The Impact the DSM Has Had On All of Us: An interview with Sarah Fay and Allan Horwitz

In this interview, MIA speaks with Allan Horwitz and Sarah Fay about the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) and its impact on our society and our personal lives.

Allan Horwitz is an Emeritus Professor of Sociology at Rutgers University. He is the author or co-author of 11 books, a number of which have focused on the DSM and how the successive iterations of that manual have shaped societal thinking about mental disorders. His most recent book is DSM: A History of Psychiatry’s Bible.

Sarah Fay is a writer whose essays and articles have been published in the New York Times, the Atlantic and numerous other national publications. Her memoir, Pathological: The True Story of Six Misdiagnoses was published in March. She is also the founder of Pathological: The Movement, a public awareness campaign “devoted to making people aware of the unreliability and invalidity of DSM diagnoses, and the dangers of identifying with an unproven mental illness.”

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

Robert Whitaker: Allan, I’m going to start with you. You’re a sociologist. Why did you become so interested in the DSM?

Allan Horwitz: I entered the field of mental illness in the early 1970s, when I was a graduate student in Sociology at Yale University. As it happened, the DSM was being developed at Yale at the time. I did my dissertation at the Connecticut Mental Health Center and this was the age before patient confidentiality. I had free access to the charts of people, which in retrospect, seems amazing to me. These charts didn’t have diagnoses, and they would go in detail into the problems that people were having. Diagnoses just weren’t an important aspect of how patients were being looked at and how they were being treated.

Whitaker: This is happening before DSM-III was published.

Horwitz: Correct. Then all of a sudden, in 1980, when the DSM-III is published, not only are diagnoses a critical part of psychiatry, they’re probably the most critical aspect. [Psychiatrists] start by getting a diagnosis for the person, and then that diagnosis guides how that person is treated, what kind of drugs they’re getting, what sort of psychotherapy they’re getting. It was such a tremendous transformation in a very short period of time, and it’s going from diagnosis playing almost no role to it being the central aspect of psychiatric treatment.

Whitaker: Before DSM-III, the patient records told of individuals with an individual life story. There’s an intimacy and a response to that individualization, is that correct?

Horwitz: Yes. At that time, it was what I would call a psychosocial view of patients, of people with particular life histories, who were confronting particular kinds of life situations. In a sense, each patient had a different set of circumstances. But it turned out to be a real problem for psychiatry because how then can you form a reliable and generalizable diagnostic system like you have in other areas of medicine? If psychiatry is going to be a respected branch of medicine, they need a standardized diagnostic system.

Whitaker: What were the motives present in the 1970s that led the American Psychiatric Association to make this big transformation? What was behind the creation of DSM-III?

Horwitz: Within psychiatry, I think the most important was that the mainstream of the profession in the 1950s and 1960s was clearly psychoanalysis, and psychoanalysts couldn’t care less about diagnoses. It just wasn’t important if you were looking for the hidden unconscious factors that shaped who a person was. Then, beginning in the 1950s and intensifying in the 1960s, you have an entirely different type of psychiatry emerging, which is called biological psychiatry, and these were hardcore researchers who generally didn’t really see patients. But they were devoted to developing specifically targeted drugs, especially focused on depression.

The analysts had this very global notion of anxiety, which drove their work, so the new biological researchers ceded anxiety to the analysts. They weren’t going to go there and instead took depression as their stronghold and strived to develop very targeted drugs.

Whitaker: As though the drugs were an antidote to those conditions.

Horwitz: Precisely, and another aspect of their thinking was they weren’t concerned with experience. The analysts might want to deal with how people thought, what kinds of life events they were undergoing, but the biological psychiatrists just couldn’t care less about that. They were very interested in the brain, and this was a period when the discovery of DNA in 1952 transformed biology and a lot of thinking about human behavior. They didn’t care about people. They cared about brains. This is a very, very different way of thinking.

