How to Write a Medical Memoir About Your Own Health, with Sarah Fay

SARAH FAY KNOWS ABOUT how to write a medical memoir. Her new book, based on the six mental health misdiagnoses she received, got her to look hard at how we diagnose mental health and resulted in her new book. Listen in and read along as we talk about writing about your own health and so much more.

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Sarah Fay is an author and activist whose work appears in The New York Times, the Atlantic, Longreads and other places, including the Paris Review, where she’s an advisory editor. She’s the founder of Pathological: The Movement, a public awareness campaign devoted to making people aware of the unreliability and invalidity of diagnoses from the Diagnostic and Statistical Manual of Mental Disorders, commonly known as a DSM, and which is also referred to as “Psychiatry’s Bible,” the manual from which all mental health diagnoses are taken. She is the recipient of the Hopwood Award for literature, as well as grants and fellowships from YADDO, the Mellon Foundation and the MacDowell Colony among others. Her new book is called Pathological: The True Story of Six Misdiagnoses, just out from HarperOne. Welcome, Sarah.

Sarah: Thank you so much for having me. It’s great to be here, Marion.

Marion: Well, it’s wonderful to have you and this book is terrific and my audience is writers, many of whom are writing memoir. Many of those will be writing about their own medical experiences. So I’m going to set this up a bit for them so they understand the territory you cover. In the order in which they were delivered, you were in eighth grade when you were told that you had anorexia. The diagnoses that followed over the years include major depressive disorder, anxiety disorder, attention deficit disorder, obsessive compulsive disorder, and bipolar. Then as you move through these, you suddenly wanted to know the source of your latest diagnosis, that of bipolar. And you start to read the DSM, then research the DSM, in no small part because of the doctoral program you were in that taught you to use primary sources. And it’s as simple and as complicated as that. And this fact comes only late in your own string of diagnoses, but also late in the book. But I’d like to start there with that moment of aha or whatever it is you want to call it. When you start to question the DSM and begin your reporting, what were those feelings and sensations you had at that moment?

Sarah: Well, the one thing I remember, it happened I was in crisis at the time. So I was suicidal, and I had the bipolar I diagnosis and I went to see a new psychiatrist. And I went into his office and he was sort of a punchy, kind of buoyant guy. And I remember he looked at me and said, “Coffee, water?” And I thought, “Water? Like, that seems so difficult right now. I can’t handle water.” I couldn’t handle anything, but we did the quick 30 minute consultation and when it was done, I expected him and I waited for him to give me a new diagnosis or verify the bipolar I diagnosis. And he looked at me and he said, “I don’t know what you have,” and everything shifted. I mean, it was like the ground shifted from beneath me.

And I just remember walking out onto the street. I’m in Chicago and on Chicago Avenue, it was brutally cold. We were having a polar vortex. And so you talk about sensations. Everything looked clearer and crisper, but also harsher. It was like something had been taken from me, but a whole different world had opened up to me. And that’s when I started looking into where our mental health diagnoses come from and learning that they are not what I thought they were. And I thought they were as reliable and valid as any medical diagnosis. And it never dawned on me that maybe they aren’t and what they really are.

Marion: What a moment in a polar vortex and everything becomes clear.

Sarah: Yeah, right.

Marion: So did you, then at that moment, begin to think of this as a book? When did that then drop as an idea?

Sarah: Well, the book started as a collection of essays. So I wrote a piece on… No one knew about my diagnoses, first of all. And I very much hid… I mean, I was in the mental health system for 30 years. I managed to get an MFA. I managed to get a PhD and I say managed, I mean it. I was a writer in residence in the New York City public schools for six years. But all of that, I was really white-knuckling through all those diagnoses and not getting well and not finding the answers in those diagnoses either.

