Why We Need to Rethink Mental Illness with Sarah Fay

Episode Transcript:

00:00:00 – Sarah Fay
There’s a part of mental health diagnoses that is really no different than horoscopes, right? They’re just introvert, extrovert, personality tests, same kind of thing. That’s how they’re being embraced today, right now. But the stakes are so high with psychiatric diagnoses.

00:00:22 – Chris Forbes
Welcome to the one you feed. Throughout time, great thinkers have recognized the importance of the thoughts. We have quotes like garbage in, garbage out, or you are what you think ring true. And yet, for many of us, our thoughts don’t strengthen or empower us. We tend toward negativity, self pity, jealousy, or fear. We see what we don’t have instead of what we do. We think things that hold us back and dampen our spirit. But it’s not just about thinking. Our actions matter. It takes conscious, consistent, and creative effort to make a life worth living. This podcast is about how other people keep themselves moving in the right direction. Direction how they feed their good. Wolf, thanks for joining us. Back on the show is Sarah Fay, an award winning author, educator, activist, and entrepreneur. Her work focuses on mental health advocacy and questioning society’s happiness formula and how to create your own. Her debut memoir was the true story of six misdiagnoses. Today, Sarah and Eric discussed the highly anticipated sequel called cured, which is a best selling featured publication on Substack.

00:01:47 – Eric Zimmer
Hi, Sarah. Welcome to the show.

00:01:48 – Sarah Fay
Thank you so much. I’m so happy to be here again. I feel very honored to be a double guest. It’s wonderful.

00:01:55 – Eric Zimmer
Yeah, I’m really happy to get to talk to you again. I think our first conversation was really about two years ago, around that timeframe, and it was around your book that was called pathological, and it was about the six diagnoses you had been given, you know, psychiatrically and where that is. And what we’re going to talk about today, mainly, is a new book you’ve written, although it’s not quite in a book form at the moment, but it’s been serialized on Substack, which is called cured. But before we get into any of that, we’ll start, like we always do, with a parable. In the parable, there’s a grandparent who’s talking with her grandchild, and they say in life there are two wolves inside of us that are always at battle. One is a good wolf, which represents things like kindness and bravery and love, and the other is a bad wolf, which represents things like greed and hatred and fear, and the grandchild stops. They think about it for a second, they look up at their grandparent and they say, well, which one wins? And the grandparent says, the one you feed. So I’d like to start off by asking you what that parable means to you in your life and in the work that you do.

00:03:02 – Sarah Fay
I love this parable, and I’ve been thinking so much about it for the last couple of days because it was a spoiler. I already knew you were going to ask me, and so. But really, I never could have predicted when we talked the last time, because we talked right before pathological came out, I never could have predicted what was going to happen with psychiatric diagnoses in the last two years. And so what I mean by that is, to me, the good wolf is when diagnoses are used by trained professionals to get people in emotional and mental distress help. And the bad wolf is when diagnoses are used by the public who don’t have that training, often by teenagers and even children diagnosing themselves on social media like they’re doing right now. And social media influencers with no training spreading misinformation. So you’ve got, you know, the good wolf is kind of diagnoses being used in the right way, even though they’re flawed. And then the bad wolf is diagnoses being used by the public who really don’t know enough about them. And I wrote pathological to prevent that. But now what we’ve seen is that we’ve been feeding the bad wolf, and that has really created a new kind of crisis. Instead of feeding the good wolf, which it was meant to do, right, mental health awareness was meant to do that. And instead, basically, you’ve got people who really don’t understand the diagnoses, which is why I wrote pathological about the DSM, to educate people, especially parents. And just over the last two years, I’ve seen how young people on TikTok and Instagram are really diagnosing themselves. There’s this idea that you can be undiagnosed, autistic or borderline personality disorder or whatever it is, and then the statistics of how damaging that can be. And it really has saddened me in some ways. But I wrote cured, hopefully, as a remedy to that or an alternative to that.

00:05:00 – Eric Zimmer
It is sort of fascinating. I’m not really on social media, so I’m talking secondhand here, broadly. But you quote a study that found that 83% of the mental health advice on TikTok is misleading. And we’re not talking about, like, a few people are seeing this. It is huge on TikTok. I can’t remember the impression numbers I was seeing, but they were huge numbers.

00:05:22 – Sarah Fay
24 million people.

00:05:24 – Eric Zimmer
Yeah, yeah, yeah. I mean, that’s a lot of people. And so diagnosing ourselves is a risky sort of thing. And I think the other thing that’s just fascinating to me is that people seem to almost want these diagnoses. And I understand that on some level, because if you’re suffering for me at least, and I think I’ve heard enough people report this initially, some sort of diagnosis feels good. Like, if I’ve got some unknown pain and I don’t know what’s going on, and I go to the doctor and they’re like, oh, you’ve got a strained right quadricep. I’m like, oh, great, okay, we know what this is, and ideally we’re going to be able to do something about it. So these diagnoses, I get why they can be helpful, but it’s so strange for them to be almost a status symbol in some ways. And I agree with you that I think our desire to make mental health awareness go up is backfiring in some ways.

00:06:19 – Sarah Fay
It really has, and in the scariest, scariest way. And this was true of me in pathological. I really show my trajectory from being someone who. I got six different diagnoses. I took each one on as a label and they became self fulfilling prophecies. And I should say mental illness is very real. I had a severe mental illness for 25 years. I know what it’s like. There was something wrong. So I’m not doubting that these young people or whoever aren’t in mental and emotional pain and some of them may have serious mental illness. So I’m not at all saying that. It’s just that when you don’t understand, and this was true for me, that DSM diagnoses, they’re subjective, they have racial and gender biases, they’re scientifically invalid. There’s no test we can use to prove them they’re unreliable. So two mental health professionals can see the same person at the same time and give them two different diagnoses, and then there’s all this influence with big pharma in their creation. So what the DSM is, it’d be very different if the public was educated on that and parents knew and everyone knew and was very aware and we had all the information. Christina. Karen at the New York Times did a wonderful piece about how people are now going into therapist’s office and psychiatrist’s office and demanding diagnoses, like saying, I know I have this. And so really almost putting the professional out of the equation in many ways. So there’s nothing wrong with even identifying and labeling yourself if it brings you some relief. But in some ways, there’s a part of mental health diagnoses that is really no different than horoscopes. Right. They’re just introvert, extrovert, personality tests, same kind of thing. That’s how they’re being embraced today right now. But the stakes are so high with psychiatric diagnoses.