Whitaker: One thing I would like you to expand upon—and you wrote about this in your book The Loss of Sadness—is the historical understanding of depression.

Horwitz: Major Depressive Disorder, MDD, turned out to be the central diagnosis in DSM-III. It’s a terrible diagnosis from any scientific point of view, and it took until really the 21^st century before researchers were able to admit it. But the reason it’s so bad is that you need to have five of eight symptoms to qualify for the diagnosis and you only need to have them for a two-week period. So anyone who for two weeks has been feeling down, who had a loss of appetite, has trouble sleeping, which is basically a normal reaction to any kind of loss event, can easily qualify for a diagnosis of major depression.

On the other side and this is what had been true since ancient times, depression had been one of the only diagnoses that had always been recognized as a very serious mental health problem, where people have suicidal thoughts, where they find that nothing in life is worthwhile.

Whitaker: That’s often present in hospitalized depression, right?

Horwitz: Yes, and why this such a good thing for psychiatry is now you have population surveys being show huge proportions of the population are suffering from depression. Well of course they are, because it’s a natural reaction. It’s the common cold of psychiatry.

Meanwhile, and this is happening simultaneously, the drug industry came out with a whole new class of what come to be called antidepressants, even though they’re not really antidepressants, but they have to be called that because the anti-anxiety drugs that were wildly popular in the 1950s and 1960s became discredited in the 1970s and there was this movement to strictly regulate the tranquilizers. So they don’t want to call the new selective serotonin reuptake inhibitors anti-anxiety drugs. Instead, they hit upon calling them—and it’s a brilliant marketing tactic—antidepressants.

At the same time, in the late ’80s, pharmaceutical companies are able to develop direct-to-consumer advertisements, and they spend tens of millions of dollars promoting these drugs, clearly aiming at the normal depressions that stem from everyday problems. You don’t see in these advertisements seriously depressed suicidal people who are in the hospital. You find the wives who are squabbling with husbands or having trouble raising their children. They’re targeted at everyday problems, and they are hugely successful.

Whitaker: That the funny thing about the television ads. It’s never about someone in a hospital bed. It’s like you take the drug and pretty soon you’ll be walking on a beach with a beautiful person. Life’s going to be good.

Horwitz: Better than normal.

Whitaker: Of course, we also get the chemical imbalance to market these drugs. How does this fit into this diagnostic expansion?

Horwitz: The chemical imbalance theory was initially developed in the 1960s before DSM-III. Interestingly, depression was initially linked to epinephrine and not serotonin. It was very popular for a relatively short period of time with researchers. Now virtually nobody accepts that except for the drug companies, which find it a convenient way to link what their products do to the brain, even though there’s really no evidence that a chemical imbalance is the cause of the problems that people are suffering from.

Whitaker: But, of course, people were being encouraged to say your problems are due to this chemical imbalance as opposed to what’s going on in your life. That’s such a profound shift in self-understanding.

Horwitz: You’re not going to sell many drugs by saying your problem is your life experiences. It’s far more effective to say your problem is in the brain. It’s an imbalance, we can correct that imbalance, just take our product.

Whitaker: That’s a great overview of how we moved from one way of thinking into another way. Sarah, you grew up as a teenager in this new DSM-III world. Tell us about your first diagnosis and how it came about.

Sarah Fay: I was diagnosed with anorexia when I was 12, and it’s so interesting to hear Allan talk and to give this overview because, as you said, I see myself in it and I say in my book that I’m such a product of the DSM. At the time, my parents were divorcing and I was going to a new high school. So thinking of that context, I was incredibly sad that my parents were divorcing and did not have a language for it, and going to a new high school, I was terrified, beyond terrified.

