The True Story of Six Misdiagnoses: The Rumpus Interview with Sarah Fay
Sarah Fay has a long history with labels. In eighth grade, she was given the diagnosis of anorexia by a primary care physician. Five additional diagnoses and many years later, Fay finally met with a psychiatrist who admitted uncertainty: He said, “I don’t know,” when she asked him what her diagnosis was. Those three words opened a window of inquiry. She began to question the validity of diagnoses, as well as their usefulness. Pathological: The True Story of Six Misdiagnoses (HarperOne, 2022) is Fay’s impassioned memoir of her symptoms, diagnoses, and exhaustive experiences with treatment, through which she most often found little relief. Pathological is also a meticulously researched history and fierce critique of the Diagnostic and Statistical Manual (DSM), often referred to as the psychiatric bible, the authority to which mental health and other health professionals turn for patient labels and codes.
Fay’s writing has also been published in The New York Times, The Atlantic, Time Magazine, and The Paris Review, where she served as an advisory editor. She’s currently on the faculty at DePaul University and Northwestern University. Fay has also founded Pathological: The Movement, a public awareness campaign devoted to giving patients agency in their mental health treatment.
Through Pathological and her advocacy work, Fay hopes to change the conversation around mental health. It was my great pleasure to be in conversation with Fay over Zoom to discuss her own experiences with misdiagnoses, the problems with the DSM and our current approach to mental illness, and ways to move away from a focus on diagnosis and towards a deeper understanding of mental health.
The Rumpus: You were misdiagnosed six times: anorexia, major depressive disorder, anxiety disorder, attention deficit hyperactivity disorder, obsessive compulsive disorder, and bipolar disorder. Where do we find these labels? What is the DSM, and why do you lay the blame at its feet?
Sarah Fay: The DSM is the Diagnostic and Statistical Manual of Mental Disorders. If your eyes glazed over, that’s fine. That’s how I used to feel. I’d never heard of it until I was on my sixth diagnosis, in my forties, and had started writing Pathological. Essentially, the DSM is the book from which all our mental health diagnoses come.
In physical medicine, a discovery’s made based on objective measures, like diabetes from a blood test. I assumed diagnoses like depression and bipolar disorder were found the same way. That’s not the case. The DSM is a manual that a group of primarily white, cisgender, heterosexual men put together based on their theories about what “disordered” and “normal” are. We are going off their hypotheses.
Robert Spitzer, the architect of the DSM-III, was asked why we needed five of nine symptoms to receive a depression diagnosis. He said it was consensus. They went around the room and asked everybody’s opinion. Four seemed like too few. Six seemed like too many. It was completely arbitrary. We still use that criterion for depression.
I chose the subtitle, The True Story of Six Misdiagnoses, because the definition of a misdiagnosis is inaccurate, incomplete, or incorrect. It’s not to say that every diagnosis out there is wrong, or someone couldn’t find help in it. It’s more that they’re going to be somehow inaccurate, incomplete, or incorrect. Because they’re contrived, made up.
Mental illness and DSM diagnoses are different. I want to make sure readers know that. In the book, I critique DSM diagnoses, but mental illness is very, very real, however questionable DSM diagnoses are. So why am I attacking a book? One, I’m a writer. For me, words on paper are powerful. The narrative right now is to attack psychiatry and pharma: They’re evil and that’s it. What I discovered and lay out for the reader is that it’s way more complicated than that.
Five of six of my diagnoses came from primary care physicians, who do much of the diagnosing and prescribing—seventy-nine percent of antidepressants and fifty percent of antipsychotics—to children. Some primary care physicians receive as little as eight weeks of psychiatric training during the first year of residency and eight weeks during the third year.
Rumpus: Nobody told you that this is not science until very late in the game. You had only one psychiatrist who said, “I don’t know what your diagnosis is yet.” It almost feels like a conspiracy of silence.
Fay: I started to question whether anyone knew what I had. “How could I get six different diagnoses and not be getting well?” I’m hearing from readers who say, This was my experience or my child’s experience. I’m not alone, certainly.