00:08:03 – Eric Zimmer
Right.

00:08:04 – Sarah Fay
You know, they can be, you know, in terms of looking at it as a medical disease, as something that I need a medication for, or I’m gonna limit my life by. And medications can be so helpful and so not helpful. So. And I’m not laughing at that, but in many ways, they were a godsend for me, and they have been very, very unhelpful, both for me and others. So that’s not to discount medication. But again, that study was unbelievable. So 83% of people on social media giving advice, particularly TikTok, in this study, 91% had no mental health training. 14% of the videos were potentially damaging content. And then what was so fascinating to me, because it feels like everyone is saying they have ADHD, is 100% of the videos in their study on ADHD were misleading. I mean, that’s just what. What are we doing? And then the algorithm puts you in a silo of misinformation, and so it just gets reinforced. But going back to what you were saying about some of them are cool. There are cool diagnoses, and then there are uncool diagnoses. And there was a study on stigma and mental health awareness, and what they found was the stigma for certain diagnoses, anxiety, depression, ADHD, and in some ways, very high functioning autism. If you are one of these exceptional people, the stigma for those went down. If you’re calling yourself neurodivergent. So these are not like the people with autism and the young people that I worked with in the New York City public schools who are non verbal, who are extremely low functioning. That is in the uncool category. So also anything with psychosis, the stigma against those has gone way up, which is really fascinating. So we’re just in a very weird, scary position. I interviewed Martin Rafferty, who’s with youth era, which is an exceptional organization in Oregon where they really help youth. And he said something really, really scary to me, which is I asked him about recovery, because if you are over identifying with these diagnoses in a mental health system that does not mention recovery, you are just given the diagnosis and sent on your way. Like, there is no such thing as recovery. In 25 years, I never heard the word recovery. But he said that young people who he works with and he’s very tapped into, they have disavowed recovery. They don’t even want to recover. So they really do embrace their diagnoses. They refuse it, and they want the negative symptoms, they want the positive symptoms. And some of that can be good because being a human means that, you know, there’s mental and emotional suffering. We don’t get to escape that, but they’re pathologizing it, and that can be very damaging.

00:10:47 – Eric Zimmer
You and I talked about, and I’ve talked about with lots of people on this show, this idea of diagnoses and labels and all of that, and I think they are useful until they’re not. And that’s my framework for so many things, is like, is this useful? And I think that’s the lens to look through these things because to your point, the DSM is the diagnostic statistical manual. It’s the way that psychiatrists and psychologists look at and say, oh, you know, you have these symptoms. That means you have this thing, or you have these symptoms for three months, then you have this thing, right? That’s for people who are wondering what DSM. That’s what it is. It’s the guidebook. And the point that you made, which is good, is that it’s a highly unreliable guide. Meaning, like you said, there’s no scientific validity to it. There’s no, like, I can give you a test and find out that you’re bipolar, too. And so I could describe my symptoms and you said this to one psychologist, and they could be like, you have bipolar, and I could describe it to another psychologist who could be like, you have depression, and another one who might say, you have ADHD. Right? And according to the DSM, they would all sort of be correct in their own way because these symptoms, they just cross over in so many different ways. And so taking on these labels or diagnoses, getting back to where I started, can be helpful, like I said, until they’re not, because you’re taking on an identity that in some ways doesn’t even really exist. We don’t know what mental illness is at this point. I mean, it’s sort of frightening to say, but we just don’t. We don’t understand the cluster of symptoms that seem to show up. The models that make the most sense to me are sort of the biopsychosocial models, which are saying, like, this is some combination of biology, psychology and culture. And the people you’re around. I think that’s the best model for addiction, too, which is the thing I’m most familiar with. And so we don’t know what it is. And what you’re doing so well, you did in Pathological, and you’re doing here is trying, I think, to get us to loosen our grip on believing things about ourselves that may or may not be true and being open to the fact that this is more fluid than we think it is. And the important thing that you’re talking about is this idea of recovery.

00:13:15 – Sarah Fay
Yeah.

00:13:15 – Eric Zimmer
Say more about recovery from mental illness.

00:13:19 – Sarah Fay
I just wanted to stop. I realized I just launched into the DSM. So maybe I’ll define the DSM. Okay. So that we can put that back in. So I don’t just launch into this. But the DSM is the Diagnostic and Statistical Manual of Mental Disorders. It started in 1952, and it was started by a small group of psychiatrists who at the time, unsurprisingly, were white, heterosexual men. And they came up with about. Close to about 90 diagnoses. And it was a way to try to order and categorize and take mental and emotional pain and give, essentially, a language for doctors to talk to other doctors about patients. It was never meant to be in the hands of patients, ever. So until the 1980s, patients never knew their diagnoses. You just got therapy. You never needed to know it. And then in 1980, they did a revision of the DSM that was really monumental, and it created a checklist of symptoms for diagnoses. And so basically, you could go through and say, yes, insomnia, yes, anhedonia, which is a loss of interest in things. Yes, eating too much. But note, these are symptoms of depression in the DSM. But note that it’s also sleeping too much, sleeping too little. It’s eating too much, eating too little. And you’re like, well, I’m gonna fit one of those.

00:14:41 – Eric Zimmer
Yeah, exactly.

00:14:42 – Sarah Fay
Yeah. They turned it into a checklist, and they, you know, kind of the criticism was it’s this restaurant menu of diagnoses, and that it was very reductive and it wasn’t helpful. This was from mental health professionals. Now, the twists that happened in this sort of plot of how diagnoses have come into the culture is that the DSM became a bestseller. It went on the bestseller list, and it became the American Psychiatric Association’s primary income stream. I mean, that’s just phenomenal. Besides big pharma. So suddenly it was in the hands of all kinds of people. So it got into the public, and then more and more and more. And they expanded the diagnostic criteria and added diagnoses so that we now have over 300 different psychiatric diagnoses. So it’s very hard not to find yourself in the DSM. I mean, we all have been there, and especially when we’re not well. And again, it’s very different when you’re dysfunctional. I was to the point that I could no longer live independently. They were basically telling me that I would most likely die by suicide and I would never hold a full time job, etcetera. So I was really given this very, very dismal prognosis. So that’s the DSM.  

