I think sometimes our conversation the reason why it goes to pill shaming and big pharma is bad, which you know that's a deserved reputation that they have, is that we're skipping the real problem, which is that DS and diagnoses are too easy to receive and are being given out too easily. 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, how they feed their good wolf. Thanks for joining us. Our guest on this episode is Sarah Fay, and author and activist. Her writing appears in many publications, including New York Times, The Atlantic, Time magazine, and she's also on faculty in the English department at Northwestern University. Today's Sarah and Eric discuss her newest book, Pathological, The True Story of Six Misdiagnoses. Hi, Sarah, Welcome to the show. Hi, thank you so much for having me. I'm such a huge fan. As I was saying, well, I'm so happy to have you on. We're going to be discussing your book, Pathological, The True Story of Six Misdiagnoses. But before we do that will start like we always do with the parable. In the parable, there's a grandparent who's talking with their grandchild and they say, in life, there are two wolves inside of us. There are always a battle. One is a good wolf, which represents things like kindness, bravery, and love, and the other is a bad wolf, which represents things like greed and hatred and fear. And the grandchild stops and thinks about it for a second and looks up at their grandparents says, well, which one wins, and the grandparents 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. I've thought so much about this and it makes me think of mental health, but not in the way you might expect. So a mentally healthy person, someone with mental health sees two wolves and actually sees, you know, the wolf giving quote unquote good emotions and the wolf giving quote unquote bad emotions or transferring them, and can choose between them and can feed one or the there. And my experience of mental illness is that it was not that concrete. It was a confluence of emotions at all times, and they got confused, and they often cascaded over me, and I couldn't have a command over them, so that it felt as though at times both wolves were like eating me, or I was sending them off, or I was chasing them, or they were chasing me, And so it was almost the wrong scene. That mental illness really brings about a lack of self awareness that I was striving for at all times. But I didn't have the self awareness to be able to choose one of the wolves and feed them at the time. And I have that now, which I am so grateful for. Yeah, you define somewhere, you said, this is how I define mental illness. Mental emotional and behavioral responses that don't correspond to reality. And render the person acutely dysfunctional. And I think that ties to what you just said, which is that our mental, emotional and behavioral responses don't really correspond to reality we can't see clearly exactly, and those are very different from DSM diagnoses. So the diagnoses, the mental health diagnoses that we receive, come from the Diagnostic and Statistical Manual of Mental Disorders otherwise known as the d s M. And that's a book. And I didn't know that at the time, and when I found that out that our diagnoses do not come from scientific discoveries, do not come from medically on high, but that they come from this book. And I started researching that book because I'm a journalist, and found out that the book and its diagnoses are determined by a group of mental health professionals based on their opinions and their theories and little else, so not hard data, and they're really hypotheses of trying to categorize our mental and emotional lives, but not anything to necessarily rely on. The Other thing about d s M diagnoses is that they can't define dysfunctional, and that's what a d s M diagnosis is really supposed to rely on what's the level at which someone is categorized as dysfunctional. The distinction between mental illness and d s M diagnoses is that serious mental illness in particular which I had or have, means really losing the ability to function independently and in an inability to live independently. I couldn't live independently for five years, and there is an extreme situation happening. And that doesn't mean that all of us don't suffer in our mental and emotional lives. We do. And the d s M has attempted to really encapsulate and try to essentially diagnose as many people as possible and give them a d s M disorder. So let's back up a little bit from that for a second. But were diagnosed with six different things over the course of your life, tell us what those were. I was diagnosed with anorexia when I was twelve. Then I was diagnosed with anxiety disorder when I was in my twenties, and major depressive disorder also in my twenties. When I was in my thirties and in a doctoral program, I was diagnosed first with attention deficit hyperactivity disorder, then obsessive compulsive disorder. And then finally I was diagnosed with bipolar two and then bipolar one. So my diagnoses though also between obsessive compulsive disorder and bipolar one. I was also told that I had depressive and anxious elements, is what they called it. So again giving me comorbid diagnoses is what they're called. And so what you're saying about a mental health diagnosis is they all come from something known as the d s M five, the Diagnostic and Statistical Manual Total Disorders, as you said, and they're based on opinion. They're not based on like, oh, I can do a lab test and find this thing out. I can do an X ray or a cat scan or any number of other things where I can sort of confirm a diagnosis. Although we can do this with I think certain types of dementia right postmortem we can sort of go yep, okay, it was Alzheimer's right. But everything else there's no there's no marker for it. So what we're doing is the psychiatry community is going, all right, this is what are people we think are best qualified to do this? Think roughly with these look like, how many diagnosis do we have now in the d S M. Five. What's difficult is that it depends how you count them, which says a lot about the arbitrary nous of the books. We should be able to say definitively, but we started with one eight in the d s M one and now have five hundred and forty one diagnoses, actually five hundred forty two with the new edition of the D s M which is coming out in March. So you were diagnosed with six different things. Now you're clearly not saying that you weren't suffering mental illness during those periods, but you also sort of reject the diagnosis. Tell me a little bit about that journey for you and how that fits together in your mind now, And going back to what you were saying, D s M diagnoses lack validity and reliability, and validity means, as you were saying, that they have an external reality outside of self reported symptoms and the opinion of a clinician. But docent diagnoses don't exist outside of that. So, as you said, there's no tests, no X ray, nothing we can do to prove a person has the diagnoses, diagnosis, or that the diagnosis even exists in objective reality. The other thing about them is that they aren't what's called discrete disease entities, and all that means is that the symptoms overlap. So the reason I received six different diagnoses, and the reasons so many people receive different diagnoses is because the diagnoses aren't solid, they aren't stable as categories. And when I say they were hypothetical, there's a really disturbing story about Robert Spitzer, who is the architect of the d s M three that was in and it was really the addition that pushed us toward the brain looking at mental illness or mental dysfunction in the brain, not the mind, and not