This week on the Mad in America podcast, we are joined by Sarah Fay. Sarah is an author, an adjunct professor at Northwestern University, a freelance writer at The New York Times and elsewhere, a certified mental health peer recovery support specialist, and a mental health keynote speaker who’s spoken to audiences across the country about recovery from mental illness.
We have previously spoken with Sarah about her book, Pathological: A True Story of Six Misdiagnoses, which told the story of her twenty-five years spent in the mental health system.
For her follow-up work, Cured: A Memoir, Sarah writes about her recovery from mental illness. She says, “During the twenty-five years I spent in the mental health system, not one clinician mentioned the word recovery. I ended up one of those “hopeless” cases—diagnosed with bipolar disorder, chronically suicidal, and unable to live independently. Yet I recovered. Not remission. Full recovery.”
In this interview, we discuss why “cured” is such a seldom-used word in psychiatry. We talk about the power of finding hope, the peer recovery movement, and much more.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
James Moore: Sarah, welcome. Thank you so much for joining me today for the Mad in America podcast.
Sarah Fay: Thank you so much for having me back. I am just so grateful to talk about mental health recovery.
Moore: We’re here today to talk about your latest book, entitled Cured: A Memoir, and it’s something of a sequel to your 2022 book, Pathological: A True Story of Six Misdiagnoses. Listeners might recall that you were on the podcast last year with Allan Horwitz and Robert Whitaker to talk about that book and psychiatry’s diagnostic manual, the DSM.
I have to say that it’s refreshing and powerful to read a celebration of mental health recovery and it struck me while reading how rare it is that we discuss recovery in mental health. So, to get us underway, could you tell us a little bit about what motivated you to write a book that follows on from Pathological?
Fay: The experience of publicizing my first book, Pathological, was so fascinating because it contains three strands. It’s my story of 25 years in the mental health system. I received six different diagnoses, ended up one of those “hopeless” cases, and was chronically suicidal. I could no longer live independently. So, that’s one strand of the book.
And then, another strand is taking the DSM to task, mainly because I used my diagnoses against myself and I saw them only negatively. But once I learned the flimsiness of the DSM diagnoses and that they aren’t scientifically valid and are rarely reliable, it changed things for me, and I was really angry. That’s the second strand.
Then the third strand is about punctuation. No one really understands that, but it’s my love of punctuation and the reason why I wrote that part was because I learned more and more about punctuation the longer I was in the mental health system. My way of holding on was teaching, reading, and writing.
Because I’d taken the DSM to task, my editor at Harper Collins, my publicist, and my agent even, we all thought we’re going to get so much push-back from psychiatry. We were just ready for it, and we got none. It was almost eerie and it was kind of more of a, “Yeah, we know, and we’re not going to talk about it.”
I felt like Pathological ended before my recovery. I had already been recovered for several years and I just felt like it didn’t tell that story and my story of recovery might be like other people’s. I had never heard of recovery. Not once did one clinician mentioned the word recovery to me in 25 years in the mental health system.
One of my diagnoses was anorexia and I was told that I would have it for the rest of my life. My parents were told I was going to die from it. Now, granted, this was in the 1980s. Then eventually, my diagnoses included generalized anxiety disorder and major depressive disorder. Then I was told I had ADHD and OCD and, after that, it was bipolar disorder. Once I received a bipolar diagnosis, I was told that I was going to die 10 years earlier than my life expectancy. I was told that I would cycle in and out of manic and depressive episodes and that I would likely die by suicide. Also that I would never hold a full-time job, it was unlikely I would have a long-term romantic relationship. It was just so dire that now looking back, there was no hope, absolutely none.
So then, I went to a psychiatrist who mentioned a patient of his who had recovered and once that word was mentioned, I thought, “You can recover from mental illness?” And not only did he say that, but he said she recovered and became an executive at Google. I have no interest in becoming an executive at Google but that just seemed to me, at the time, the pinnacle of mental health recovery.
Now, that’s not at all of what recovery is but I wrote the book to tell the whole story because Pathological ends where so many mental health memoirs end, with kind of an acceptance note, like a resignation note. I felt that there is this whole other part and I didn’t want anyone else not to hear the word recovery.
Moore: There is an excellent phrase you use in the book that stuck with me since. You say, “We’ve created a mutually causal situation. The psychiatric condition requires treatment that exacerbates it,” and I think that so well-defines the paradox that struggling people find themselves in.