In terms of recovery, recovery is another well kept secret, for some reason, in the mental health field. Part of that is because there is no recovery in the DSM. There’s no page on recovery. I think it’s mentioned once. And so, really, we have mental health professionals right now who have no training in recovery. That’s phenomenal. Can you imagine if all of our doctors knew nothing of recovery from broken bones and Afib and stroke or whatever? I mean, that’s what we’re living in right now. And so if you went into a doctor’s office and he told you you have Afib, see you. Like, have a good day, you know, here’s some medication. You will never recover. And, you know, Afib is hard. You know, there are certainly physical diagnoses that we don’t recover from, and not everyone will recover from mental illness. But my feeling was that I was not given the chance, and everyone should be given the chance. I had a psychiatrist who also really alerted me to the DSM and the realities of the diagnoses that we receive. And he’s wonderful. He’s a serious biopsychiatrist. I mean, he believes in psychiatry wholeheartedly. He’s not even a critic of it. But he was very honest with me, and he said, you know, these are flawed. These are just really flawed diagnoses. And that really opened my mind, and that’s why I wrote pathological, to bring that information to other people. And then he also told me a story, and we were talking about something. It was apropos of nothing. And he told me about a patient of his who had schizoaffective disorder. So that is a combination of schizophrenia with bipolar features. And so it’s a very, very grave prognosis. And really, I mean, the idea that you could recover is just not there. He never mentioned the word recovery, but he said she came from a wealthy family, and he treated her so they had everything at their disposal. That’s important because recovery, we don’t have a mental health system that supports it either. They had everything at their disposal and he said that he treated her and he wasn’t boasting in this way, but they worked together off all medications and became an executive at Google. And I was like, what? First of all, you don’t recover from mental illness. And two, you do not become an executive at Google. Now, I do not want to be an executive at Google, but it seemed to, like, embody health and productivity and wellness and all this kind of for better or worse, like, it seemed like, oh, that’s it. And I couldn’t believe someone had healed.

00:18:24 – Eric Zimmer
Yeah, I think it’s interesting, this idea of recovery, because, I mean, I was in recovery from addiction. I mean, that’s what we call it when you go to a meeting. I was in twelve steps, we call it recovery. And the idea is there is recovery. So it’s interesting, when I got my first sort of psychiatric diagnosis of depression, I think that I didn’t take it on in the way that you did because everything in my mind was in the context of recovery. I also had hepatitis C from my needle use and was treated for that. And I was one of the lucky few back then. It’s a lot more common now where it kind of just went away. So it was this weird sort of thing because the doctors didn’t know what to call it, because if you test me, you’ll detect that there is some degree of viral load of that. But it is so low that it hasn’t done anything and infected my liver in all these years. And so I’ve never known what to call it. Do I call myself cured? I’m not. I mean, kind of. It’s interesting to me that my view into mental illness was always one of that. There’s some ability to get better. I don’t know how much better. But it’s interesting to me that you took them on and the way they were presented to you as basically life sentences and very predictive of your future capability and capacity.

00:19:49 – Sarah Fay
Yes. And I did what a lot of young people are doing. I made it my identity then you are locked into it. You can’t recover. You don’t want to recover. It’s your identity. And if someone had told me what I’m talking about right now, and I’ve spoken to so many young people who are very resistant to this, I tell them I would have been too. It was my identity I didn’t want to lose that? Who wants to do that? But your analogy with hepatitis C, that is it. Because we’re never going to be without depression. We’re never going to be without anxiety. Psychosis is probably the most extreme example of a symptom that not everyone experiences. But distraction, irritability, insomnia, sleeping too much, eating too much, all of these symptoms are part of the human experience. So I think what you said is sometimes there’s a viral load there. It will always be present, but do we have it anymore? And people say to me, do you still have a diagnosis? And my psychiatrist did give me one. He had never told me. When I first went to see him, he said to me, I don’t know what you have. And that’s what kind of changed my whole view of diagnoses. And then after, when we were on the road to recovery, he’s since declared me cured. But here’s the confusing part. I am still on medication. I’ve been on it for ten years. It’s going to take me about ten years to go off of it safely. And so he and I are really working toward that, and it’s very hard to go off these medications. So anyone listening to this, please do not do it without medical supervision. I tell you, I’m on the ten year plan, and that’s okay with me. But so, wait, I’m taking a medication. Doesn’t that mean I’m still sick? And so, on his records, I still have a diagnosis, because that’s how you get medication. So it is very confusing. But I know for myself, well, first of all, I’m thriving in my life, and that is part of it. But I have terrible anxiety. I mean, just crippling my neck right now. So terrible because of things going on in my life. And that’s okay. It’s very different than it being a pathological condition. And I see the difference. I know the difference.