neurosis, but disease. And when he was asked why major depressive disorder you had to have five of nine symptoms, he said, well, we just went around the table and everybody thought that the six just sounded like too many and four sounded like too few, and that is the same diagnosis we have today. So to say that their arbitrary reliability is what the d s M hoped to rest on after that. So once they said yes, we have no validity, and psychiatry completely admits to this. I mean you could ask any psychiatrists and they would tell you. Thomas Insel, who was the director of the National Institute for Mental Health, came out and said DSM diagnoses have zero percent validity, and Stephen Hyman, who was also director at the n i m H, said that the d s M is an absolute scientific nightmare. So again I'm just quoting them and these this is what I discovered as a journalist when I was really trying to crawl out of my time at my darkest and so reliability though, is basically saying that two different clinicians can see the same patient, possibly at the same time, and come up with the same diagnosis. And the reliability scores of d s M diagnoses are atrociously low, and they have also fudged how the scoring is done to make certain diagnoses acceptable. So, for instance, generalized anxiety disorder, which is one of the most commonly diagnosed disorders, which I received, has a reliability score on a scale of zero to one of point to and the only ones that score point seven are above. As you mentioned, our dementia and rare chromosomal disorders which can be biologically proven. As you said, you alluded to something there, which is this sort of back and forth in the psychiatric community between sort of a mind neurosis model or a brain disease dilemma, like which is it right? Which reminds me a little bit of the nature and nurture debate, to be honest, it's got a hint of that to it. Which the answer, I believe pretty firmly is very clearly both. Right. There's clearly an element of both going on here. But you say that, you know, psychiatry has been wrestling with this for a long time. Yeah, absolutely, for at least a century and a half, if not longer. And so the ds M three where we moved towards brain and disease psychiatry, and Robert Spitzer really wanted the discipline to be treated as a legitimate medical field. You know, they do have m d s and they did want psychiatrists to be treated the same as physical doctors or general medicine. And they were getting away from neurosis to the point that they removed the word from the d s M between the d s M two and the d s M three. And there's nothing wrong with that, but what's fascinating, So from until now we've really been pushing the brain disease model and we've told people that they are caused by a chemical imbalance, that diagnoses like major depression are caused by a chemical imbalance. Of this country still believes that the chemical imbalanced theory is true. It is completely a myth. It is absolutely not proven, and it was debunked about twenty years ago. But the d s M is so much a part of our cultural lives that we have taken up certain aspects of it and moved away from the truth. In many ways, the mind has always troubled psychiatry. But what's wonderful is Thomas Insol, who I mentioned, who as a former director of the n I m H has a book coming out and in it he says we were essentially mistaken in pushing the biological model and leaving out the social elements and aspects that so come into play. And for him to say that, I mean, he had spoken out about the d s M very strongly, but for him to write a whole book about it, it's really wonderful to think of that psychiatry. That's that's a very big move and a huge manacopa for psychiatry to give us. And so it makes me very hopeful because a biological answer it was funny you were talking with Johann Harri and he mentioned cruel optimism and in many ways, you know, giving a simplistic answer to a complex problem. D s M diagnoses and the idea that they're biological is a simplistic answer to a complex problem. That's right, and it really it helps. It allows us to leave out social you know, social injustice and economic inequality that leads to poor mental health. Yeah, it's much safer to say. I mean, I I don't even know what the right term to call some of this stuff is. I sort of like the term syndrome because it indicates there's lots of causality. You know, I look at myself and I have had what would look like depression, right, I've been diagnosed with depression. I have been treated for depression. I have what quote unquote feels like depression. But cause wise, I mean, I'm like, who knows. I mean, it could be so many different factors. It's almost impossible to unwind, you know, like what all causes these very complex things? And I agree with you. When you sort of start to see multiple things that all have the same symptom profile, you go there's something maybe that we're not understanding here. There was a Jen's Hopkins study that looked at patients diagnosed with schizophrenia and they were reassessed by another clinic and half of them were given diagnoses mood disorders or anxiety. Now, schizophrenia with psychosis and anxiety and major depression, those should not overlap to the point that fifty of people you know are being reassessed can't tell them apart exactly. I've good a question about the chemical imbalance theory. Is it that it's been debunked or is it just simply that we have no evidence to say whether that's happening or not. We haven't been able to prove that there's a chemical imbalance going on. It very well could be. We just don't have evidence to say this is what it is. Specifically, is that accurate exactly? And the thing about the chemical imbalanced theory is that the reason why it's been debunked that theory it was always the theory to begin with, when you know it was when it originated, it had not been proven and then was brought to us, but we tended to believe it wholeheartedly. The thing is, there are far too many neurons we have. There's no consistency in terms of you know, which subjects are depleted in in certain you know, dopamine or serotonin. None of that has been proven. But whether or not mental illness exists in the brain and is caused biologically, I believe that that's possible. I'm on medication and I love my medication, and I would not be well without my medication, and so and I see a psychiatrist and I respect him greatly. So clearly there's something that could be biological. But what Thomas Insel said is that we will never find it with d s M diagnoses because they're hypothetical. So we'll never prove the chemical and balanced theory or biology of a d s M diagnosis, but possibly mental illness right right, And I think you get into the it's both kind of thing, because you know, I mean, ultimately, it does seem at some level we are a bag of chemicals, right, and electrical fire rings, you know, because we can go in and we see through brain injury like you do that to that part of the brain, and oh god, well that's not so good. Right, So there's clearly a biological underline. And I often say, like, okay, so maybe it is. Let's say it's it's certain neurochemicals. I don't know exactly what they are. I can affect those sort of more directly by taking a medicine, and we're going to talk about medicine a little while, but I think I also affect them when I climb on that exercise bike over there and ride really hard, or when I talk to a friend, or like, all these things are at the most based biological level. Changes are happening in our neurochemistry based on things we're doing. So one way to work with it is directly with the chemicals themselves. But frankly, everything we do is affecting that sort of thing. So