michigan Avenue, my mind started to spin—in a healthful, inquisitive way: Where did mental health diagnoses come from? What were they? Who discovered them?

I went home to my tiny apartment that looked out onto a brick wall, determined to learn everything about mental health diagnoses.

And research I did. In the blue light of my computer screen, I dove into Google Scholar, reading meta-analyses of scientific studies. I devoured book after book written by psychiatrists, researchers, sociologists, and medical historians.

What I discovered came as a shock. The mental health diagnoses we receive aren’t born of scientific discoveries; they’re theories written in a book: the Diagnostic and Statistical Manual of Mental Disorders (DSM), often referred to as “psychiatry’s bible.” The DSM is based on the opinions of its authors, who have historically been white men, typically members of the American Psychiatric Association (APA), not science. I’d spent 30 years in the mental health system and had never heard of the DSM. I wondered if any of the 46 percent of American adults and 20 percent of American children and adolescents who will receive at least one DSM diagnosis in their lifetimes had either.

What I discovered next was practically destabilizing. Unlike most diagnoses in medicine, mental health diagnoses aren’t 100 percent valid. Validity, the most fundamental principle in medicine, would mean that DSM diagnoses could be precisely measured and determined; they can’t. No biological markers distinguish between what’s “normal” and what’s “pathological.” No objective measure—no blood test, X-ray, or biopsy—can show a person has the diagnosis given. (Exceptions to the above are dementia and rare chromosomal disorders.) Diagnoses are based entirely on a patient’s self-reported symptoms and a clinician’s opinion.

DSM diagnoses also have little reliability. Reliability means that multiple clinicians presented with the same patient can rely on the symptoms listed in the DSM and agree on the patient’s diagnosis. With mental health diagnoses, that’s not the case. Based on the clinical picture, doctors are just giving us their best guess.

It took me a moment to realize that none of this meant that mental illness isn’t real, just that the diagnoses we receive shouldn’t be taken as the gospel truth—particularly in milder cases where the level of dysfunction is difficult to gauge. The DSM can’t define dysfunction, so anyone can receive a diagnosis.

As a woman, I had other reasons to be skeptical. Women are the largest consumers of mental health care. (The fifth edition of the DSM defines sex differences as “variations attributable to an individual’s reproductive organs and XX or XY chromosomal complement” and gender differences as “variations that result from biological sex as well as an individual’s self-representation that includes the psychological, behavioral, and social consequences of one’s perceived gender.”) We’re more likely to be prescribed antidepressants, treated with electroconvulsive therapy, and hospitalized. We’re more than twice as likely as men to receive mental health services, i.e., a DSM diagnosis. This statistic implies that women have more mental disorders, but it only demonstrates that women receive more DSM diagnoses. We tend to be diagnosed with depression, anxiety, and post-traumatic stress disorder—diagnoses that are often stigmatized as signs of someone who’s “neurotic.”

I stared at the brick wall outside my window. As someone who was a women’s studies major in college and who identifies as a feminist, I should have been onto this. Feminist groups have been protesting gender bias in the DSM since the 1980s. For example, the proposed diagnosis of masochistic personality disorder (renamed self-defeating personality disorder) seemed to justify violence against women by implying that some women enjoy being abused. Borderline personality disorder (BPD) and other stigmatizing disorders often stereotype women as “mad,” “difficult,” “hysterical,” and “crazy.”

My doctors had all been men, except one. Was their gender why I didn’t question them or press them for more information? Or was it that as Americans, we tend not to question physicians because “they know best”?

In terms of the latter, I simply hadn’t a clue about the limitations of mental health diagnoses. Now that I did, my life changed. My mental health was something I finally had agency over—not just as someone who’d spent the majority of her life in the mental health system, but as a woman.

I still see Dr. R and take my medication as directed. It took a year, but eventually, I revealed to him all I’d learned about the DSM. My hesitation to discuss it with him came partly from gender conditioning and because I worried he wouldn’t want to be my psychiatrist anymore. He was the only clinician who’d been honest with me.

When I explained that I was writing a memoir that was partly an investigation into the DSM, he threw up his hands.

“The DSM,” he said with dismay. “It’s a mess.”

We’ve since talked about the DSM at length. He’s been transparent about its flaws and controversies but believes that psychiatry is the finest of professions.

At my most recent appointment, he asked how I was doing. I characterized parts of my life as great and said I was feeling strong—words I didn’t think I’d ever use to describe myself.

When mental health diagnoses first became standardized in the mid-19th and first half of the 20th centuries, they were meant only for doctors. They served as a kind of shorthand for clinicians to communicate with each other about patients. Patients rarely knew what they were diagnosed with. Diagnoses were never intended for us to use as a lens to understand ourselves, others, and the world. There’s so much more to us—as women—than that.

Sarah Fay is the author of Pathological: The True Story of Six Misdiagnoses. She writes for many publications, including The New York Times, The Atlantic, Time, and The Paris Review, where she was an advisory editor. She is the recipient of the Hopwood Award for Literature and grants and fellowships from Yaddo, the Mellon Foundation, and the MacDowell Colony, among others. Fay is on the faculty at Northwestern University and is the founder of Pathological: The Movement.

The Greatest Ever Romance Novels

26 of the Greatest Book Subscription Boxes

Emily St. John Mandel’s “Sea of Tranquility”

“I Never Promised You a Rose Garden” Foreword

Five Books Pivotal to Viola Davis’s Journey

Amanda Gorman Foreword to “I Have a Dream”

Oprah and OBC Author Viola Davis in Conversation

Danyel Smith’s “Shine Bright” Is an Ode to Music

Salamishah Tillet on Alice Walker’s Journals

BookTok and the Rediscovery of Books

The 2022 Pulitzer Prize Book Winners

Chloé Cooper Jones’s “Easy Beauty”

Our editors handpick the products that we feature. We may earn commission from the links on this page.

©Oprah Daily LLC. All rights reserved.