00:21:56 – Eric Zimmer
Yeah. I have not known for several years now how to talk about depression in myself. I don’t know what to say. I don’t know whether to say I still have it. I don’t have it. I’m prone to low moods. I’m prone to anhedonia, but not to the degree I used to be. And what’s a normal amount and what’s in the amount? That’s just my temperament, my personality, my makeup. And so I don’t know what to say about it. Like, I literally get sort of like, uh. I don’t know. I battled with, I struggled with. I had. I have. I don’t know what to say about that, because exactly to your point, with alcohol and drugs, I don’t really use the word recovered. We’ll get into that in a second. But it’s pretty easy for me to say I’m in recovery very heavily because it’s just gone. I just don’t do those things. And I haven’t for 15 years this time. These other things, as you said, are a lot harder because we all have anxiety at times, we all have low moods at times. We all have a feeling of disconnection at times. And so what degree of it becomes a diagnosis of something you have? And obviously there’s no right answer. And I think we’ve learned the same thing with alcoholism and addiction. They give you some strange twelve question test, and if you answered seven of them, you were an alcoholic. And now we know, like, it’s a lot more nuanced than that, right. All this stuff is on a spectrum. And so we talk about alcohol use disorder, and they’ll plot you somewhere on this line right between no problem to serious alcohol. I don’t know the exact terms, but we don’t talk about psychiatric diagnoses in that way, that you’re on some sort of spectrum. Right. It’s this idea that you cross this line and now you have this thing. Ellen Langer, who’s a professor at, I believe, Harvard, and she wrote a lot about mindfulness, but she also has written very compellingly about something she calls, I think she called them border conditions. And what she was talking about was there’s been a number of studies done. Let’s take somebody who is right on the line of diabetes or non diabetes. If you’re at a blood sugar of x, you are non diabetic, and a blood sugar of x plus one, you are diabetic. And this is a test where they’re actually measuring something, unlike psychiatric diagnosis, which are even farther off. But statistically, there’s no big difference in one point of blood sugar. But what she has found and others have found is that it makes a tremendous difference in the outcomes of those people. And you might think that getting the diabetes diagnosis is positive because now you get treated for it, but they find almost exactly the opposite. They find that the minute you are now in that category, you are treated differently and you do things differently. And they’ve seen the same thing in like children with, like IQ. Like if you’re like one point above, you’re in normal classes, and if you’re one point below, you’re in special ed classes and your outcomes are dramatically different. And it’s not because you had a one point difference. It’s because of what happened after that and what you internalized about yourself. And so even in these things, where we’re measuring something a little bit more than we are in psychiatric diagnoses, this labeling has profound implications.

00:25:25 – Sarah Fay
What you just said is so resonant and so important, and that’s what I found in my life, is that even if I hadn’t thought it was, you know, a death sentence, it still limited me so much, and it definitely dictated my path, no question. Now that I’ve recovered, there is a lot of regret. You know, I feel like I lost 25 years of my life to the DSM in some ways. And, you know, that’s not fair to put on a book, but it really does. It does feel that way sometimes. I think, what would I have done? Where would I be right now if I hadn’t been pigeonholed or said, you know, sort of slap with this label and thought that I was limited in any way. But it’s interesting. What you’re talking about, too, is, what is the measurement, and how do we do that? And I write about this in Cured. I didn’t want to tell anyone. And actually, the first time I was on with you, I thought, wait, I think I’m better. I thought, I think I’m really better. And I didn’t want to say anything. In our first interview, I didn’t feel like I could tell anyone. It was like a big secret, because I thought someone would say, one, no, you haven’t, and you can’t. And two, I just thought it wasn’t possible. I had not heard of the recovery movement. I had no idea that people had been recovering from mental illness since the 16th century and that this was a thing and that there were all these people out there advocating for it. I just had never come across it. And so I’d not told my psychiatrist at that time. But I went to lunch with my father, and I decided, okay, I’m gonna take a chance. And I said, dad, you know, I think I’m better. I think I’m well. And he looked at me and he said, I know you are. I know you are. And it was like, I get chills. Cause it was the best day of my life, and especially cause I’d had such a fraught relationship with my father. And now we are very close and just feeling like, oh, wait, he sees it. And we’ve talked about, and he said, I’ve never seen anything so complete. I’ve never seen such a complete, massive change. And so much of it came from believing I could. I mean, that’s it. So much of it was that. I mean, there were a lot of other things, and I really detailed them and cured. Learning how to manage my mind, learning my emotions. I had a panic attack last night. I knew now, okay, there isn’t something pathologically wrong with me. You’re having a panic attack. And sometimes we can’t do that for ourselves. But I really have learned to talk to myself. And then, of course, diet. I have a very extreme diet, and I don’t eat any sugar. I don’t eat any white flour. There are things I had to do, and these are things that we have seen really help. I drink no caffeine. I don’t drink alcohol. I obviously take no drugs besides psychiatric drugs. And, you know, I have two cats that I give my life to, so we know that’s very healthy. I go to bed at the same time, I wake up at the same time. There’s just a lot there that goes into recovery, that a lot of people are in a place where that would be very, very difficult. And then just going to. The term recovery is so interesting. So for cured, because I serialized it on a platform called Substack. So Substack is essentially, we could call it. It’s my own personal media magazine. So it is a newsletter. If you sign up for it, you will receive emails from me. But it’s also a blog. So basically, it is on the Internet, and you can go on there, and it would be like visiting a website. And so what I did was part of my dissertation. So I do have a PhD in literature, and part of my dissertation was on serialization in the 19th century. And I love it. It’s just so amazing. So all of Dickens’s novels came to people chapter by chapter. It was portioned out. We didn’t have single volume novels at that time, so in the 19th century. And so that was how storytelling really came to be. It was not.  here’s a book. So you can imagine television pre netflix versus television. Now, you couldn’t binge on a novel. And I’ve always loved that form. And so, I mean, Agatha Christie serialized, and F. Scott Fitzgerald. So it did move into the 20th century. And so I decided we went to my publisher with Cured, which was the sequel to Pathological. They had optioned my second book, and they passed. And part of the reason that they passed was that it’s not the book. And they said that it’s just that pathological came out at a time when, again, people just wanted their diagnoses. They didn’t want to be questioned, they didn’t want to be educated. And that has shifted so much. And there’s so much publicity now happening about the need for not getting rid of diagnoses. I, in no way, I don’t have a system to replace it, so I can’t do that. But it is about knowing the truth and empowering patients and empowering parents to know, okay, this is what this diagnosis is. It’s useful here. It’s not useful to this degree. And maybe I can help my child understand that and myself. So we went to them, but I spoke with my editor and my agent and they said, why don’t you serialize it on Substack and why don’t you bring it to people? Partly because I really wanted to enact social change. And my agent said the most phenomenal thing to me. She said, Sarah, books don’t incite change. They reflect on change, they reflect on social movement. And that may or may not be true across the board, but I think generally she’s right.

00:30:42 – Eric Zimmer
That’s an interesting idea. Yeah.

00:30:43 – Sarah Fay
Yeah. By bringing it to people and then I was able to record it. So there’s an audiobook. But what I was able to do as part of that, it’s this living thing on Substack. So I was able to interview other people who’ve recovered, so it isn’t just me to kind of give evidence of that. And their stories and their trajectory is so different from mine.

00:31:03 – Eric Zimmer
Right.