again that's why I always end up with the very profound like it's it seems like it's got to be both exactly and the only danger to me about the biological explanation, well, there are many dangers, but one I think we've we've we've incorporated it and have come to leave it far too ardently. But what's really difficult about it is when we say it's biological, the either insinuation or actual outright telling is that these diagnoses are chronic. There is no evidence to suggest that any diagnosis is chronic. I went for a walk with a friend of mine and her fifteen year old daughter was diagnosed with major depressive disorder and she was put on an antidepressant, and my friend said, she's going to have this for the rest of her life. I don't know what I'm gonna do. She's not gonna be able to go to college. We have to reassess. And I said, there's no proof that she will have it for the rest of your life, but we're believing it. And so one thing I really call for in my book and the reason why it's something I wish I had had, which is everything that's in my book, it's an exit strategy. So when you see a mental health professional or your primary care physician who diagnosis is really giving out. The most diagnoses are primary care physicians, you are given an exit strategy, meaning here's what we're going to try a treatment, here's what we're gonna do when your symptoms abate, not if, but when yes, Because imagine if we told cancer patients you're gonna have cancer for the rest of your life, and how much recovery would we see, how much you know, there'd be no cure agreed. Yeah, And I think the other thing that the medical diagnosis has caused that is problematic is the idea a we've got primary care physicians diagnosing instantly with very little knowledge and handing out psychoactive chemicals. But secondly is the idea that again if we just say, well, this is just a brain thing, if you take this pill, it's okay. But again, my experience with mental illness or addiction, or and looking at countless other people, is the best way to get better is sort of a holistic approach to lots of different things. It might involve a medicine, it might involve certain lifestyle changes, it might involve talk therapy. But when we just go here's your pill and you go on your way, we're not really addressing what could be many of the underlying factors that you mentioned social factors, right, but we've also got just lifestyle fact I mean, there's so many different things. And that's always what I've thought is problematic about this primary care physician and over prescribing is that we're taking a very simplistic view of something to me that seems to be extraordinarily complex. It took until I was in my forties to see a psychiatrist. All of my diagnosis came from primary care physicians. That's any to me. It is because so much of when we talk about these things, we tend to attack psychiatry, and there good reason to attack psychiatry in some ways. But I think primary care physicians diagnosing is really a huge problem. As you said, it's just they have very little training, as you mentioned in giving out psychiatric diagnoses, and that training all exists on typically impatient the most extreme cases. So seeing people, as you said, for fifteen minutes and giving them a diagnosis is it should be unacceptable. At the same time, I understand they're trying to do it to give people access to care. That's right, that's right. The motivation behind it right, right. It seems to me that what you've got is we've had a little bit of an overcorrection, right, which is like we're way over here, and mental illness is incredibly stigmatized and it's this really awful thing. Nobody wants to talk about it, nobody wants to be diagnosed with it. To the other extreme, which is like we'll walk into your doctor. I mean every time I go to the doctor, I get like an eight question quiz I know now better than to you know, Like I just answer fine, fine, fine, fine, fine, fine, because I just don't really want to get into it with my primary care physician. Right, but I get again what we're trying to correct for, but it feels like we overcorrected. And this all reminds me of any reference it in your book a little bit how we diagnose alcoholism and how we talk about alcoholism, because alcoholism got labeled a disease that was a vast improvement from moral failing. Right, it was a vast improvement from moral failing. And when you start to really break it down, you go, Okay, this doesn't really quite make sense to think of this as a disease in the classical sense, because again we're diagnosing it based on like, here's twelve questions. How do you answer the twelve questions? If you have seven, you're own alcoholic? If you have five, how do you do? You know? I mean, it's not a real thing that you can diagnose. And yet we made great strides by at least moving towards we're moving away from moral failing. But now we've gone, you know, all the way to it's just biology and that seems like we overshoot the mark. And the other thing that's happened really the destigmatization of mental illness has backfired. And what's ended up happening is that some diagnoses are socially acceptable and some art so anxiety depression, a d h D not a problem. Yes, you know, those are acceptable, They're common. No one's going to It's not that you wouldn't be stigmatized. I'm not trying to lessen that or feel the stigma of that. But then you have schizophrenia and Schizzo effective disorder, and the stigmatization of that. Studies have shown of those diagnoses has increased. So we really have kind of the have and the have nots, and unfortunately those are also the people in need of the most care. Alan Francis, who was the chair of the d s M four task Force, had a great quote or a very telling quote. He said essentially that those who don't need the most care are getting the most care to their detriment, whereas those who need the most care aren't getting it. And certainly when we look at our prisons and jails, that's absolutely happening and our homeless population. I'd like to pivot a little bit and talk about diagnosis in its positive and negative senses, because I think getting a diagnosis it can go either way, right, it can be a really positive thing in that we're able to sort of get help. We're able to go, oh, gosh, okay, what's wrong with me? Someone might know something about it. There can be real benefit to diagnosis, and we know that we can become associated with the diagnosis. We can take on that diagnosis. We can it's so strongly identify with that diagnosis that it makes a sicker. So in your mind, what's a reasonable way that someone might think about navigating that so that they get the benefit out of a diagnosis without getting the negative pieces of it. That's what happened to me. I identified so strongly with each diagnosis I was given, and I talked about it in the book, how easy it was to slip into that. I don't think there's anything wrong with that, necessarily, if I had known the truth about the diagnosis that I was identifying with. I believe they were biological. I believe they were caused by a chemical imbalance. I believe they were chronic. Every single one I was told that they were chronic. I was told that my life had shortened when I was diagnosed with bipolar one, and then I would likely become suicidal again. And so I was really fed misinformation. And so if we didn't have so much misinformation out there, I don't think it would be a problem. And to your point, the autism community that diagnosis is incredibly powerful for them. It bolsters them, It brings them together, and they rally together, and they very much identify with it and are very proud of it. So I don't see a problem. You