Fay: And often we reduce it just to medication, and that’s an important point, but for me right now, what I feel is the lack of hope. It’s the absence of hope. It’s the absence of anyone talking about recovery and not just clinicians, because I know some clinicians do but the media too. We never hear about it. The New York Times has never reported on someone who has recovered. Then also publishers, why aren’t they publishing more memoirs like this? Because certainly, people have healed, although I didn’t know that at the time.
I also was very scared to tell my psychiatrist that I wanted to recover because I was scared he was going to say, “Wait, you are a hopeless case. No, not you. The Google executive can do it, but she has otherworldly Google powers,” or something. But I made so many mistakes—there is no right way to recover, but I certainly wanted to share my experience to help other people avoid the mistakes that I made.
So, the first part of the book covers the four “mistakes” that I made and the first one was believing that I had to be off medication. That is a tricky business and it’s a controversial topic, obviously. But for me, I had been on them for so long that my body had become dependent on them. The withdrawal was just too severe and I couldn’t do it, but I thought, wait, if you’re off medication, you’ve recovered. That made sense. You can’t take a psychotropic medication unless you have a mental illness, but the reality is, we have put people on these drugs long-term when they weren’t meant to be, and we have not talked about the dependency aspects of them enough.
The way I see it is, I am still on medication but I never adjusted. It’s just my baseline now. I’m very lucky, I have a low side-effect profile, so I can stay on them, but that was one mistake I made.
The second one was believing I shouldn’t be in therapy but only crazy, and I mean that word most lovingly. People go to therapy, which is hilarious and kind of says what’s wrong with our mental health system, that we actually only help people when they are in a state of distress instead of preventive care. That was one, but the other two beliefs are kind of interesting, which is that I thought I had to be in a romantic relationship for some reason. Again, the single woman often is demonized and ostracized. So, there is the myth of the crazy ex-girlfriend or the crazy girlfriend and she has to be broken up with and return to singledom where she belongs.
Because we don’t know what mental illness is, we don’t define mental health either. So, I was going down all these paths, trying to figure out “what is mental health?” It turns out you do not have to be in a romantic relationship. I am not in one and I am ridiculously happy.
The fourth one was that I had to be very, very social. So many diagnoses focus on whether or not you are ultra-social. I am a very solitary person. I love to be home reading and writing, maybe streaming here and there and with my cats. That’s a rocking Saturday night for me.
So much of recovery, which I didn’t know and I wish I’d known, is that recovery looks different for every person and it is a journey or an experience of deciding what kind of life you want given who you really are. That was so important for me to learn, but I do want to save people from those four mistakes if I can.
Moore: If it’s okay, I wanted to talk a little bit about diagnosis. Now, of course, diagnosis is a little bit like medication in that there are differing, sometimes polarized views about whether it’s helpful or not. Some people say are helped by having a diagnosis and it connects them to people with similar diagnoses, but many others say they feel limited or defined by it. I think you mentioned that your first diagnosis was anorexia in eighth grade, and then you went through many more as time went on. In the book, you say that each diagnosis became a self-fulfilling prophecy. So, I wondered if we could talk about that.
Fay: Definitely, and just to preface it, I always use the example of the autism community, because they’ve done something so important and miraculous, given our mental health system. They’ve embraced that diagnosis. They have championed each other with it, they have created the neurodiversity movement, which has said that it’s really the world’s job to not just accept but appreciate the way they see the world, hear the world, and interact with the world. That’s remarkable, and I feel like in many ways, diagnoses wouldn’t be a problem if there was an upside. You’re never told yes, you have major depressive disorder and…
I think that for me, what I did was because I received my first diagnosis so young, and things were difficult, my parents were divorcing, and I was going to a new high school. I was terrified and incredibly sad, and I had a terrible stomachache. I was not “not eating”, I couldn’t eat. I had a pediatrician diagnose me who basically looked at me, looked at the scale, heard that I wasn’t eating, and said, “She has anorexia,” even though I didn’t have three of the key characteristics, which are counting calories, weighing yourself obsessively, and believing you’re fat. I didn’t have any of those, but because I was so young I really started to equate emotions, primarily negative emotions, with diagnosis.
So, I never learned about the human experience. I feel anxiety every day. I am recovered and I have panic attacks, that is part of my human experience. Now, I was very ill and there is such a thing, in my mind, as mental illness. Again, that’s controversial as well, as a lot of people don’t believe you can recover because there is no such thing. There is no question that I was ill, but once I started to associate something doesn’t feel good, or even going into crisis with a diagnosis, that became my go-to, and it was always negative. Again, there was no positive aspect of it.