So I should say that some people do find relief in diagnoses and do find a lot of solace in them. And I don’t want to take that away from anybody. It just wasn’t my experience. I had a lot of self-stigma. I was very much afraid of being stigmatized. Those of you who are writers, who are listening, I was afraid anyone on the job market… I teach creative writing at Northwestern and I was very worried that if I went on the job market that that would work against me. And I had actually written an essay about suicidality for The Rumpus and it had gone up online and I went on the job market and spoke with my colleagues and they basically said, “Take your name off it and certainly don’t put it on your CV.” So, suicidality was not going to get me a job, certainly. This is all just to say that I was very much… I was not out about, for lack of a better word, about my diagnoses or my history.

So I wrote a piece, an essay for Longreads about solitude and isolation and loneliness. That’s what it’s called, in the spirit of Michel De Montaigne, the essayist on solitude, and I kept all of the mental health aspects out. And so when they took it, and that was just a wonderful editing experience, anyone who’s… Longreads is such an amazing platform and website that they’re just really furthering literary essays and thank you for that Longreads. But that was a wonderful experience and I thought I should just keep going. And one thing I brought into that essay was a discussion of punctuation. So I talk about brackets in that essay and I’ve just always been obsessed with punctuation. I think it’s the most amazing tool that a writer has. It’s like having two languages to work in. We’ve got words and then you’ve got punctuation to add to those words and I just get all excited about it.

So I decided, well, why don’t you keep going? Some some people get excited about sports. For me, it’s the colon. I don’t know. But so I thought, “Just keep going. Why don’t you just write a bunch of essays?” And there are 14 punctuation marks, so I thought write 14 essays. And somewhere along the way, I was also doing the research into the DSM and it just burst out of me. I wrote the book very quickly, even though there’s a ton of research in it, the research went on longer, but the narrative came out very fast. It was like I was just ready to tell it. Once I started writing it, I thought, “You have to go all the way there. If you’re going to tell everything, you might as well tell everything.”

So that was how it started, and yeah. So it started as essays and then became a memoir once one of two agents told me collections of essays don’t sell, as probably some of your listeners have heard. It was funny. I did a reading with Leslie Jamison, the brilliant Leslie Jamison of The Empathy Exams. And I told her that story. And I said, “Obviously they don’t know Leslie Jamison,” because she sold a lot of books and it was a collection of essays. But anyway, yeah.

Marion: Well, you referenced the punctuation and I think that your structure is perfect. I teach a lot of memoir and I like to talk about book structure. So let’s talk about that because this is no straight medical memoir that chronicles a women’s journey through the mental health system to some kind of resolution. It’s a hybrid the likes of which I think I’ve actually never seen and it depends utterly on your structure and you referenced it. It’s essays, it’s the punctuation marks, but using the history of punctuation, we travel through your story and the history of punctuation is not a secondary plot. It’s like the very energy source of the whole tale. It’s fascinating.

In the books opener, you remind us that Aristophanes of Byzantium embedded a series of dots into the Greek language, which previously had been written, I didn’t know this, without breaks. So we’ve got the comma K-O-M-M-A, the colon, K-O-L-O-N, and the periodis. And in your first chapter titled “The Weight of a Comma,” you get your first diagnosis of anorexia and you write that the comma was punctuating your life as an anorexic, separating items in the list in which you were falling apart. “Dry skin, brittle nails, difficulty concentrating, exhaustion.” And you say it coordinated adjectives that described me, the thin, depressed girl… And I just want everyone to buy this book and read it so they can witness the astonishing way you use the parenthesis to get us out of this book.

So let’s talk about this structure and how you came up with it. You told us a little bit about that, but you know, writers can really feel like, “Okay, I want to layer this over this, and I want to do it, and oh yeah, along the way, I want to blow up the whole idea of the DSM.” So, you know-

Sarah: Exactly.

Marion: We can feel it, that it’s right. But talk to me about pitching that to somebody. Talk to me about the first time you said to somebody, “I’m going to layer in the history of punctuation, and the history of my mental health experience, and I’m going to blow up the DSM along the way. What do you think?”