know, that's an example where it's really working. On the other hand, what we have is a lot of people identifying with diagnoses who don't know all the facts about them, and whose children are getting these diagnoses, and teenagers are getting these diagnoses, who could, like me, then go through life and see life through a lens of diagnosis. So when I started, you know, my editor asked me, you know, why didn't you question these diagnoses, like after four or five, And I said, because I just never thought to question them, for one thing. We tend not to question our doctors for another. And then also I just was used to getting diagnoses. I was just used to them changing. I thought this we were getting to the bottom of something, right. But to your point to just that we can talk about mental health without talking about diagnoses. Going back to the parable, I could not manage my emotions. I could not process them. I couldn't have told you what happiness felt like, or joy, or depression or anxiety. Those physical sensations in my body just overtook me, and my thoughts just were running a million miles a moment. And so I remember being I was in a partial hospitalization program and we were all sitting in a room for group therapy, and they gave us the motion wheel, you know, the colored motion wheel that you have with all those emotions, and there were must have been a hundred and I thought, oh my god, I don't even know too I can tell you what to feel like in my body. So I think we can really move towards teaching our children and teenagers and ourselves. How do you process emotion? How do you identify emotion? Yeah? Yeah, I think the thing with diagnosis, that's interesting because diagnosis of alcoholic or addict I think in a lot of ways saved my life, and then that complete identification with it is what caused me to sort of move out and away from twelve step programs. In the beginning, it felt incredibly liberating to be like, oh, I know what this is. Other people are sharing some or stories. Oh my goodness, there's a path. But after a while there's something in twelve step culture which is this idea that, like, there's an alcoholic personality. You know that ten years sober, you're still sick. You know. After a while, this constant sort of delineating between what we were like and what normal people were like. And I was like, I know a lot of normal people, and I don't think we're that different. Yeah, I get sad, they get sad, I get envious, they get envy, Like we have these common emotions. And so for me, ultimately then I sort of went, well, that diagnosis, that identity that I am an alcoholic, it's not that I shed that. I don't even know what I would call it. What I know is drinking is probably a very bad idea for me. That's sort of it, you know. And I always get tripped up on words like, you know, am I an alcoholic or was I an alcoholic? Or And I ultimately don't think it matters. But I didn't want that to be one of my primary identities, you know. And I find identity fascinating because it can be a very liberating thing to have an identity. We can talk about people who make an identity switch, who go, you know what, I've just know I'm not the kind of person who smokes, and that helps them not smoke, So they are identifying as a non smoker. Helpful, right, But we can also as you were doing. You can identify now as an anorexic, and you start learning about what anorexics do, and without knowing it, you're subtly starting to mimic exactly. And for me it didn't help ever, because I definitely got worse with each diagnosis um And I think that if I identified with it again, knowing the truth about them, with a little bit of skepticism, just going in and not thinking, okay, these are permanent, this is actually something I need to identify with to get well. And I had the option to choose, I might have done everything the same. I don't know. But what's interesting to me too is I absolutely identify as someone with a mental illness, and I say, you know, I either had or have because we don't know if they're chronic. I don't believe that they are. I believe and other psychiatrists have said, I'm fully recovered. It's not recovery. I'm not always going to be I'm fully recovered, and if I'm wrong, I'm wrong, and I'm okay with that. But where it's helpful to have some identity attached to mental illness, for me, one is I don't want people to be ashamed, and I want to be an example of being very I'm very proud that I survived what I survived and what I talked about in the book. So I definitely don't want to, as you say, shed that identity necessarily. The other thing to your point about not drinking is that I live a very structured life. I did not become normal and now I can go party, you know. I mean, I go to bed at the same time, I wake up at the same time. I don't drink, I don't smoke, I don't do drugs. You know. I know that I have fragile kind of maybe may not be the right word, but I have a fragile system, and I have a very very strong but also uh you know, sort of again fragile mind, and I have to take care of myself and that's okay with me. Yep, yep, yeah. I think it's so interesting to go, all right, well, I have a mental illness because I'm not functioning well and yet to go like well, you know, like in your case, well, okay, what is it? Is it anorexia? Is it major depressive disorders? It anxiety? Is it a d h D? To be able to go? I don't know. The exact word doesn't matter. What I do know is that I figured out through medicine, through lifestyle changes, through working with my mind, learning to use emotions differently. I figured out how to work with this in a way that I am functional now. And those three words I don't know are so powerful, and that's what saved my life. I was and this is the kind of awakening moment in my book, which is that I was suicidal. I had run out of medication. My psychiatrist, who was also my therapist at the time, he and I had had a falling out. He wouldn't renew my prescription because I told him I wanted to see someone else. I didn't have a psychiatrist, and my sister found one for me, and I went to see him and we had our twenty seven minute session, and I waited at the end of it for him to christen me some either the same diagnosis by polar one or a new diagnosis. And he looked at me and he said, I don't know what you have. And my life changed and it was just I thought, no one knows what I have. And that's when I started really as a journalist, investigating all of this and trying to find out the truth. Yeah, let's talk about medicine for a second, because you are on meds that help you. I am on meds for depression that have helped me. You say that there's two movements. One is the sort of common movement, which is like, you know, you show up at your doctor, you get given a medicine. And then there's another movement that says, hey, that's all wrong, like you shouldn't be taking medicine. That's very anti medicine. And I find again both extreme, sort of problematic. So talk to me a little bit about, you know, how you view all of that. Yeah, it's such an interesting aspect of all of this. When I was antorectic when I was twelve, they weren't prescribing to antorectics at the time. So I did not go on psychotropic drugs until I was in my thirties, so I was very late coming to it given the number of diagnoses that I received, and I was completely against it. I did not want to take medication. I was someone who wouldn't take aspirin, So I was very anti mainly because I'm very sensitive to drugs, and so I just thought, what is going to happen? But I believed a lot of the sort of mythology that my personality was going to change or something like that. But I became so desperate as many people do, that I ended up