What’s been really interesting is that my editor, my publicist, and I were ready for pushback from psychiatry. I’ve gotten none.
The psychiatrists I’ve talked to are pretty much like, “We know. We don’t know what to do.” I hate to call it a conspiracy, but there is this huge gap of silence, a chasm between what psychiatry knows and what the media reports and what the public knows.
No mental illness has been proven to be chronic or to be biological, not even schizophrenia. The chemical imbalance theory was debunked two decades ago, but none of this is being clarified for the public, and it’s still what’s being taught in schools.
Rumpus: If it’s not a conspiracy, there’s certainly complicity.
Fay: And complacency. There were very few changes made in the DSM-5-TR, the newest revision, which says a lot about the complacency. They had a decade to try to do something and did nothing.
I think a lot will come out in 2024—if this is a conspiracy. The American Psychiatric Association embargoed all the notes and information on how the DSM-5 was put together and what the actual results of the field trials were. The embargo ends in 2024. We’ll be able to access that information, and hopefully, that will spur them to make a change.
Rumpus: You write that mental illness and diagnoses have become a cultural phenomenon. In the introduction to the book, you say, “This is not a classic mental illness memoir.” The fact that that there exists a “classic mental illness memoir” speaks to the place that mental illness and these labels hold in our culture.
Fay: Mine is not a classic mental illness memoir. While that’s a very juicy genre to read, it’s not reminiscent of what many people go through and certainly not my experience. Those books tend to rely on finding one diagnosis and either accepting or rejecting it. I discovered that diagnoses aren’t solid enough to do either. The classic mental illness memoir tells of an extreme situation. Mine became extreme but started out very ordinary.
Rumpus: There’s also the cultural phenomenon of false epidemics.
Fay: ADHD, bipolar II, and autism are the best examples of false epidemics. For all three of those, the diagnostic criteria were loosened, which made it much easier to receive the diagnosis.
Hyperactivity was the core of the ADHD diagnosis. Suddenly you didn’t have to have hyperactivity. You just had to be distractable and maybe irritable at times and not able to sit still sometimes or sit still too much.
What happens in false epidemics is that many more people get diagnosed. The media latches onto it and says, “Everyone has autism. Everyone has ADHD.” Right now “everyone has” social anxiety.
Rumpus: Tell us about your first diagnosis—anorexia. You were very young, very thin, weren’t eating. Still, anorexia as a diagnosis wasn’t an accurate assessment of your experience.
Fay: I fit the bill for anorexia: white, upper-middle-class girl. My pediatrician diagnosed me after about ten minutes. He never asked about the context or how I was feeling physically. I had terrible stomach aches. I didn’t want to eat because I had a pit in my stomach. My parents were divorcing. I was going to a new high school. I was terrified. And I was really sad. But that context never came up.
I also didn’t have the classic symptoms of anorexia. I wasn’t counting calories or weighing myself. I didn’t think I was fat at that time. But I found a novel called the Best Little Girl in the World by Steven Levenkron, and like so many eating disorder memoirs, it was basically a cheat sheet on how to become an anorexic.
One thing I’ve learned from my research is that many of what we call disorders go away in time. Maybe that would that have happened to me. But once I heard “anorexia” and identified with a diagnosis, it became very easy for me to see all my emotions, thoughts, and behaviors through a lens of diagnosis.
Rumpus: You write a lot about the difference between emotions and disorders. You can feel sad or feel depressed, but that doesn’t mean you have a depressive disorder.
Fay: That’s really important. I think the problem is we use the same words for depression the emotion and depression the disorder, anxiety the emotion and anxiety the disorder. We’ve psychiatrized language.
No longer identifying with diagnoses has forced me to stop attributing every emotion, thought, and behavior to a diagnosis. I don’t even know what my diagnosis is. It’s on my medical records, but I’ve asked my psychiatrist not to tell me. I’m receiving treatment. I take my medication and take care of my mental health. I live in my whole human experience instead of reducing everything to a diagnosis. Not everyone does that, but I certainly did.