At that time, I didn’t even know what emotions were. I only found out last year, actually. Emotion are vibrations in your body. They are sensations in your body. I didn’t know that and I had a terrible dark pit in my stomach all the time, and it made me so sick. I didn’t want to eat and there was good reason for why I wasn’t eating. I mean, I was not weighing myself; I was not staring at myself in the mirror. I was not reading fashion magazines. I had no pressure on me to be thin. I was not going to be a prima ballerina. I didn’t want to be a model, nothing like that. But I had these very understandable life situations that were going on that if someone had just looked at that first, as Allan said, I may not have gotten the diagnosis.

What happened then was that I went on a class trip, and I didn’t eat the whole time. We were gone for about four days and in a 12-year-old body that’s pretty hard, and so when I tried to eat, I threw up the food. I tried to drink water. I couldn’t hold that down. When we returned from the class trip, my mother took me to the hospital. It was Children’s Memorial Hospital, and I don’t know how long we were there, but my primary care physician saw me, weighed me, and  my mother said she hasn’t been eating and I had anorexia, and so that was the first conversation I even had about it. My mother hadn’t talked to me yet about not eating.

I didn’t just get a diagnosis, I got a full explanation for everything that was going on, and I believed it.

Nothing really would have been that bad or gone awry if, one, I hadn’t heard the diagnosis, or two, then started to learn about it. I read a book,  Steven Levenkron’s The Best Little Girl in the World. It’s about a girl named Casey and just like many eating disorder memoirs, it’s really a cheat sheet on how to be an anorexic and I learned how to do it, and I became one. It really became my identity, and I started to cut my food up in a certain way, and I started to move food around on my plate and stuff it in the cuffs of my pants. Eventually, I entered an outpatient treatment program and that was even worse, because now it’s really serious. Now, everything’s really wrong and it’s all because of this word anorexia.

Whitaker: So instead of being understood that you have these things going on in your life that can be very problematic for a child, you were told the problem was within you. And it seems that you began adopting behaviors to prove to yourself that you had anorexia.

Fay: No, no, it wasn’t that I was faking. It was absolutely in keeping with what I was experiencing in my body, with a stomachache and not wanting to eat. And it was very much in keeping with the weight I was losing. I mean, my weight was dangerously low, but it really became extreme once I started being an anorexic and thinking of myself that way. And  because I was so young, that’s when you are figuring out your identity, that’s when you are trying on different identities. That’s what worries me and one of the reasons I wrote the book. I teach at Northwestern and I see it in my students all the time, that they are identifying so strongly with the diagnoses they’ve been given, and it’s at that time when you’re just trying things on and you’re so vulnerable.

Whitaker: This goes back to what Allan said. When I was growing up in the 1960s, you just didn’t have people being presented with this possible identity. There were bullies, goof offs, screw ups, that sort of thing, but you weren’t presented with the opportunity to become a mental patient at age 12. But you are now introduced into an identity that’s going to carry forward with you for decades.

Fay: Exactly, and I think it’s really important to note that my primary care physician gave me the diagnosis. We often talk about psychiatrists, but five of my six diagnoses came from primary care physicians whom I saw for about 15 minutes once a year. If you have a man in a white coat with a stethoscope giving you a diagnosis, why would you ever question its scientific validity, its medical soundness or its reliability?

Whitaker: As this happens, what are you saying to yourself? First, you have anorexia, but now you have depression. Are you saying that the depression was undiagnosed before?

Fay: This is the late 90s. Diagnoses were not talked about in the public discourse the way they are now. When I was receiving these diagnoses, they were pretty new to me. I didn’t have people I could talk to about it, but what had happened was with the anorexia diagnosis, I already saw life through a lens of diagnosis.

When there’s a problem, you look for the solution and the solution is a diagnosis, right? When I was told that I had major depressive disorder, I was grieving very seriously. It just happened to be for my cat of 16 years, but it was very difficult for me, and I grieved for about two years and was over-exercising. I was crying all the time and experiencing what this one doctor saw as signs and symptoms of major depressive disorder, but because I already saw life through the lens of diagnosis, I accepted the major depression diagnosis more readily.