00:31:03 – Sarah Fay
Some of them still embrace a diagnosis, some of them don’t. Some of them, you know, are transgender and had addiction issues. And so there’s so many different dimensions to this. And then I was also able to interview so many people in the mental health field, those who do agree that recovery is possible and those who don’t. And that was also really phenomenal. So it became this other thing. I was able to interview Larry Davidson, who runs SAmHSA’s office of recovery. We do have an office, my friends. So there is an office in the us government that we have for recovery. So the US government has acknowledged it. It was early two thousands that they first acknowledged that mental health recovery was possible. And so the government has been trying to bring it to people for two decades, but because of big pharma, because of other things, it just has not gone. And because of people wanting their diagnoses, not listening to this idea of recovery, it’s just not gotten into the media mainstream. So it hasn’t reached people. Larry Davidson, who also is at Yale, which has an amazing center for recovery, mental health recovery, and they’re doing really the preeminent research on it. But what he said to me was recovery. The name of it is problematic because it is so associated with addiction and so it just was used and they haven’t come up with another one. And I use the term cured ironically, right. There isn’t a cure, right single, there’s no magic bullet. But can we cure? The verb? Can it be an ongoing process in our lives of living more well, whatever that means to that person?

00:32:56 – Eric Zimmer
Let’s talk about this idea. Recovery is the word that’s being used, so let’s stick with it for now. What is recovery from mental illness?

00:33:05 – Sarah Fay
So I asked my psychiatrist this when he declared me well, and for him he said it was that you have not had an episode in a year, so you have not had some sort of crisis in one year. Now that was him. So there is no overall definition of it, but there are two models. So there’s clinical recovery and then there’s personal recovery. And so clinical recovery is what we went by for a very long time. And that means that your psychiatrist declares you cured, well recovered, and it is purely their decision and they decide your trajectory. Now, the problem is with this, they call it the clinician’s illusion. And when you are in the mental health system, psychiatrists, mental health professionals, they see people who are not well. So their view is no one can recover, not all of them. But it’s understandable why they think that, because they’re only seeing us. But the minute we’re, well, we’re out of their office, we’re not seeing them anymore.

00:34:05 – Eric Zimmer
Twelve step programs have the same thing, right? What they see is the people who go out and come back. The idea then is if you go back out there and drink, you come back, because that’s all that we see. We don’t see the people who just disappear and either decide they don’t need twelve step help anymore or go back to some form of drinking that doesn’t get them to the same point. Right. And it is an illusion because you’re only seeing part of what’s happening and there are more scenarios out there occurring than what they’re seeing. So I understand why clinicians would have be the same way. Right. They see the people who are still suffering, right.

00:34:44 – Sarah Fay
And so it makes total sense. But because that’s not even in the conversation, it’s unlikely that a clinician’s going to say, you know, I think you’re well, and I think we can go for this. So there’s something called personal recovery, and that is when you and the clinician decide together that you are well. And that is why I think right now, as long as medical schools are not teaching recovery and as long as recovery is not a part of the DSM, the way it should be, what we need to do is really empower people to be saying, can we have this conversation about recovery? Can we talk about what is my path to recovery? What would that look like? And decide together when I’ve gotten there. Now, that doesn’t mean you stop seeing a therapist. I still see my psychiatrist because, as I said, it’s going to take me a very long time to get off medications. And I could have chosen to stay on medications. I mean, in some ways my body is fully dependent on them. If it turns out that I cannot get off them because the withdrawal symptoms are so bad, that’s fine with me. There are long term side effects I’d like to avoid, but if I can get it as low as possible, that’s great, I’m good, you know, so again, I don’t want people to feel this pressure of. Okay, then I have to be this normal person.

00:35:58 – Eric Zimmer
Yep.

00:35:58 – Sarah Fay
I’m so not normal. My life is so not normal. I cannot tell you, but it’s works for me.

00:36:04 – Eric Zimmer
Yeah. It’s interesting because you’re saying that you’re borrowing from the recovery movement, but there’s a couple different definitions. And one here is from the Depression and bipolar support alliance, where they say recovery is the process of gaining control over one’s life and the direction one wants that life to go on the other side of a psychiatric diagnosis and all the losses usually associated with that diagnosis. And I think the other thing you’re saying here, and you had misconceptions about what recovering might be, right. You thought it would mean you’re off all medicines, you thought it would mean you’re not in therapy. And I think, again, if we go back to the recovery from alcoholism, that’s primarily out there, which is twelve step recovery, that we see people are in recovery or recovered doesn’t mean that they don’t go to meetings anymore. Right. So it’s the same sort of idea. But you are having panic attacks. Right. Or had a panic attack. So talk to me about how that fits into the concept of being cured or recovered.

00:37:08 – Sarah Fay
We’re not going to be able to escape depression, anxiety, all these distractibility, irritability. Those things are still part of me. The difference in why it’s just a whole different world. And why my mind is so different is because I don’t think there’s anything wrong when those things happen. I don’t think it’s a sign that something’s gone horribly wrong. And before I did, it was an episode. Now, there are points where I was at in total dysfunction. And what I want to also emphasize is that, you know, I suffered from suicidality for five years. Chronic suicidality, that’s a very different situation. You know, again, those are extremes. That is not something that should be dismissed or, you know, or said, oh, this is just part of the experience, although some people argue that is part of the human experience and that we shame people for it in a way that we shouldn’t. And I believe that, too. I don’t think it’s, you know, definitely get help, but I think that also we tend to shame people. It’s got a lot of stigma suicidality does in a way that I wish it didn’t. So I don’t think that anything has gone wrong. I don’t rush to my psychiatrist. I do not change medication dosages in any way. And again, that doesn’t mean that someone who isn’t in crisis wouldn’t do that. But that’s the difference. I don’t need to do that. And it does change with time. But I’m also going through a lot right now. I run a business on Substack. I am a full time. I’m a writer. I teach at Northwestern. I mean, I have a very full life. So it’s not surprising to me that I have anxiety, and it’s not surprising to me that I have these lows because my life is so up. You know, it’s like so many things going on that when actually the weekend comes or I have a day off, I’ll find that I get kind of depressed. I get a little low because I’m going at this rate, you know, and.

00:38:59 – Eric Zimmer
That’S just very different.