In the nineteenth and twentieth centuries, patients never knew their diagnoses. Diagnoses were just for doctors to use to communicate with each other.
Rumpus: Let’s talk about craft. I see this as a braided book. There’s the personal, the memoir. There’s the meticulous research into the whole history of diagnoses and the DSM. Then there’s a thread about punctuation.
Fay: Pathological was originally going to be a book of essays. No one, except my family, knew I had a bipolar diagnosis or that I had been suicidal. When I decided to tell the whole story, it felt really huge. Maybe I needed a crutch to ease the intensity of the narrative and disappointment I was feeling in the DSM.
I think the punctuation was delightful, but it was also the story of when I was in tenth grade, at the time I had received my first diagnosis. My idol of an English teacher told me I used commas like I was decorating a Christmas tree, which I did. I almost failed my term paper. There’s a simultaneous path of receiving diagnoses and learning about punctuation. I decided to bring that to the reader too.
Rumpus: Can you talk about the role privilege plays?
Fay: One thing we know is that to recover from mental illness, you need what they call the three Ps: place, people, and purpose. I’m so privileged on many levels. My mother took me in for five years when I couldn’t live independently. If she hadn’t, I might have ended up on the street. So, I had place and people. Then I had purpose—teaching and writing.
But I’m also white. I look a certain way. I was raised upper middle class. I get away with a lot, let’s put it that way, that a lot of other people do not.
In the book, I talk about having the privilege to not take on a diagnosis or a diagnostic label. I don’t have to use it to apply for disability on a regular basis or to receive educational services. I’m not in the legal system where I might need it as well. If that were the case, I would inevitably be identifying with diagnoses more than I have to right now.
Rumpus: What gave you the courage to write the book, and why now?
Fay: The courage comes from everything I discovered about mental health diagnoses and knowing that so many people were going through the same thing without the information they needed. As someone with a PhD, I know I can research and convey research very well. I felt like I had to get this to people.
Rumpus: Can you tell us about the Pathological: The Movement?
Fay: When we had finished edits on the book and production was on its way, I realized I hadn’t given anyone action steps. So, I started Pathological: The Movement. It’s a website and a reference guide. It lists all the books I used, not all the scientific studies, but the books that will reshape how you think about mental illness.
We also offer three questions to ask your doctor if you receive a diagnosis. The first question: Is this situational? Could this be explained by circumstances I’m going through instead of labeling it a disorder? The second question: Is this episodic, meaning, is it chronic or could it possibly go away?
The third looks at treatment: Is there an exit strategy? What is our strategy for when I start to feel better? I say “when” because if we don’t let people heal, if we don’t tell them they can, and give them a plan for if or when they do, no one’s going to get better. The brain is powerful. We’re basically denying people with diagnoses the most powerful tool we have as human beings by not letting them let their brains do some of the magic of yes, we can heal.
Rumpus: What’s next for you?
Fay: I’m writing the sequel to Pathological right now. People kept asking me how I got better. How I got well. So I’m telling them.
We like to make metaphors about what mental illness is. “Depression is like diabetes,” for example. But it’s not. One metaphor that I love and find very helpful comes from Thomas Insel. He says mental illness is like breaking a bone and that you do heal.
I take his metaphor a bit further. Not all of us are going to heal well. Some people are going to have chronic pain and take medications for the rest of their lives. Some may have a limp. I feel like I broke every bone in my body. So yes, I’ve healed, but I’m not going to do the equivalent of skiing or skydiving in my mental life. I have to live a certain way.
I’m on a cocktail of drugs, and I don’t know if they’re helping me or if my body is dependent on them. I’m not willing to risk it. I don’t think being on medication makes me a lesser person. There’s a trend toward pill shaming right now that doesn’t help.
It would be absurd for me to think, “I’m going to go back to normal,” whatever that idea is of how we should be living as Americans. That’s not on the table for me. And I don’t think it’s on the table for a lot of people. That’s okay. I love my life now.
Author photo by Maia Rosenfeld