Whitaker: Allan talked about how a diagnosis begets treatment. As you look back on your  exposure to different drugs, can you see in any way how  the drug treatment itself began to stir a different you, and perhaps even helped push you into these different diagnostic categories?

Fay: What is interesting about that is at the time I was first diagnosed, they weren’t giving anorexics medication. I never received a medication until I was in my late 30s. I had already received all these diagnoses, but I was the kind of person who wouldn’t take aspirin. I was just very anti-medication. I was scared of what it was going to do to me, and I think what else is important is I tried everything. Often people with mental illness, and I am someone with a mental illness or who had one, depending on how we think about it, are shamed by relying too easily on a drug. I really did everything I could. I meditated, I practiced yoga for 20 years. I tried everything, Chinese herbs, I did DBT, CBT, ACT, I mean, all these things that were supposed to help.

Cognitive Behavioral Therapy is an alternative to psychotropic drugs, but it also reified my diagnosis. It still said I was treating my diagnosis, but I will say that as soon as I was on the medication path, it went very fast. I had been given Valium when I was diagnosed with generalized anxiety disorder, but later, once I was given an antidepressant and then I started getting other diagnoses, I was put on ADHD medication, then taken off that, then the mood stabilizers came in, then lithium, then antipsychotics. And I think, to your point, the really important thing was I stopped questioning the drugs too, because if you’re not questioning the diagnosis, you’re not going to question the treatment that much, because why would you?

I thought we were getting to the bottom of it, I thought we were just getting to the answer. I had akathisia—I had horrible side effects from antipsychotics, which is where you just feel like you’re crawling out of your skin and you can’t stop moving. It was awful and yet I still wanted to stay on the medication, because I thought, oh, it’s got to get better, and that this is the answer.

Whitaker: You’ve talked about how this lens of diagnosis really shaped your life. How did you change your thinking? And what was that like to change your thinking, when you started saying that maybe these diagnoses aren’t valid?

Fay: I was at this point in my 40s and I was in crisis. I had been suicidal on and off for about a year. I had been diagnosed at that point with bipolar I, and I had a falling out with my psychiatrist who was also my therapist, and the falling out came because I started to see that when your therapist and your psychiatrist are the same person, you have no one to talk to you about your meds. And so I had asked him, can I see someone else for therapy and continue to see you for psychiatry? And he said, no.

I was going to just walk out, but I was just about out of my medication, and I said I need you to refill my prescription and he wouldn’t do that. I was at that time extremely fragile, and so the idea of finding a new psychiatrist or finding a new primary care physician seemed completely beyond me, but luckily, I am one of those fairly rare people who had the support of my family, and my sister found a new psychiatrist.

I went to see him, and we had our 27-minute or 34-minute first session, and I waited at the end for him to proclaim from on high what diagnosis I had, whether it was a new diagnosis or whether he would reify the old diagnosis. He looked at me, and he said, “I don’t know what you have,” and my whole world changed.

He’s still my psychiatrist because I was so grateful to him for his transparency. I didn’t actually know what to do with that information, but not only did I start to see myself differently, but the whole world.  That afternoon I remember walking out of his office and walking down Chicago Avenue in Chicago and it just seemed crisper, it was colder, but it was also more vibrant, and it was like someone just told me the truth.

Then I started researching. I wanted to know everything about mental health diagnoses, I had never heard of the DSM, and I just took it upon myself as a writer to find out everything I could.

I have to admit that I was so attached to my diagnosis, I had defined myself by it. I mean, I had filed for disability at one of my universities. Did I have a disability? Did I not have a disability? Do I have a mental illness? Do I not have a mental illness? I was suicidal. I didn’t know what to do with all the information that I had and I’m very fortunate that I had a purpose and that I had my research and then eventually the writing of my book to carry me through that time.