Sarah: Well, I don’t know how you work, but I’m different in that I do have an MFA, but I didn’t… It’s funny because I run workshops and I teach workshops now, but that whole idea of collective, having a lot of people read your work has never really been my way of doing things. I’m a very solitary person and I’m a solitary writer. So I wrote the entire book, no one looked at it. I didn’t talk to anyone about it. Not that I’m afraid of talking about it. I don’t have that jinx. I don’t believe in that. I was just thrust into it and I just wanted it… I had to finish it before I could talk about it was kind of the thing.

And I have a… My ex-boyfriend who’s actually in the book, Ray, he is a construction worker and he works all day. He’s the guy jack hammering. I mean, he’s just beat up at night and he can’t read anymore, but he listens to audio books all the time. So what I did was I would write a chapter and then I’d record myself reading it and I’d send it to him. And he was the best writing partner ever because all he would write is, “It’s great. Keep going.” That was all I wanted to hear.

Marion: Love him.

Sarah: I know. I tell my students that’s all you want from a writing partner-

Marion: That’s all you want.

Sarah: … is just, “You’re brilliant. Keep going.” That was it. So I wrote the whole thing. As I said, I had two agents interested, both tried to talk me into pulling the punctuation. I actually was thinking of doing it at first. And then I sent out to four other agents and they were all just big, heavy hitters. And I got just the best agent in Kim Witherspoon. And she basically… It was my dream at the time. I actually wrote a piece on this for poets and writers because… I’m 50 years old, so to have your first book at 50 years old… Just so everyone knows, it’s never too late. Just know that.

Marion: Lovely.

Sarah: But my dream since I was 20 was to have, even before I had a book, was to have an agent call me and say, “I’m part way through your book. Don’t talk to anyone else. I love it.” That Sunday I got an email and it was Kim Witherspoon, this amazing agent. And she said, “I’m two thirds of the way through your book. Don’t talk to anyone. Here’s my assistant, let’s make an appointment.” And I was like, “Oh my God, my dream has just come true.” So that was really great. And she asked for no revisions, which I’ve never heard of. She just said, “I think we’re ready to go.” She said, “It’s 96% of the way done.” She said, “I don’t need a hundred percent or something like that.”

And then when we sold it to Harper Collins, they didn’t ask for any revisions either, but that changed and I’m really glad it did. So the initial… You asked about how the three strands came together, DSM my story and punctuation. One, they loved the punctuation so that was great and very lucky, I now see. My editor, Sydney Rogers at HarperOne is just one of those editors. She wasn’t around very much and I thought, “What’s going on? Is she not going to weigh in? What’s happening?”

We had a call and she just sort of swooped in and told me three things to change and they were just what the book needed. And one was it wasn’t focused on the DSM. It was kind of taking down a lot of aspects of the mental health system. And she just came in and said, “I think you really need to focus on the DSM.” And it was absolutely right and it just was amazing. She was just one of those perfect editors. I’m so grateful to all of them.

So that’s how it came together. And I was just lucky that two really mainstream, and I mean that in the best way, really smart women who are very much in the game, who do a lot of best sellers thought, “Yeah, we can let this kind of strange artistic part of the book stand.” And I’m just so grateful to them for that.

Marion: Well, that’s fascinating, and I love that. And it’s the triple fantasy, right? It’s like, I just want someone to like my book. I want someone to call and say, “It’s perfect. Don’t call anybody.” But to say it’s 96% of… It’s there, and just…’ And then to get this great advice to focus in on the DSM. So any of us who’s ever been in therapy or even just been diagnosed with anything, knows that in the words, in the name of the condition, and this is such a language-based book, but you know, there’s that promise of help, that promise of community, that you’re not alone and other people have this. It promises that there’s something to be done in the knowledge-based mutual experience of this. And you write beautifully about how it’s a luxury to refuse a diagnosis. So you’re in no way, in any way, advocating that people should not seek help. So why don’t you put into your own words, what it is this book is advocating vis-avis, the DSM?