As you said, I think some people feel relief, they feel connected to people, but I did not have that experience.
Moore: You’ve got two books that are crammed full of references to many studies that show that diagnoses largely are tools for professionals rather than things that we should personally identify with. Looking back now, do you feel bitter about those experiences and about being labeled that way, or do you see it as part of the journey?
Fay: I was very angry at first and so I think that Pathological is a saucy book. The New York Times hailed it as a fiery manifesto of a memoir. Cured is a very different book. There is my story but I also tell the history of the recovery movement, which I had never heard, and I want other people to know that we have been recovering from mental illness for at least two centuries, if not longer. That needs to be out there and really talked about more.
Then within the book, I give people the tools that I use. Now, it’s not medical advice but the techniques and tools that I used that helped my recovery. I guess now, what I feel is there is no upside to me being angry at the mental health system at this point. The upside is me changing it. That’s the upside and I do feel like this is my purpose. Cured: The Memoir is being serialized and I’ll explain what that means. It’s available for free on Substack, so, basically online right now. We will eventually sell the book but now, I want to make sure as many people as possible get the information that’s in it and we can use that because it’s free.
We can use this as an opportunity to tell the media and publishers, and the mental health system, that recovery is important. So, my goal is to get 30,000 subscribers by November 2023. So, everyone listening, tell your friends. It’s free to subscribe at curedthememoir.com. Just put in your email address and you can read all available chapters of the book, and then I will also send you a new chapter every Saturday. You don’t have to worry about catching up because I’ve written it so that each chapter stands alone and you get everything you need. So, you never have to feel like you have to go catch up.
If we believed in recovery it would change everything. It would just be a domino effect, because if there is recovery, then the whole biomedical model comes into question. I was told you will have this for the rest of your life. This is because of this neurotransmitter or that synapse. It’s calling it all into question. If we turn to the recovery model, which by the way, the US government has been calling for us to do since 1999—I couldn’t believe that when I learned that. So, when the Surgeon General’s report on mental health came out, they were already asking us to move away from the biomedical model and toward a recovery model that says yes, people can recover from mental illness, even serious mental illness.
In one of the most recent chapters in Cured, I talk about how mental illness is often likened to heart disease and diabetes and that comes from a good place because it’s trying to say mental illness is serious, we have to take it seriously. The problem is, it’s also letting people believe that it’s lifelong. One of my readers said, “My father has diabetes and they just did a study, and someone recovered from Type I diabetes, which they said you cannot recover from.” So, even that’s starting to happen. Even the metaphors are breaking down.
Moore: I think it’s really brave and bold to have published this way and to allow people to read it for free. I did enjoy reading about the recovery movement. You write about the work of Judi Chamberlin and many others. You refer to some of the important studies that are powerful but are buried in obscure journals that are sometimes difficult to access, It’s amazing how people that were talking about recovery were almost seen as extremists, just for daring to suggest there might be a path through this.
Fay: I learned the term “clinician’s illusion” and it refers to psychiatrists and mental health professionals who say, “Recovery isn’t possible. My patients never recover.” The clinician’s illusion is basically a way of saying, yes, your patients never “recover” but you only see the sick patients. So, once we’re well, many of us tend to leave the mental health system. So, of course, they think no one recovers, and it’s simply not the case.
Moore: Continuing with the theme of the recovery movement, in the book you talk about your interest in peer recovery work. I believe that you are training as a peer support specialist. Is that right, and if so, could you tell us about what that entails?
Fay: I became a certified peer recovery support specialist and that was an incredible experience. After I recovered and even while I was writing Cured, the one thing I worried about is what if I relapse, what will happen? Is there such a thing as relapse? No one really knows. I did worry that I could get sick again and when I did the peer recovery certification, I knew I wouldn’t because that connection with other people and knowing that my purpose is to help others on their journey to recovery. It just changed it for me and I just knew, no, that will never happen.
Now, I shouldn’t say never. That doesn’t mean I will not experience periods of depression or anxiety. As I said, that’s part of the human experience, but that was an incredible journey, just because I was on it with other people who had also experienced recovery in such different ways. There were veterans who were doing the program through the VA, and there were people of different races and sexualities, genders, and everything. That was wonderful to see.