going on an S s R I and an antidepressant, and so now I'm on a cocktail of several drugs. I don't know if I'm on them because my body is dependent on them, or if they are working for me. I tried to go off, and my withdrawal was absolutely awful. I mean, I was prescribed many many drugs and including antipsychotics and and everything, but trying to go off my antidepressant was beyond brutal. And I will never try again. It's just not worth it. And so that's another thing that I talked about in my book, which is that they never tested ss R eyes or antidepressants in terms of withdrawal. You know, initially they did. They were meant to be on for three to six months, not ten years, and I've now been on them for twelve years. So, as you were saying, the other camp is medication is bad and the withdrawal community, which I think I have a lot of probably too much judgment about, but they were very instrumental in me feeling like I should go off medication and that medication is bad and I can do it myself, and that's very destructive. It was so dangerous and I do not recommend anyone even try it without medical supervision. It's just and find a doctor who will do it with you. But it's dangerous. So but that withdrawal community I think is missing the mark. Pell shaming isn't helping anyone. This has gotten so confused and we didn't know and we got diagnoses and we went on medication, and now we don't know if we can go off. So yeah, yeah, yeah, my story is very similar. I was put on antidepressants in I don't know, maybe early thirties and have been on them more or less since, which is twenty plus years. I have made a few attempts at points to go off of them. Some were very well planned and others were very poorly planned. But the most recent one was not that long ago. I'm going to guess I don't know, three years maybe, And I did it incredibly slowly, like six months, kind of slowly, like taper, incredibly slow. And I didn't have withdrawal. I got off of them and it wasn't like I felt awful. But over time, the best way I know how to describe it is, I just started feeling like I increasingly was carrying a heavier and heavier weight, like everything just increasingly got more difficult because nothing has changed in what I'm doing. I'm taking care of myself in the same way. I'm doing all the things I know that I've done that treat my depression, and it seems to be back. And then I would go back on the meds, and I'm like, what cheez. All of a sudden, I feel like a normal person again. I feel like myself again, and like you, I don't know, is that because I've been on them so long that my body has simply adapted, or you know, is it that I actually need them? And I'm at the point where I'm like, you know, at this juncture, it doesn't seem to matter. The side effect profile for me is so low. They don't bother me. They caused me no problem, and it does seem that I function at a higher level. And so that's kind of where I've landed with them for now, is and I'm on very low dose ss r S. I'm on a fraction of the dose I used to be on. But and I don't know whether in the future I'll be like, well, let me try it again. But at this point I feel pretty at peace with like this is what works for me. I am too, and I'm I'm on relatively high levels. And a psychiatrist assures me that they aren't dangerous and that I can be on them for the rest of my life without a problem. Of course he doesn't know that, and no one exactly. I don't have a I don't have a problem with it. And in the sense that this is what happened for whatever reason, and again, you know, if this is part of my journey through mental illness, and that I don't have one anymore, and I still need to exercise and I still need to eat right and sleep and take my meds. Yes, and plus we don't know how they work. And that's the slightly alarm and part of it is we don't know how they work. But yeah, like you, I just always refer to as I like, I sort of throw the kitchen sink at it, right, Like, meds are part of it, as is exercise and eating well and sleeping well and talking to people I care about and doing things that matter, and like, you know, there's a whole approach that works. But to be in a place where I would say I am functioning at a pretty high level, I'm generally, you know, a pretty content and happy person, I'm like, let's just not rock the boat. Let's just go thank you, thank you. You know, all right, I'm happy to be here. You know, let's carry on. And we're dealing with the repercussions or we're still feeling the repercussions of psychiatry's move to a biomedical model and not approaching it in a way that said, Okay, we have to take a holistic view of this, and yes, you might want to take you know, use medication, you may not, or if you do use medication, let's talk about these things as well, and let's talk about the side effects and that you may not ever be able to go off of it. I mean, I was so desperate at the time that if someone had told me all the facts and he still have taken it, Yep, yeah, me too. I Mean when I first went on, I, like you, was like, I don't want to do it. I was relatively newly sober. The idea of getting on a drug did not feel right, and I was like, Okay, I'm gonna do everything that I hear about that could possibly help. That isn't drugs, right, And if I do all that and I still feel this bad, I'm going to wave the white flag. And that's exactly what happened. I was like, I'm exercising right, I'm eating right, I'm sleeping, I'm going to five meetings a week, I'm taking St. John's War. I mean, I've tried it all and I'm still suffering, you know. And again, I think that's always the approach that I think is wise, Like start with the minimum intervention you can do, and you know, okay, try exercising. It might do it right, It might do it. Then you end up at a point where you're like, all right, nothing else is working. Okay, why suffer? Why suffer needlessly? You know, if there's a way they can help. But but again, as we said earlier, I think what we've gotten to culturally is we start with a medical intervention. That's the starting place for a lot of people, and we start with a diagnosis first. So I think sometimes our conversation, the reason why it goes to pill shaming and big pharma is bad, which you know that's a deserved reputation that they have, is that we're skipping the real problem, which is that d s M diagnoses are too easy to receive and are being given out too easily. And if we can start there and going at the d s M like I attack a book, not anyone in particular, because I think we're all in this together, and it's it's kind of a mess right now. On a personal level, you've sort of described what we as people can do, and we're giving a diagnosis. You know, we can question it, we can ask more questions, we can do all that. How do we reform something like the d s M. I mean, I don't know whether you could argue it's better than nothing, but it's something certainly our health care system is modeled around like you need a diagnosis in order to get care, to get your insurance to pay for I mean, there's this thing is so pretty quickly and deeply entrenched. So where forward, I think there are answers, and I think what tends to happen is this idea that you need a diagnosis to get care. That's true absolutely. At the same time, fewer and fewer clinicians are taking insurance, so that's happening at the same time. And so I do believe that the d s M is not going to be reformed anytime soon. And the reason for that is that the latest full text revision is coming out in March, and they have only added one diagnosis, made pretty much text level changes, and have done nothing to rectify the mistakes of the past. So I think it's really the onus is on us. We need to create