00:39:00 – Sarah Fay
But the emotions are so uncomfortable and they’re so awful that I want to run from them, too. I want to say there’s something terribly wrong with me when I feel these. Lisa Feldman Barrett, she’s at MIT, I think, but she has a wonderful book on emotions. And when I read her book, that really helped me realize I didn’t even know what an emotion was. I didn’t know that an emotion was a sensation in my body. I had no emotion education. I was emotionally illiterate, you know, illiterate about emotions. And what I did was I really studied what they are. And I could say I didn’t know what anxiety felt like in my body. It just was terrible.

00:39:39 – Eric Zimmer
Right

00:39:39 – Sarah Fay
And now I’m thinking, oh, okay, wow, my chest feels like it’s about to collapse, and it’s just awful. And I feel like I’m jumping out of my skin, and all I want to do is stop this. Oh, I’m having anxiety. This is normal. This is a part of the human experience. One thing that’s really helped me is evolutionary psychiatry and psychology has been very helpful. So understanding that we are programmed for these emotions. Anxiety is a very helpful emotion when you are living on the savannah and you have to go hunt for your food and you’re being chased by lions. But when I open my email, I am not being chased by lions. And yet my body is designed to react that way. And so that makes me really understand, okay, this is just how I’m programmed now. I can understand it on an intellectual level. I can stop. I can just sit for a second, feel the terrible, allow the terrible emotion, not enjoy it, but accept it. And sometimes it goes away and sometimes it doesn’t. And then I live with it and I work, I go through my day, and, you know, that’s just how I’ve learned to really adjust.

00:40:46 – Eric Zimmer
Yeah. And that’s a really helpful way of explaining it. They also talk about recovery centering on three basic principles, improving health, living a self directed life, and striving to reach our potential. And again, I think the point you’re making is that personal recovery does not mean you’re free of symptoms. And that’s what clinical recovery would say. Clinical recovery is. You’re free of symptoms. And as we’ve said, some of these things, like depression is part of the human condition, or at least low moods. Right, right. So you’re not going to be completely asymptomatic. And so I think the question is, when is it bad enough that you feel like you want or need more help than you’re getting?

00:41:28 – Sarah Fay
I was just going to say that is why it is so important for patients and people to be empowered with, with all of this information. Right now, we’re just blind in this mental health system, and I don’t think the mental health system is bad. When pathological came out, I thought my editor and I and HarperCollins thought, we’re gonna get so much pushback on this from psychiatry. I was on NPR with the head of the steering committee, Paul Applebaum for the DSM with Thomas Insull, who was former head of the National Institute for Mental Health, both biopsychiatrists and both said, you’re right. The public deserves to know.  Psychiatry, the mental health system is not resistant to these things. It’s the public that is, and that is phenomenal. And they’re the ones who need that empowerment. And I think that we could all work together beautifully, beautifully, if people understood the information that I have in pathological and what’s in cured, and then again, talked to other people and spoke to others. And Thomas insull has a wonderful book on recovery as well. So really going toward that. But you’re so right that where it comes down to is it will be in the individual. Like, when is this a problem for me in my life? When am I not seeing it being a problem? But we also have to get to a place where mental and emotional pain isn’t necessarily a problem.

00:42:51 – Eric Zimmer
Right?

00:42:51 – Sarah Fay
That is what we think we have this happiness addiction, you know, in some ways, I don’t mean to use the word addiction flippantly, but, like, this happiness obsession, let’s put it that way. This kind of cult of happiness where we think we’re all supposed to be these happy, instagram y individuals, and it’s just not what life is. That’s not what it’s actually supposed to be like, and that’s not the full human experience.

00:43:12 – Eric Zimmer
It’s really tricky to know what is acceptable level of suffering. And acceptable is maybe the wrong word, but it’s the one that’s coming to mind. And I think about this a lot, right? I still have low mood. I have anhedonia, right? And these things will happen. And the nature of it when I’m in it, is to believe that it’s always this way, that always has been this way, and it always will be this way, and that is not true. And yet the question for me is, is it worth increasing my medication dose when I’m in the middle of one of those? And I don’t know. And the answer for me for years now has been, no, I don’t. I’m on a very low dose, and I’ve stayed on a very low dose largely for the reasons that you have described, which is our brains become dependent on them. It’s fascinating to me that you’re on a ten year plan. I thought I was doing really good to be on a one year plan in the past, which still seemed like an incredibly long time anyway, maybe we’ll talk more about that in the post show conversation, but it’s just difficult to know but what I like about this idea of personal recovery so much is that we become responsible for our mental health, and a doctor or a clinician is part of that, but it’s not all of it. And there’s all these other elements that you talked about. You’ve talked about diet, you’ve talked about sleep patterns. Right. And I’ve said for years, like, I throw the kitchen sink at my depression. Right.

00:44:47 – Sarah Fay
Yeah.

00:44:47 – Eric Zimmer
Like, it has been a lifestyle overhaul that has allowed me to be, I would say, very high functioning, but it’s been diet, it’s been exercise, it’s been sleep, it’s been talking to other people. It’s been doing things that I like. It’s been playing music, it’s reading books. It’s all of it. And I don’t want to position that as an ongoing struggle because the things that tend to make me better in that regard are also many of the wonderful things in life. And so I love this idea of recovery. I’m curious about recovery versus recovered, and this is a debate that has happened in twelve step programs forever. There is a phrase in the aa big book, we are people who have recovered. And so there are people who use that phrase, and there are other people that say that’s not accurate. Like, we’re in recovery. And I’ve always sort of, I think of myself as in recovery, not recovered. But again, we’ve sort of ascertained that my working with labels is fairly fluid, so I haven’t gotten too hung up in the debate. But is there a similar debate in the recovery movement in mental illness?

00:46:02 – Sarah Fay
We’re not even at that point yet.

00:46:04 – Eric Zimmer
Okay.