One of my facilitators, her name is Jean, is an amazing woman, but she had gone through foster care, had also struggled with addiction and had been homeless. I was just so in awe because I struggled to recover so much with all the advantages that I had and it was just so impressive to see all these people coming from so many different backgrounds and life situations, and making their way to recovery. It’s just amazing.
Moore: I have to say that one of the areas of interest, particularly here in the UK, but I’m sure also in the US as well, is the power dynamic that exists between a doctor and a patient. There is an assumed power there that they have some kind of hold or control over you and it strikes me that peer support deals with that issue because you’re talking to people at eye level. You’ve had sometimes similar experiences and the conversation isn’t just limited to half an hour in their swanky office with their drug-sponsored pens. It’s very much a human-to-human, ongoing interaction and that’s so powerful and important.
Fay: The most powerful part about it is that they don’t know what you’ve gone through but someone can say, “This is what happened to me.” The best thing I learned was peers never give advice, ever. That’s something very different from what we get from other people, but we don’t give advice. We just listen and when appropriate, if asked, we might share an experience that we had. There is so much respect for every person’s individual experience.
So, every person’s journey is going to be different and I think that mental health professionals try to do that and some are very successful at it, but often, I felt like I was just another patient. Here I am in the waiting room, I come in and I don’t look that different from the person who was just sitting here. “The seat is still warm” kind of a feel, and that’s just not the case with peers.
Then, there are so many offshoots to it that I didn’t know about in terms of the recovery movement and what they’ve given us in addition to peers. So, warm lines, where if you are feeling you do need to talk to someone, you can call a warm line and unlike 9-8-8 or 9-1-1 in the United States, which we don’t recommend anyone call anymore, for the most part, there is no risk that the police will be sent to your house unless you are clearly a danger to yourself or others.
So, things like warm lines, they gave us those and they gave us just anything that has to do with beyond managing symptoms. So basically, anything that leads us to start talking about recovery and that a diagnosis is not necessarily a life sentence.
Moore: The sense that I got from reading both books, Pathological and Cured, was how much healthier it would be for all of us if doctors were willing to say we just don’t know what the issue is here, but we can work together on a journey of discovery.
Your two books, to me anyway, were a journey of your discovery about yourself and the way you felt about things. Discovery about the evidence or lack of it behind many of the things you were told. Then the discovery that cured for you meant a whole different array of areas in your life. It wasn’t just medical, it wasn’t just social or psychological. It was many things. I love the way that you bring all those threads together across the two books.
Fay: Now that you said that, I was thinking, I wonder if I had just written Cured, that the book Pathological may never have happened. But you’re right, it’s really if we can just talk more about recovery.
One thing that comes up sometimes is people say it’s cruel to give “false hope.” I think it’s cruel not to let people know that recovery is possible. Now, it doesn’t mean that everyone will recover, but everyone must be given the chance and I was not. So, for that, all I want to do is rectify the situation and get this talked about on morning talk shows and the news, and really where it reaches people.
One thing I learned as an author is that if you want to reach people, television is the way to do it. The media is just harping on how we’re in a mental health crisis, there is nothing we can do. There is something we can do. We can talk to especially young people about recovery and the statistics are staggering. Fifty percent of adolescents never experience a second depressive episode again. That’s half of them, and how many of them are being told that?
Moore: Also, the fact that recovery means different things to different people, doesn’t it? So, you mentioned that you still have panic attacks. I do too. I consider myself recovered from my problems, but if I have a panic attack it’s because I’m in a stressful situation, it’s not because it’s a recurrence of an illness, or I don’t believe that for me, anyway. So, I think if we can encourage people to realize that recovery isn’t necessarily being symptom-free, but recovery might be thinking about your life differently and sometimes having some challenges, rather than being ill in some way and not able to cope.
Fay: I almost don’t like the word recover because it assumes you are going back to something. I think many people, what they do is they have a mental health experience and then they want to go back to the way they were. It’s impossible. We can’t time travel. You would be changed by that experience and one thing I had to learn was the difference between personal recovery and clinical recovery. We used to only have clinical recovery and that was when my psychiatrist tells me what recovery is, which means I have no more symptoms. That’s impossible, because anxiety, depression, and rumination, all of those are part of the human experience.
Someone could look at my life and say, “She is really isolated.” I get very panicky in crowds. I avoid stores at all costs. So, someone could say, “She has social anxiety disorder,” and again, I’m not minimizing when these conditions become acute. They are severe and can be disabling, I know what that’s like, I know what it is like to experience that.