the change. We've been waiting for psychiatry to do it, and it's not happening. So the reason why I wrote this book and why I want this book to be out there and read by as many people as possible, and for the Pathological the movement, which I started a public awareness campaign to bring that all of this to light is because if we know, if we patients and the parents of patients know the truth, the mental health system will change, and it will change for the better. Clinicians will suddenly be put on the spot. They'll have to tell the truth. And you know, I think that there is a lack of transparency. I would like to think no one is intentionally lying. There are some, but those are you know, those are just the bad apples, and I think that for the most part, everyone has good intentions in trying to give care as best they can. One other defense of the d s M or you know, clinical practice and mental health professionals is that the d s M is really flawed and I don't even use it, and that scares me more than anything because then that means literally you are getting a random diagnosis based solely on someone's a in But they use it as a defense, as if to say, see, I'm better than this. But very few clinicians are trained to do something like that, And how can you partially use the diagnoses but not really. What's also interesting is when mental health diagnoses started to come into play, they were to be used by doctors, so it was a way for doctors to communicate, and this is something my psychiatrist and I were talking about. They were never meant for patients, and they were never meant even for patients to know what they had. And so I have a diagnosis. My psychiatrist has changed it three times since I started seeing him. I don't know what it is. I don't want to know. And it's that same idea that he uses it. Our doctors may use it, but you know, we're identifying with them in a way that they were never meant to be used. Let's change gears a little bit, and I want to talk about a recent article you wrote about what our emotions. Actually, that wasn't the title that. I think the title is more about who invented emotions. I'm less interested in the history of it than I am in talking about, like, what the heck are they? I never knew. If someone had asked me in my twenties, my thirties, my early forties, what is an emotion? I could never have told you. And finally I learned they are vibrations in our bodies. And when someone told me that, I thought, really, that's so wild. And so the question is, do you think that emotions are responses to thoughts or thoughts are responses to emotions. Personally, I think we have a thought first, because, as I say, evolutionary psychiatry has been very helpful to me that I have a primitive brain that is constantly trying to protect me and saying warning, warning, warning about everything when there is not deadly danger for the most part, and then I have a rational brain. But for the most part, the emotions that I'm having in my body are responses to my primitive brains firing off of thoughts. However, many supposedly we have six thousands, some say sixty, but I've heard it's really only six thousand in a day, and that is all emotions are, Yet we fear them. I'm terrified of anxiety. It's just a vibration in my body. It's a vibration in my chest. It doesn't make me fear it any less. But now what I've learned to do is to sit with it. And I'm not a meditator in the sense that meditation can have adverse reactions, particularly for people who are not mentally stable, and that has been my experience with meditation. But to try to feel the emotions in my body I'm able to do that. I can be directed and have success with something like that of being present. I mean, what are emotions to you? How do you think of them? Well, it's interesting because you get into what's an emotion, what is a feeling? You know, what is a thought? And I've been toying with the notion that thoughts and emotions maybe aren't as separate as we try and label them as, because you don't seem to get one without the other. We're trying to break it apart. But my experiences they co arise. You know, which comes first. I don't know. I'm a believer. It's actually it can be both ways. I certainly know, like I could have a thought like, oh, my partner doesn't love me, and suddenly I feel lousy. We all understand that direction. But there are days that I wake up and I feel lousy, and it feels like all my thoughts get filtered through the lousy lens. And so it seems to me that it's bidirectional, which then led me to go, well are they separate? So I've been thinking along the lines of one of our spiritual habits intensive we've been talking about it. I've been using the label emotional storm and saying that it's actually a bunch of things arise. There's that, Yes, you have thoughts, you have bodily sensations, you have what we would label as a feeling sad angry. Almost always there's some urge to do something, and those things all co arise. And if we can be as you said a little bit more like, all right, they feel overwhelming when they're all put together, but if I can sort of tweez those things apart a little bit, it starts to feel a little bit easier to work with. So that's kind of my thought. I love that, and I think for someone like me, I do need to sort of not pick them apart in a negative way, but part them and to see, Okay, there are circumstances. There's a situation, an event, something, and it's neutral, it's just neutral, and then I have a thought about it, and then I have an emotion, and those could be simultaneous. I mean, I agree that they could go back and forth, and that we're just so instinctual that things are happening like that, and then there's an action that I take and then there's a result, and so this is you know, not something I came up with. But you know, it's a very basic way of seeing the world and our mental and emotional lives, and it just makes sense to me, and it helped me slow things down a little bit. Yeah, I'm really intrigued by a question that I've been asking, you know, people I have on the show about which is It seems there are broadly sort of two ways of working with difficult thought slash emotion. And I'm oversimplifying, but one is it's very cognitive behavioral therapy. It's right, let me go in and let me look at the validity. Is it true? Is it? You know? Is it always that way? Am I seeing black and white thinking? I try and sort of get in there and wrestle with the thing a little bit, right. The other approach seems to be just step back and let it be. It's more the mindfulness bay acceptance and commitment therapy. You know, you start pulling on one thread and you know, you're wrestling with a yarn ball. And what I think is interesting is I actually think they're both very useful ways to approach it. The question I'm really interested in is when is one more effective than the other, And how would you know I guess maybe it's just you try, you know. I think having both of them and our tool kid is helpful. But I do sort of see that split. I see it in Buddhism. I can see like a certain threads of Buddhism that are like, you know, wholesome, unwholesome thoughts go in, pull the weeds out, you know, and other aspects of Buddhism that are like just step back, let it be. I see cognitive behavioral therapy versus acceptance and commitment therapy. I sort of see that split there. So that's kind of what I've been thinking about with that stuff lately. That's been really interesting me. I've tried all of that. So with my partial hospitalizations and all of that, I did CBT act all of them and um DBT and but I also for that, like you, I tried to meditate it out of me. I meditate it down and yoga it down. And I mean I did