Conversations Between Friends: Sadaf Ferdowsi and Sarah Fay
In the winter of 2014, Sadaf Ferdowsi took a creative nonfiction class taught by Dr. Sarah Fay. A longtime contributor at The Paris Review, Fay taught her the interview form while instilling a healthy suspicion on the limits of genre. Eight years later, they reconnected to discuss Fay’s debut book, Pathological: The True Story of Six Misdiagnoses.
Sadaf Ferdowsi: Something that struck me as I was reading your book was that I had been using the terms “mental illness” and “diagnosis” interchangeably, yet they’re actually two separate things. How are they different?
Sarah Fay: The reality is there is such a thing as mental illness. I had it and was very lucky to have my family support me so I could survive it. Diagnoses, however, are completely invented. This came as a total surprise because I had identified with all six of the diagnoses I had been given and had accepted them without question. What I hadn’t known was that they’d come from a book, the Diagnostic Statistical Manual (DSM), written by psychiatrists—primarily male psychiatrists—who determine which thoughts, behaviors, and emotions are “pathological” and should be diagnoses without needing any scientific validity to back them up.
Ferdowsi: Can you elaborate on that?
Fay: Our mental health system is set up in a way where, in many cases, you do need a diagnosis to be treated, so the DSM is well-intentioned because it’s trying to widen that net for care, but then there’s no way to prove [the diagnoses] as biological or chronic. There’s no blood test, brain scan, or gene that can confirm a DSM diagnosis in a repeatable and reliable way (exceptions are dementia and rare chromosomal disorders).
Ferdowsi: But the brain, the mind, varies from person to person. Is it fair to expect repeatability or reliability with something so subjective?
Fay: In some ways, there’s nothing wrong with the fact that DSM diagnoses are theoretical versus scientifically valid. What’s wrong is the disconnect between what they are and the power we give them, which was my experience.
Ferdowsi: Your book explores this disconnect on a personal level as you recount twenty-five years of misdiagnoses, but you also incorporate cultural, historical, and scientific research into the narrative which ultimately results in…investigative memoir? Autojournalism? Or what would you call it?
Fay: I refer to it as a “journalistic memoir” because the story unraveled like an investigation, like I was Woodward and Bernstein on this trail of diagnosis. But when it was time to market it, my editor didn’t want “memoir” in the title. She was like, “It’s too different.”
Ferdowsi: Another unique aspect of your book is this running ode to punctuation. Each chapter corresponds to and outlines the history and evolution of the fourteen punctuation marks in standard English. How does the punctuation thread relate to the personal and investigative threads of the story?
Fay: Punctuation is all about clarification, to make written language easier to read and understand. Which is what diagnosis is meant to be: it’s meant to clarify and distinguish between what is sadness and what is debilitating, dysfunctional depression—or, rather, the diagnosis of major depressive disorder. But the DSM doesn’t give us these answers because it can’t define “dysfunction,” or levels of dysfunction, which is part of the problem.
Ferdowsi: Your book cites neuroscientist Steven Hyman who, as a former director of the NIMH, likens DSM diagnoses to “fictive categories,” which reminded me of how you taught us genre. I can’t remember your exact words, but you said something like “genres are stupid and fake.”
Fay: Hah! I’ve only been iconoclastic, I guess.
Ferdowsi: It made me wonder if you think there are parallels between diagnosis and genre? Do we “diagnose” a text as memoir versus autobiography versus journalism based on “fictive categories”?
Fay: I’m not sure if the metaphor holds because I’m talking about living beyond diagnoses or at least not being so trapped in them. Whereas genre is very instructive within the system we work in as writers. If you don’t want to publish, go ahead and mess it up, but if you do, you’re always speaking back to the history of the genre and honoring those who came before you, especially for nonfiction, or poetry, or the novel.
So, if we were to extend the metaphor and do that with diagnoses, we would go back to Robert Burton’s Anatomy of Melancholy, the seminal text on depression, anxiety, and psychosis. In this tradition of mental illness, we’d understand why we can’t have these cut-and-dry, black-and-white things we give so much credence to—we’d have more nuanced views of them.