Sarah: So what it is, is… And I just also want to reiterate DSM diagnoses are very, very flawed and really any psychiatrist worth his, her, their salt will tell you that. I mean, this is not news to psychiatry. They’re very much aware of this. I was actually on NPR with Paul Applebaum, who’s chair of the DSM steering committee and Tom Insel, who was head of the National Institute for Mental Health. And they just backed up everything I said in pathological, which I couldn’t believe. It was such a monumental moment because in doing that, they were really saying to all patients, “Yes, you deserve to know everything that we know as psychiatrists.” And that was a beautiful, very hopeful moment for me. So even though this may sound all like criticism, I’m very hopeful for the future.

But yeah, mental illness is very, very real. I had one. I have fully recovered from it. I believe that mental illness can be recovered from fully and a lot of researchers and psychiatrists believe that as well. And I’m very grateful for that. We aren’t always told that, but no mental illness or DSM diagnosis has been proven to be chronic, and I hope people will find strength in that as well. So what I’m saying is what I found, I over-identified with my diagnosis. They became self-fulfilling prophecies for me. So everything in my life, my emotions, my thoughts, my behaviors, I attributed to whatever diagnosis I had at that time. And it really took me ending up in and out of partial hospitalization programs and intensive outpatient programs and becoming suicidal to really say, “Wait a second. How could I have gotten six different diagnoses and still not have gotten well? How could we still not have found the answer?”

And that’s what made me look into them. And what I’m really saying is that I want to save people the years I spent looking for the answers to my mental and emotional suffering in diagnoses because they can’t give us that answer. They just don’t have it. And it’s not psychiatry’s fault, really. I mean, as I said, I’m not anti-psychiatry at all, because I see a psychiatrist, I still get treatment, I’m still on medication. And I think that’s something that’s really different about pathological is often criticisms about psychiatry or the mental health system are people who’ve rejected it. And I don’t at all. I very much feel a part of it. And I feel very much a part of the community of people who’ve suffered from mental illness. I think we’re the strongest people on earth, even though we’re treated as weak. So I take a lot of pride in that and I don’t reject the system at all.

I want to help reform it and I want it to reach the people who are most in need who are not getting care, and to allow those who are not in crisis to really not over-identify with a diagnosis that might limit them in their lives. I basically was about to apply for disability. I had applied for it at my university. I thought I would die 10 years earlier. I thought that I would never have a long-term relationship. I thought that I would never hold a full-time job. I mean, I really was starting to limit myself all because I believed so strongly that I was my diagnosis and I want to save people from doing that. And that’s what pathological is.

Marion: Oh, good. Lovely and beautifully put. So let’s talk about the reporting of it. You were in eighth grade when you were diagnosed with anorexia and clearly we’re not carrying a notebook with us in eighth grade and so you were not recording this book then. So let’s talk about reconstructing something and in particular reconstructing such a highly charged experiences of that, but after all this other trauma of misdiagnosis. So you go back and you have a look. How did you do that? What kind of advice can you give to writers who were looking back at their eighth-grade selves and trying to… They’ll say to me, “Oh, I don’t remember. I don’t remember enough.” What have you got for people like that who are writing from that place as well?

Sarah: I would actually say to them, “Don’t panic. It’s a gift not to remember very much.” So actually, Leslie Jamison, when I was reading and in conversation with her, she asked how I selected from my past experiences. And there really wasn’t that much to select because I don’t have a great, full, rich memory. I’m not one of those people who remembers a lot of things. But what I remember, I remember crystal clear. So does that make sense? So basically you’ve got… What experiences I do remember are just so sharp and vivid, they could have happened 10 minutes ago. And so really, I just knew, okay, those are the experiences that go in the book and I didn’t judge them and I just put them in and I made them work in a way that a sculptor does because it wasn’t an effort, it wasn’t a problem.

It was more like, okay, how does this fit? I know it fits. So how do I work it into the narrative, because this is key or else, I wouldn’t remember? It was basically how I did it. And I know that some people are great journalers. And I mean, one thing about mental illnesses, I would have irrational moments and breaks from reality. And one thing I often did was throw things away. I would purge a lot. And so I really don’t have very many journals. I do from the most critical times, so from the last 10 years or so, but I didn’t have things from my twenties or really from my early thirties. I did not have that luxury. I do tell my students now keep a journal about everything, but I was never a journaler.