ashtanga for twenty years, and I you know, studied with Dinat Han and I studied with Byron Katie. And those are the two sides of the coin that you're really talking about. Byron Katie is all about questioning your thoughts that diknat Han is really more about like letting them go by. And I think in answer to your question, I kind of think or one way and I'm not good at this, but as you were talking that it's better to watch them go by and step back when you can't affect the result, when you really have no control over the situation. And if you can ask can I really even do anything about this, then let it go and step back? But if you can, then maybe it's worth going in and poking around and seeing what am I thinking and what's the result I'm producing, what's the result I want to produce? Yeah, I often say I think that the serenity prayer is one of the sort of like most foundational things to you know, finding emotional mental wellness. Can I do something or not? And it sounds like it's easy, but it's not. That's the hard part is like when when we talk about it, we're like, well, you know, I can't control the weather, and uh, I can control weather. I brush my teeth right, Yeah, those are obvious ones. That life is far more complex, which is why the serenity prayer says, and you know, please, I could really use the wisdom to know the difference, because that's what it takes. It takes discernment and wisdom to know the difference. But I agree with you. I think that's so foundational, and I think it's a little bit addictive almost to try to change things you have no impact on. I mean, I will just spin on it and and just try and and the less effect I can have, the more I tend to ruminate about it and try to have an effect. So it's almost like a I don't know, it's like a dog with a bone or something, and you just want to go at it and add it and add it. Some of it I think depends on your personality type, right, Like there are people who are that way. They're very tenacious, like I'm going to hang onto it forever. I think I fall a little bit more into the other category, which is like effort, like which is not exactly helpful either. When there's situations that you probably should do something about, you know, I probably shouldn't just say, well, you know, I'm going to have a tax bill this Year's nothing I can do about that, Like I need to engage, you know. So I think knowing where you fall can really be helpful with that I think you just nailed the two sides of the spectrum. I'm talking about Byron Katie on one and Tick not Han on the other. Would you say that you find both those tools useful at different times? So I studied Byron Katie for about five years. I went to her school, I worked at her school. I mean I was deep into the work and with Tick not Han, i studied him. I also had the amazing opportunity to interview him. It was incredible. Both came into my life at different times. And again, I'm not sure I write about other people in my book as well, because I wasn't the only one going through this. Meaning one young man I interviewed he was diagnosed with schizophrenia and he did transcendental meditation. It exacerbated his symptoms and he ended up stabbing another student at the college he was at and the student died. Um. So you know, meditation isn't always good for everyone. We tend to prescribe it as a pass as you know, just this innocuous thing. It was very detrimental to me and both types of meditation. So you know, Katie's work is very much a meditative practice of questioning. But someone with a loose hold on reality. I don't mean to make myself sound like that, but even now, you know, I don't write fiction anymore because I'm just I'm lucky I'm here and I need to imagine another world. But but with Katie, if you're always questioning your thoughts and you don't know where to stop, you're gonna end up in a very very dark place, which is where I would or just questioning all reality. I remember I was doing the work so much during the day that I thought I could see through my body, you know. It was not good for my mind. And then to meditate. I would love to be the kind of person who can meditate in the tick, not Han style or you know, zen or anything like that. My thoughts have always been too powerful, and I don't want to give them that much power. But I am that that that kind of no direction at all. It's not something that I want to try to do anymore. I tried for years and years and years. I mean, Eckert totally. I tried to feel my inner body lying on the floor of my living room, and it gave me panic attacks. Yeah, I think that's really interesting. You did write your article about interviewing tickno Han, and now he's one of those people I would have loved to have talked to. And you described in the article you're kind of saying what you're saying now, which is like, hey, meditation can not always the right thing. It's got lots of challenges. And yet when you met tick Han, you basically said, like, the guy was blowing. Oh he was incredible, And I was not mentally in a place. I mean, this was I. I did all of this during the thirty years that I was in the mental health system, and I wish I had been where I am now to meet him and to be able to take more advantage of it. But he was incredible and just as as you said, he glowed. And it's such a cliche. I mean, he floated into the room and he just seemed to have this piece about him. And he looked so young. I mean, he was easily in his eighties and he looked sixty maybe, And of course I would love to have that kind of piece. I also respect him so much because of engaged Buddhism that he doesn't you know, he does believe in really engaging in social justice, and certainly he his last book which is also with my publisher, and and just on climate change and how we all have to engage. And I feel the same about mental health. We have to change the mental health system. It's not going to change. I think your article in these talks about meditation are interesting because Buddhism points to this disillusion of self as ultimate liberation, and you're describing that for some people is not a liberating experience but an absolutely terrifying experience. And a lot of spiritual teachers will say, of course you're afraid, but you go through that and on the other side is peace. But you're saying, on the other side of that, for some people a psychosis. You know, it's called the Dark Night, and there is actually an organization started by a woman I'm I'm forgetting her name now, but where she's collecting experiences of people for whom meditation has either you know, sparked psychosis or sent them into such a dark place that they felt they might never come out of it. And again, it's just that we tell ourselves and in the cultural conversation, meditation is good. It's good for everyone. I thought there was something wrong with me that I couldn't do it, or that I was just not trying hard enough. And I only later found out about people like Shooty for whom transcendental meditation. You know, it's it's set off his already fragile mind, or again fragile. I don't like that word, but you know what I'm saying that that you know a mind that you can't question reality. I believe if you aren't in a place that's somewhat mentally healthy. Yeah, it's kind of like saying, run a marathon when you haven't run in twenty years. Yeah, that's not going to go well. It makes me think a little bit. I mean, this is going in a direction we don't have time to go in. Which is the next mental health craz is psychedelics. You know, talk about an area that is fraught for people who have mental illness, right, because we're saying, on one hand, it helps mental illness, it can help with depression, it can help with My experience