Ferdowsi: Is that why you included the thirty pages of endnotes, to speak back to the history of the “mental illness memoir” while adding nuance to the genre?
Fay: I knew no one would believe what I was saying about diagnosis. And why should they? I’m not a mental health expert, which is why I needed to have hardcore, PhD-level citations. I also knew I didn’t want to write a book that was for me only; I wanted other people to access it. I tell my students it’s not interesting to write about just yourself. You have to give the reader a gift and mine was weaving in the information about the DSM.
Ferdowsi: Knowing everything you know now, what would you change if you could go back in time to your twelve-year-old self and be the doctor who diagnosed you with anorexia?
Fay: It’s a little past the point, but the doctor didn’t consider the other factors going on in my life: my parents’ divorce, my fear of going to high school, my stomach hurting for weeks. None of that context was taken into account so the diagnosis was the focus. My dream is to flip that: context is the focus and diagnosis is just a small part of that. Another dream of mine is not being told your diagnosis, so you can’t create an identity around it. When my mom first took me to the doctor, I hadn’t been weighing myself obsessively, or cutting my food in weird pieces, or thinking I was fat. It was only after being told I was anorexic that I learned to become one.
What’s interesting is that up until the nineteenth and mid-twentieth centuries, diagnoses were used for doctors to communicate with each other. No one told you what you had so you couldn’t associate with it. I’m not a parent, but I do wonder if we need to tell a five-year-old they’ve been diagnosed with “pediatric bipolar disorder,” which was totally made up by Joseph Biederman for Johnson & Johnson.
Ferdowsi: Do you worry your critiques of Johnson & Johnson and other pharmaceutical companies like Pfizer, Lilly, and GSK could be misappropriated by antivaxxers or antimedication groups?
Fay: I think what’s different about me is that I’m in a situation a lot of people are in: I’m on medication. I don’t doubt how valuable it’s been, but I do want to be honest about how Pharma benefits from DSM diagnoses by funding the research that creates them and the psychiatrists who stake their careers on them. This is such a tangled, messed-up thing, but we tend to focus our criticism on Big Pharma, so I’d like to just stay here in diagnosis and reform the DSM. If we get this first step right, maybe medication wouldn’t be an issue.
Ferdowsi: What would this reform look like?
Fay: While it’s easy to pick out the flaws, it’s harder to offer solutions. And again, I’m not a mental health professional so I’m not fully qualified to say, but there have been some interesting ideas where we would go through the DSM and remove the racist, sexist, and transphobic diagnoses. For instance, Oppositional Defiant Disorder (ODD) is very similar to ADD, yet children of color are given this diagnosis more than their white counterparts. So, what if we just took it out? What would happen then?
The mental health system would totally change because children of color would then be treated for ADD, which is not as stigmatizing. Not even close. But I don’t think that’s going to happen. The DSM-5-TR came out in 2022 and it barely changed in nearly a decade, which means the change must come from us.
Ferdowsi: What would this change look like?
Fay: The more I’ve been doing publicity, the more this answer has changed. While it’s been an honor to receive so many emails and hear similar experiences from others, I’ve also realized how threatened I would have felt if someone had told me, “Your diagnoses are false,” because they were all I had to hold onto at the time. I couldn’t just let them go.
So, I think we start with asking our doctors and mental health clinicians, “Has my diagnosis been proven valid, reliable, or chronic?,” and then, “How does that impact the treatment you’re suggesting?” Just starting with a question is a good first step. It doesn’t mean diagnoses aren’t useful or you shouldn’t get care: we should absolutely get care, but we should also know the DSM won’t hold all the answers.
Ferdowsi: A few years ago, I’d emailed you for help on how to start writing. And you replied, “Do me a favor and notice (write down) how you work […] What does that look like? Pacing? Binging Netflix? Talking on the phone with a friend? What you do may be part of your process. Once you’re aware of that process, you can hone and embrace it.” That simple switch of understanding my writing as part of a wider routine, just something I did after sweeping the floor, was life-altering. What’s your process?