00:46:05 – Sarah Fay
I wish we were. That’s where we have to get. And I think that’s so, so smart and such a wonderful way to look at it, which is that maybe there isn’t an answer. Maybe it doesn’t have to be one or the other, that maybe what that indicates is a level of care that you need at that point or a level of support. Right. So if I feel like, because I’ve interviewed so many people who consider themselves either in recovery or recovered from serious mental illness often. So we’re not talking about what SAmHSA defines as any mental illness, which is high functioning. We’re talking about people who really went into a low functioning period of their lives, and some of them felt, no, I still have this diagnosis. I still very much identify with it. This is who I am and this is where I am. But I’m in recovery. I’m not sick anymore, whereas I have absolutely no interest in that, because I know how powerful my brain is. And that self fulfilling prophecy. I did it for so long that I don’t even want to know what’s on my medical records because I will adopt it. I don’t go by horoscopes. I don’t go by, I’m an introvert. I’m an extrovert. I don’t like because it just makes me into something, and I don’t want to be something.

00:47:14 – Eric Zimmer
I tend to agree. I take all those things, Myers Briggs or enneagram tests or all of that stuff with a huge grain of salt, you know, because I always find even answering the questions hard, because I’m like, well, you know, would you rather go to a party or stay home and read a book? And I’m like, well, what’s the party? What’s the book? You know, how much did I sleep last night? You know, like, what else? I mean, like, I can’t answer that. I’m going to need a. A whole lot more information to answer this question. And so, again, I find them sort of mildly interesting. But like you said, I will not go see a psychic. Even if I’m walking by, like, a free psychic. I’m like, no, I don’t want whatever you say, even the little bit that will get caught in my mind. I don’t want it there, good or bad, because I worry, like you, that, like, it will linger there in some way and in many ways. And you talk about this near the end, cured. Is that what we’re talking about here, to a large degree, is, what is the story we’re telling ourselves about our mental illness or whatever. And stories are extraordinarily powerful. The story we tell ourselves about it is really important. And you’ve chosen to tell yourself a story of, I am recovering. I am recovered. And that. That has been really important for you in getting to a place where you’re much better than you used to be, if that’s a phrase you’re comfortable using.

00:48:42 – Sarah Fay
Yes, 100%. I mean, I consider myself well, and I don’t have a diagnosis, all of that. And yet, if someone else wanted to say, no, I have a diagnosis. I’m in recovery, and I am living. What you just said, which is the definition of it is striving to reach my full potential. That is so important. And some people might condemn that and say, it’s so capitalist, and, you know, all of this probably, but striving to reach your full potential could be being a great mother to my cats.

00:49:15 – Eric Zimmer
I have absolutely right.

00:49:16 – Sarah Fay
I mean, it means that I am gardening. Yeah. I’m gardening every day, and I am making sure I carve out that time for myself. I am sleeping well. Right? Striving to reach my full potential does not mean I’m an executive at Google. I don’t want anyone to go work at Google. You’re fine. 

00:49:54 – Eric Zimmer
Part of your book that made me laugh cured, which is not a book yet. It’s a serialized Substack. And your Substack is wonderful. We’ll have links in the show notes to it. But you talk for a little bit about Jaco Wilnick, who, for people who don’t know, he is like, an ex military podcaster, but he is all about, like, you know, you go get it, you kill it, you crush it. Like, discipline, mental fortitude, toughness. Right. And you compare him, maybe even in the same sub stack, with people like Brene Brown and Kristen Neff.

00:50:28 – Sarah Fay
Yep.

00:50:28 – Eric Zimmer
That cracked me up. I just thought of, like, the jocko Willnick Kristen Neff cage match, and that just made me. Made me happy and made me laugh. I’ve interviewed Kristen a couple times, and she’s wonderful. But I think about this also, and I think about it in this way, that there is a place for a jocko will nick type approach. I think with my thoughts, where I sort of say, like, enough. No more. I’m not thinking this anymore. And I may have to do that 500 times, and at the same exact time, there is a place for. Okay, I can’t seem to fight you. Like, I’m just gonna let you be here.

00:51:07 – Sarah Fay
Yeah, right.

00:51:08 – Eric Zimmer
Knowing when to do which of those things I’m painting with very broad strokes, but when to sort of fight and adjust and when to allow and accept when it comes to the contents of our own brain is so nuanced. And so I just loved putting those two in the same sort of sentence group because it defines for me very well that struggle or what that challenge is. And it’s one that I talk about on this show all the time, trying to figure that out, that nuance.

00:51:41 – Sarah Fay
Yeah.

00:51:42 – Eric Zimmer
Where have you landed with it?

00:51:43 – Sarah Fay
Well, it’s funny because that was a period of time I was in the cult of Jaco. As I say, there’s just this cult around him. He loves jiu jitsu, and he’s like, do 100 burpees and tell me if you feel bad. You know, that’s kind of like what he said. And so I was like, okay, I’ll do 100 burpees and see if I feel bad.

00:52:00 – Eric Zimmer
The answer is yes, I do feel bad.

00:52:02 – Sarah Fay
I feel worse. Yeah.

00:52:03 – Eric Zimmer
At least for 75 to 85 of those burpees. I’m feeling worse. 

00:52:08 – Sarah Fay
But when I was in partial hospitalization programs, it was the cult of Brene Brown. It was the cult of Kristin Neff, who. Brene Brown. I feel like with vulnerability and the sort of cult of vulnerability that can be very hard people from marginalized communities, it can be very difficult from people who’ve had suffered from mental illness. We are already vulnerable, like a white woman with a great job and, you know, upper middle class. And, you know, to make yourself vulnerable is very different than someone who is in a psychiatric hospital. You know, doing that, it’s, you know, it’s just so, so different. So, you know, I understood that. But at some point, what I had to do for my recovery was to be hard on myself. I just did. And I just had to say no. And I did end up having a life coach, being in a life coach’s program. And one thing she said that stayed with me is that your brain is like a toddler running around with a knife. Your brain is just wild. I think of it as, and this is, again, evolutionary psychiatry and psychology. Our brains are evolutionarily designed to keep us alive. That is it. They are not designed to make us happy. They are not designed to give us what we want to make us. They are designed for us to stay alive, seek pleasure, and avoid pain, and that is it. And so when I’m negative, that’s what my brain is designed to do. So I just say, I get it, Brain. You’re looking for danger. You’re looking for everything to be terrible so that you keep me alive. And I always say, thank you. Thank you, Brain. You’re doing a great job, and you’re awful. So I’ve learned to really talk to myself in a very sweet way and get to know my brain and have a really good relationship with it and just get that it is just very, very mistaken most of the time. Now, sometimes there are dangers, and that’s real. So I also don’t want to discount it. So sometimes I sit down, and I’ll just write down my thoughts and look at which of these are facts. Okay? So, basically, and this is, again, something a life coach taught me, which is so if I write them all down, you know, she’s horrible. My cats hate me. Whatever it is, none of those are facts right now, right? So if it’s not a fact, it’s not necessarily a danger. And so then I can kind of piece it out and say, okay. Until it’s a fact that can be proven in a court of law. Law. And we could get into whether or not they’re really facts and all of that. But then I say, if it is a fact, though, you know, like, my business is failing, right. I get more specific. I’m losing subscribers or something. I’m not. But, like, if that were happening, that’s real. And as a business owner, I should look at that and say, okay, but that’s a business problem. That’s a math problem. That isn’t something, you know, terribly wrong with me. So being able to distinguish between what, what is fact and what is just my brain trying to take care of me and a thought of, we’re in danger, you know, it’s always on high alert.