with psychedelics has been very much what you said. When I'm in an okay place. You know, in the past, they were very powerful and illuminating things. When I was in a dark place, it was terror. My stupid brother convinced me on the night of my grandmother's funeral. This is a long time ago, right, We're talking thirty years ago, on the night of my grandmother's funeral to take I don't know whether he took mushrooms or lst. I don't know which it was, but I knew it was a bad idea. I knew it, and he convinced me the entire night. My recollection is him outside the window laughing like to me, which sounded like the devil, and me laying on a bed feeling like I was being crucified for eight hours like I mean, it was truly a horror experience. And so I think to your point, this idea of question in reality, which can be a really powerful thing to do. I'm very focused on that as my own spiritual practice, but I'm coming to it from what feels like a place of strength, you know. I do see how it could be truly terrifying to just nothing has any meaning. Oh, okay that depending on where you are, that's either like, oh, that's really profound and could really be liberating, or I mean, we're not all Byron Katie. We're not all going to sit around and have the world come to us to want us to have us help them question their thoughts. But I try to be open to all mental health treatments because again, I think we're just in a place where whatever works for you, it's worth trying. At the same time, I agree, I think that psychedelics and marijuana as as some sort of answer to this, just because I know someone who had a psychotic break from marijuana and he is still told that he has bipolar and he's convinced, no, I don't, it was just from smoking pot that that happened. So I worry too, I really do. And then the other part of this is my understanding is the Buddha never meant for lay people to meditate. It was strictly monks only. And so then you're in a protected space. You're in the monastery, you don't use money, you don't you know, you aren't having sex. You are in society, and so you are able to question reality in a way that is protected. And so unless I have that protection, I'm going to just be l a person. Well, there is there's certainly some wisdom in that, but I think what you just said a couple of minutes ago is probably ultimately the most important thing to me, which is you've got to find what works for you. What I think is so important also is if you're struggling with mental illness, like I think it's just so important to say, like, don't give up. You may not have found what works for you yet, but you might, you know you might, and so carry on. You know. In a A we say keep coming back. And I think that's so important because all we're saying is like you may not get this the first time, right, but you're welcome, come on, keep trying, keep trying, you know. Now, I think the thing we should be saying is sometimes you need to try something other than a instead of just keep coming back here. You may need to go somewhere else, but the spirit of hey, I'm going to keep looking for an answer, I think is so important. Absolutely, And I mean it took me six diagnoses, so you know, keep trying, and I did almost in my life. I don't want anyone to have to go through that. You know. One thing I was very careful about in my book is not to attack psychiatry because that leaves people without hope. And I had one particular, very dangerous psychiatrist. I had some irresponsible primary care physicians, but I had one that was extremely well intended who gave me three of my diagnoses. But he was very well intended. And I had a psychiatrist who helped me save my own life. So there's just going to be a lot out there, and I think we need to start, you know, again with the d s M and the pages where these diagnoses are coming from. Yeah, so we'll have links in the show notes, but tell people about the movement that you're working on and the three questions people can ask themselves about diagnosis where do they find that? And again links will be in the show notes, but I'll let you just give it to everybody here. So it's www. Dot pathological dot us, and it is Pathological the Movement. And I realized that in my book, I really, you know, use my experience because I think it's one that many many people have shared or their loved ones have shared, and then give them all the information I wish I had sort of wrapped into it, but that I hadn't given really clear action steps for people because it's a memoir and it's really, you know, a narrative and supposed to be that. So I started Pathological to movement and the three questions are is my diagnosis valid and or reliable. And the answer to the first is no, definitively, And the answer to the second is it depends um. And then the second question, which is so important, is it has my diagnosis been proven to be chronic? You know? No? And then the third question, what does that mean in terms of me, my diagnosis and the treatment you're suggesting and that I hope will open up, you know, a different conversation. At the same time, when I was going through what I was going through, I could not have asked those questions. There's just no way. But if I had been thinking about them, That's really what I want from the movement is just to have us thinking about them, because then we're going in eyes wide open, and I think that's what's important, is to have eyes as wide open as you can, as much information as you can. And yes, sometimes we crawl across the door to to get help and we just take what we can get. But I do think this is a very important conversation. And the thing you said earlier that resonated and then I do need to wrap up, was really thinking about talking with your person who's helping you about an exit strategy, you know, like how are we monitoring this, How are we going to determine whether I should keep doing it? What's this look like longer term? So that people don't necessarily end up in a place where you and I are where we're going, Well, I don't know if I really need them or if my body is just depended on it. Over twenty years of doing this, again, you and I are in good places. I'm not saying like you could be in a far worse place, but I do think would have liked to have had that conversation at year two or year one or year three instead of your twenty Especially in medications, some medications, not all, but you know, antidepressants have have a pretty productive profile when you're taking them for three to six months and then going off of them and you're not having the same dangers. And again, the other issue that comes up so much in terms of dysfunction is how long are your symptoms lasting? And at what point does it become too long? Because intermittent depression is actually a part of the human experience, right, Yes, Well, why don't you and I stick around in the post show conversation for a couple of minutes, because I'd love to talk about that because I think, you know, wrestling with Do I have depression or do I just have a normal, melancholy kind of temperament is a really interesting question. So listeners, you can get access to the post show conversation, ad free episodes, all kinds of other good stuff at when you Feed dot Net slash Join Sarah, Thanks so much for coming on. I absolutely loved reading the book. I've loved this conversation. I think it's a really important thing to get out in the world, and I'm glad you're doing it. Thank you so much for having me. It's such a privilege. If what you just heard was helpful to you, please consider making a monthly donation to support the One You Feed podcast. When you join our membership community. 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