Fay: I’m like my cat and bribe myself with food. I wake up very early and, you know, putz around the house, get ready, clean the cat litter, whatever. And then I sit down to eat breakfast and write for an hour or an hour and a half. So, no matter what, it’s there. I like to have at least one time where I know for sure I’ll do it, and then anything extra like a writing block in the afternoon is just great. With Pathological, though, I was writing all day and all night. Well, not all night; I go to bed at nine.
Ferdowsi: Hah! While your advice was instrumental in increasing my writing output, I still struggle with actually finishing something. Any pointers there?
Fay: Well, I have to say I don’t understand people who don’t outline. And I don’t mean, like, “Roman Numeral I,” which sometimes I do, but I need to know what I’m writing when I wake up in the morning. I’m writing the sequel now, and it’s completely outlined and on my calendar. So, when I look at the date and it says, “Write three quarters of Chapter 1,” I know exactly what I’m doing. It’s that specific.
Ferdowsi: In your book, you mentioned you wrote “ethereal short stories no one read” in your twenties, two novels in your thirties and forties, and poems off and on. You outlined them all?
Fay: Not poems, though I should. But everything else, yes. I always did. What’s funny is a friend from my PhD program read the book and she was like, “I can see everything you’ve ever written in here”—the research from my dissertation, the pacing from the novels, the lyricism from the poems, which was so exciting to hear because most of them didn’t go anywhere. Especially with the novels, I’d thought, “I wasted that, what was that for,” so it was nice to see how all those skills eventually make it into the most important thing you write. It means everything counts.
Ferdowsi: I love that. Tell me about your sequel.
Fay: Pathological ended on an honest note that I don’t have the elixir or the answer, so this next book is a bit livelier and goes into the specifics of how I live my life after healing from mental illness. It’s been hard because there hasn’t been a memoir about that. The genre is either coming to terms with diagnoses or rejecting them completely, so this idea of making a full recovery is something I want to get into people’s hands.
Ferdowsi: For her Paris Review interview, you asked Marilynne Robinson how she approached revision and she frustratingly answered, “I really don’t do that.” Is revision integral to your craft?
Fay: Revision’s everything for me. I tend to be an in-process reviser wherein I’ll revise as I’m writing and then I’ll do one revision—or two, or three, or however many it takes—but now I’m learning that time between drafts is so important. I think you reach a point in writing where you can start to get away with things, but if you really want to achieve something, you need time between drafts, whether it’s a few weeks, a few months, or at least two days. I’m not good with that in the sense I always want it to be done, but I was forced to do that with my editor at HarperOne, which I loved.
Ferdowsi: There are many strong women in the arc of your story—from your mom and sister to female-identifying coteachers and doctors—as well as those behind-the-scenes with your editor and agent, whom you thank in the acknowledgements. This is a huge contrast to the many male-identifying psychiatrists and PCPs who treated/mistreated you. How do you think gender played a role?
Fay: I didn’t make the gender connection until that same friend pointed it out and felt duped because I’d been a Women’s Studies major and have always thought of myself as a feminist. I don’t want to blame all male doctors, but I do wonder if it was easier for my doctors—most of whom were men—to give me a diagnosis than it would have been for a man, especially when we consider the long history of women being seen as neurotic or hysterical.
What’s more, women use the mental healthcare system more than anybody else, so we’re most at risk for the complications and dangers of the DSM, which is why I think Dr. M was the most detrimental to me. As a bipolar specialist, he was determined to make me believe I was bipolar.
Ferdowsi: Ugh, I hated him the whole time he was in your book. I don’t trust people who drink lukewarm LaCroix.
Fay: I know. That should have been my first red flag.
SADAF FERDOWSI is a writer and Luminarts Cultural Fellow. Her essay “Albaloo” won a Best of the Net Award in 2022 and her other interviews can be found in Newcity Lit, Punctuate, and The Rumpus. Find her on Twitter @sadaf_ferdowsi, and on Facebook @sadaf.ferdowsi.
SARAH FAY (PhD, MFA) is an award-winning author and mental health advocate working to improve how we think and talk about our mental health. Her work has been featured on NPR’s “1A,” Salon, NPR’s “KERA | Think,” the Los Angeles Times, and more. Find her on Twitter and Instagram @sarahfayauthor, and on Facebook @mssarahfay.