And again, I just looked at the moments that I remembered so clearly, and I knew those were the ones to tell. And then I researched those by talking to people or asking them. I also had the luxury, speaking of luxuries, that I spent a lot of those years alone. I was very isolated. I really did isolate myself partly because I just wasn’t coping very well. And so I wasn’t portraying people. That’s kind of another decision that the memoirs have to make. I have a very strict rule about putting people in my books. So I don’t ever tell their stories. I only tell mine and how they came into my story. So if my sister was struggling with X or Y, I never talk about that. It’s just how my sister entered my world. Then I can just ask the facts about when we were together.

And then the rest of it is just my… Again, what I remember clearly. What’s interesting is Clifford Beers who wrote one of the first memoirs about his experience being in institutions between 1900 and 1903… There were many, but he was one of the first mental health advocates. And he started the organization that became Mental Health America. But anyway, he says this really interesting thing, which is that mental illness sharpens your awareness so much, that it’s actually easier to remember moments of psychosis or depression or something like that along those lines. And we all have a different experience with it, but I thought that was so interesting.

Marion: That is fascinating and so hopeful, too. Rather beautiful, actually. So let’s talk about voice. This has a confident voice and that in itself, considering the history of your health and the obstacle of taking on the DSM is fairly astonishing. In one review, Anthony Swofford refers to your voice, in part, as “validly angry” and, you know, harnessing our anger or indignation is a great and powerful way to propel us to the desk as writers, but writing through it is another. That point of view, that voice, that anger, even valid anger, can sound know-it-all or harsh or preachy or otherwise superior. And you’re none of those. So did any of that ever creep into any of your drafts? Did you ever have to sort of say to yourself, “Hmm, I got to dial that down.”? Just talk to us about that voice. Writing from the position of knowing what you know can be very tricky.

Sarah: It is very tricky. I hadn’t talked about that with anyone. I’m glad you brought that up. It’s such an interesting part of all this, especially for people writing memoirs with societal sort of repercussions or that tap into social justice issues. It was really hard. And I think what worked so well and what saved the book in some ways was I hired a fact checker and she humbled me, let me tell you. So I have a PhD. I have a PhD, I spent six years in the stacks, meaning the library stacks, when we actually had to go see real books. And so I just sort of thought, “I’ve got this. I’m a researcher.” And I was.

I mean, there are over 500 citations all from peer-review journals and academic sources, but she really went in and constantly was saying, I think you’re overstating here. I’m not sure that this study says exactly that.” And it was really good. And then I had that lens for the rest of the book, which is, “Am I overstating this? Am I?” It was a great lesson and I highly recommend working with a fact checker. We don’t get them in publishing anymore. I’m with a major publishing house and I wasn’t offered one, but that’s common. I’m not at all criticizing HarperOne or Harper Collins. We don’t get them anymore. And I just think that’s such a shame, although I guess I would phrase it as a fact checker is worth every penny because you learn so much from them. So that’s really what saved it.

Marion: No one has ever offered that as a tip before in all the people I’ve interviewed. I love that. And I do remember my first book published a long time ago, there was a fact checker and she saved my ass many times. So I really, really, really, really like that. So I ask every memoir writer that I interview this question, so I’ve got to ask you, what are we asking a memoir writer to do when we ask her to go back and address or witness a trauma, a past trauma? Are we asking her to reanimate it? Are we asking her to go and relive it? Are we asking her to stand where she is now and have a cool, hard, detached look at it. What are we asking her to do?

Sarah: I learned a lot writing this book and I learned it from Mary Karr. Not that she told me, but from her books, her book on memoir writing, which was… I had never thought of it, and my editor did point this out, but that you have to occupy two spaces at once. So you have to be 12-year-old Sarah, and then also have the voice of Sarah today. The you then and the you now, and be working those together in and out, in and out, in this almost musical way. And once I got into that groove, I understood it’s not quite reliving it. I feel like it’s evoking what happened as if the reader is there.