At the same time, I think we’ve reached a point in our society where we’re very judgmental of ourselves and our lives. We want to be this Google executive ideal and really, I had to come to terms with a lot of the things that are unattractive in a woman in America right now. This is very much culturally based but what I’m supposed to look like and desire and want, versus what I do, and I don’t even really like going out to dinner. I prefer not to. Again, those are the things we’re fed, especially through commercials and advertising. These ideals I think can undermine a lot of people, especially those who have mental health conditions.
Moore: And the fact is that those preferences and dislikes for things have been around for thousands of years before some elderly white men got together in a room and decided to designate criteria for mental illness. So, if you think of it as just something I don’t like doing rather than being told because you don’t like it that’s a mental illness, there is a massive gulf between those two states of thinking about the world.
Fay: There is, and I think a really important part of this for me was learning about my mind and how the mind works. Again, I present all of this in the book as well, but evolutionary psychiatry became fascinating to me. Psychiatry looks for what’s wrong and how to fix it, and evolutionary psychiatry looks at what’s wrong and why there might be a reason for it. It was fascinating to me to consider for instance that often when I would get anxious and revved-up, which some saw as mania and sometimes it did tip over into that, I would then experience a depression. An evolutionary psychiatrist would say, “That’s your body returning to homeostasis. You’ve been up, so it has to come down.”
Even binge-eating, that is really how we’re designed. I mean, the brain is designed to keep us alive and that’s it. It does not care if we’re happy. It doesn’t care if we’re succeeding in our job but really, it’s just to perpetuate the species. So, it’s very mercenary, but the other thing I learned was that it’s always looking for what’s wrong. It’s always looking out for danger and it is essentially trying to find out what’s wrong and keep us alive.
So, what I used to see as a problem with my mind, because I was so negative or I was always worrying about everything, and I was always so anxious. It’s not a problem, that’s my brain doing its job. So, once I stopped seeing it as a problem and seeing it as a bad thing, that changed things and then, being able to process emotions—I don’t know if process is quite the right word—but to allow for uncomfortable emotions more than I ever did really helped too.
Moore: Was there anything that we haven’t covered about the book that you really would like to share?
Fay: Just that I interviewed a lot of people, I did a lot of research, and one thing that’s so amazing about being able to offer it for free online is that it’s interactive. So you can go through and read the chapters, but I also have resources for mental health recovery. So, warm lines and emergency numbers. I have little bits that I send out every Thursday about say, nutritional psychiatry. I also have interviews with mental health professionals. So, I have Larry Davidson who is with the Office of Recovery at SAMHSA and the program on recovery at Yale, and others.
The other thing I feature are stories of recovery from other people. I didn’t want this just to be my story. So, you can go on there and read about amazing people who come from different walks of life. The other thing that I just did was I recorded the audio of the whole thing. So, if you are a fan of audiobooks, all of the chapters have audio. Most of the interviews do, as well. So, you can find those on the website.
I hope everyone will visit and help me send that message to psychiatry, to all mental health professionals, and especially the media and publishers that we do want to learn more about mental health recovery. We want more research into it, not just the biomedical model, and I think what’s interesting too is that same facilitator that I mentioned in my certified peer recovery specialist training, Jean, said, “The biomedical model saved my life and the recovery model gave me back my life.”
I am not a psychiatrist, I am not a researcher. So, I don’t have the answers to that, but as a patient, as an ex-patient now, as someone who has recovered, all I know is that we need to give people a future because, for me, suicidality was all about not feeling I had a future. So, that’s the extreme that we get to and that’s what’s most important. So, please do subscribe, Cured is free to read and I hope that we can just change this mental health system.
Moore: Sarah, thank you so much for joining me today. I enjoyed reading Cured. It describes some intense and painful experiences that you endured, but it’s ultimately so hopeful for people to read that mental health recovery is not only possible. According to many people, it’s probable, actually.
Fay: One thing I do provide on there as well are statistics that should be readily available online that I had to dig through, but these statistics of recovery which are astonishing.
When I was 12, someone should have said to my parents, “There is a 62% recovery rate.” What if you went into a physical doctor’s office and you received a diagnosis, and then they just never talked about your healing, ever? Imagine that.
I hope every conversation about mental health includes the word recovery, every appointment, every physician’s visit that that word is mentioned and recovery rates are mentioned.
Moore: Sarah, thank you so much.
Fay: Thank you.
MIA Reports are supported, in part, by a grant from The Thomas Jobe Fund.