00:54:59 – Eric Zimmer
I think that you sort of hit on where I land generally with this, which is, I am extremely kind to myself and I don’t let my brain just run wild. And I think Kristin Neff actually does a decent job of describing this when she talks about what self compassion is. Right. Because she says, like, think about a good parent, right. A good parent is not going to let the child eat all the ice cream. Yeah, but they’re also not going to be like, you pig, why would you want to eat all that ice cream? Right. They’re simply going to say, like, sweetheart, hey, look, you can’t have that ice cream. I know you really want it. But, and they maybe if the context is there, explain, you know, here’s why. You’ll get a stomach ache and blah, blah, blah. So I think that that seems to be the answer. But people, I think, often think that being, being kind to ourselves means we’re not accountable to ourselves. And so I’m often sort of trying to strike that balance now in my mind of Jocko and Kristin Neff. I wanted to ask you about writing down your thoughts because you talk about this a fair amount in cured, and I’m curious your process for it and when you do it, because thoughts are, they’re just constant. Right. If I was to write down every thought I had, I would just simply sit here and just be writing all day long. Thought, and this thought, that thought, this thought. So when are you doing it and what are you doing?

00:56:27 – Sarah Fay
Yeah.

00:56:29 – Eric Zimmer
What’s working for you? Yeah.

00:56:30 – Sarah Fay
Writing down all my thoughts would be frightening.

00:56:32 – Eric Zimmer
It’d be like a Jack Kerouac novel. You’d be like, all right, this is not, you know, so when I first.

00:56:36 – Sarah Fay
Started doing it, I would do what the life coach I worked with called a thought download. And I did it every morning.

00:56:42 – Eric Zimmer
Okay.

00:56:43 – Sarah Fay
Some people might think, oh, morning pages or something like that. No, it’s not quite morning pages, but it’s a similar idea, which is. So I would just write them in a line. So it’s not a journal. It’s just one line thought. One line thought, one line thought. And I would just do it.

00:56:57 – Sarah Fay
At first, I didn’t want to do this because I’m a writer. I feel like writing things down are very powerful, and if I wrote down my garbage thoughts and my negative thoughts, it would kind of make them more real or a little bit like, imprint on me. But so far, I’ve found that does not happen. And then what I would do would. Was pick out just one thought that was troubling. And then I would look at it, as we said, from this more educated point of view, which was another person that I’ve learned a lot from, calls it the four ends. How can I normalize this? Why would it be normal that I’m thinking this extreme thought, like, she hates me? Well, that’s because we got into an argument. Of course I think that. But is it true? So I used to do a process of looking at what’s the circumstance? And this is, again, from a life coach named Brooke Castillo. So I want to give credit where it’s due. She didn’t make it up, but she just does it in a way that people will probably recognize this. But you kind of look at the circumstance, and then you put your thought in, and then how does that make you feel and what actions do you take and what’s the result, and then how would you want it to be different? So I did that every single morning and night while I was recovering. I mean, every single morning and night. And I would do it during the day, too. So when I would have very crippling anxiety, I would do it, things like that. But then after a while, since I’ve now, you know, I don’t need to do it as much. I can kind of coach myself. I can basically talk myself out of things in some ways, but I’ll still do it. As you were asking, I probably should have done it last night when I was having my panic attack. It did go away. But whenever it’s interrupting my life, basically, when my mind has stopped me from going about my day. So what does that mean? Well, I do write down what I’m going to do every day. I don’t give myself this empty space. I know some people love that, and it’s considered freedom. I find a lot of freedom in. I know what I’m doing each day, because then it allows me to say, okay, wait, no, I’m not really doing what I want to do. So, again, going to these measurements, is this problematic? I just have ways of kind of measuring it, and that’s just been really helpful for me.

00:59:13 – Eric Zimmer
Yeah. I don’t know who said it, but the phrase structure liberates for some of us is really true. I think for some of us, structure is actually very freeing. It’s not that way for everybody, but for some of us, the key being, of course, that we get to decide the structure. Structure imposed upon us is not liberating, but structure that we decide that we’re going to put in place tends to be.

00:59:34 – Sarah Fay
I was just going to say, the other thing that was really helpful for me was Ethan Cross, who you interviewed, has a book called Chatter, where he talks about self talk and just how we speak to ourselves. And I spoke to myself horribly. I always said it was like a mean fifth grade girl on the playground. Just so mean and so really learning how to monitor that and just say, like you were saying. Say to myself, like, no, we don’t talk to ourselves like that anymore.

01:00:01 – Eric Zimmer
Yeah, there’s another great book out there. We interviewed him. His name’s john Acuff, and it’s called Soundtracks, and it’s about a similar idea. We are at the end of our time. You and I are going to continue in the post show conversation, talking all things about this, but we might be talking about medication. We’ll see. I don’t know exactly, but listeners, if you’d like access to this poorly defined post show conversation or all ad free episodes, and to be part of our wonderful community, we’d love to have you. Oneyoufeed.net join. Sarah, thanks so much. Such a pleasure to get to see you again and talk with you again.

01:00:40 – Sarah Fay
So great to be here. Thank you. Eric

01:00:57 – Chris Forbes
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