It’s not that I don’t believe it can be, but I don’t partake in writing is healing. As I said, I’m not a journaler. I’ve always been a professional writer, like you sit down at this time and you’re at work. It’s all very disciplined and that’s works for me. So it wasn’t that I felt like I was healing myself. It was more that I was inviting the reader in and trying to get them in as much as I could. And then also part of that was having… Kind of acknowledging my… For me, as a white woman who grew up upper middle class was always acknowledging my privilege, as someone who can tell her story, as someone who got a book deal, as someone who, or even when I didn’t, when I was writing it, had the luxury to sit down and write. I didn’t have six kids and was living… So coming from that place of humility and just wanting to share with the reader like, “We’re here together. This is you and I and every reader.” So that was how I look at it.

Marion: That’s lovely. That’s very, very helpful. So as we start to wrap this up, I wonder if you could just consider any advice you might have for writers listening about the self care we need to apply when we’re working. As some people say, and you just touched on it, some people say, “Oh, memoir writing is so… It’s like therapy,” or, “It’s therapeutic and we learn about ourselves,” and all of this, but there’s a lot of self-care that needs to go into going back and looking at something. So any advice?

Sarah: Yeah, it’s gotten harder to read some sections of the book now. When I was in it, it was less so, and I didn’t really think of self-care then. What’s interesting is actually the chapter in which my cat dies usually gets me most upset, which I think people would find funny with all the tragedy that occurred to me. It’s like the cat dying makes me cry every time.

Marion: Yeah, sure. I got all teary when your cat died. I just wanted to tell you that.

Sarah: Yeah. I was distraught when she died. But I think the real thing is less about necessarily memoir writing and going back and being kind of… the care you need to take. It’s more about, I was not very careful with myself in terms of understanding how publishing works, and how the writing world works, and how to be really good to myself and understand how much rejection there is and how hard it is to write a book without knowing if anyone’s ever going to read it. I mean, I have some students who are like, “I don’t mind if no one ever reads it.” And I thought, “Wow, that would be great to think, but I’ve never thought that.” I wanted people to read my book. And so that’s a really hard place to be in, to live in for a long time. And so that’s where I wish I’d had a better sense for myself to really be just encouraging myself, like my writing partner, “Just…” I wish I’d been telling myself like, “It’s great. Just keep going. Just keep going. Just keep going.” And now that I’m on the other side of it, I see how much just… I mean, I had already lived through a lot of rejection, but it really is an amazing amount of rejection as being a writer. And it really is normal and it really is worth hanging in there.

Marion: Yeah. I’m thinking maybe you could start a side gig, Sarah, with daily affirmations for writers. “It’s great. Keep going.”

Sarah: You could just be delivered. The app. It would be the writer’s app.

Marion: “You’re doing the right thing. People will read this.” I mean, it’s easy. You could come up with 365 of them like right now. And I think you should get on that [inaudible 00:29:14].

Sarah: Easily.

Marion: Well, thank you, Sarah. The book is terrific and I just wish you all the best with it. The advocacy you put into this is wonderful and it was deeply inspiring to read. Go sell a million of them, please.

Sarah: Thank you so much. Thank you for having me on. You’re just wonderful to talk with. It was great.

Marion: Well, so are you. I hope our paths cross in person someday. That would be really fun to sit and talk. So the writer is Sarah Fay. Reach her at sarah fay dot org. The book is Pathological: The True Story of Six Misdiagnoses, just out from HarperOne. See more on her and this fine book at sarahfay.com. I’m Marion Roach Smith, and you’ve been listening to QWERTY. QWERTY is produced by Overit Studios in Albany, New York. Reach them at overit studios dot com. Our producer is Adam Clairmont. Our assistant is Lorna Bailey. Want more on the art and work of writing? Visit marion roach dot com, where I offer classes on how to write memoir. And thanks for listening. Don’t forget to follow QWERTY wherever you get your podcasts and listen to it wherever you go. And if you like what you hear, please leave us a review. It helps others to find their way to their writing lives.