Whitaker: It’s a moment when you need to create a new self-narrative for going forward, for understanding your past and for going forward. The title of your book says, “The Story of Six Misdiagnoses.” Why misdiagnoses? Why not fake diagnoses or something like that?

Fay: I did talk to my editor about that, but one reason we went with misdiagnoses is that I didn’t want anyone to think I was saying that mental illness isn’t real, because I know 100% that it is. As I said, I have one, I take great pride in having had a mental illness. I don’t believe they’re chronic, I believe I’ve healed, so that’s why I say had one. But I very much identify as someone who had one because I know how strong people with mental illness are. We’re treated as weak and we’re not.

But it’s a diagnosis that’s incorrect, inaccurate, and inadequate. Every single diagnosis in the DSM is a misdiagnosis. Misdiagnoses felt right to me in terms of not dismissing anyone else’s experience or trying to make it seem like I was saying something that I’m not.

Whitaker: If I accept your understanding that you have a mental illness, there would still be a need for a manual that separates these illnesses. Everyone here agrees that the DSM is not a validated manual. But then what should be out there to help people who are dealing with struggles? Do we need a diagnostic manual?

Fay: It’s such a wonderful question, because when I think of mental illness, and when I say I was someone who had one, the DSM diagnoses were [nevertheless] invented by people. They were just completely invented. When I say I was someone with a mental illness, I guess I see it more as solidarity with people who’ve been through what I went through.

I do kind of want to bring back the word “neurosis” because there were times when I was simply reacting to my environment and when we say something is biological, it allows us to sidestep not just context, but the social and economic injustices that lead to mental instability.

At the same time, I was very, very ill and I had a break with reality and that feels very severe. I think what gets mistranslated is that neuroses are a reaction to your environment and can’t be severe, versus at some point I was no longer reacting to my environment, and I was in a spiral of what I consider to be mental illness. I had a break with reality and what was happening and unable to function. I mean, I couldn’t live independently. I lived with my mother in my 40s. That feels like something different than simply reacting to my environment. I don’t know. It’s a puzzle. It’s difficult.

Whitaker: Allan, I think there is an agreement among us that the DSM, as it has been presented to the public, has done a lot of harm. If something’s doing harm, what should we replace it with?

Horwitz: I think what sort of manual we need, as opposed to what sort of manual is possible, are very different things, because basically, psychiatry is a medical field. You have to go to medical school, you take it as part of a medical curriculum, and psychiatry is the only medical discipline where the diagnostic manual has any importance. And the reason is in other areas you have blood tests, you have x-rays, you have PET scans that can tell you what the problem is. Psychiatry doesn’t have any of those, all they have is a diagnostic manual. And the other very relevant thing is that the interests of clinicians and the interests of researchers are so divergent.

I think most clinicians take the DSM with many grains of salt, but they have to use it to get reimbursed for their services. You need to put a diagnosis down. Researchers deal with a much smaller group of conditions. They don’t need this huge manual, but they do need to think that they are dealing with the same condition that other researchers are dealing with. There has to be a certain standardization among researchers, which there doesn’t have to be among clinicians, so there’s a fundamental tension between clinicians and researchers. I just don’t see how it is going to be resolved.

Whitaker: So that’s where we are today. Forty years after DSM-III, we have a mess but we don’t know how to get rid of it.

Fay: I feel like there are some answers and one is to be completely transparent with patients about the diagnoses that they’re receiving. I don’t know that I would have done anything differently had I known that the diagnoses I received were invalid and probably unreliable, or if I had been given a diagnosis of generalized anxiety disorder and with it told, you know what, this has a reliability rating of 0.2 on a scale of 0 to 1. I mean, then I could think for myself, and I could say, okay, well, maybe this isn’t correct. Give us the information that we need as patients and to make the decision on our own.

Whitaker: There was a study done about people who didn’t believe they were ill with psychotic disorders, and they actually had better outcomes over the long term, because they were resisting the pessimism that is inherent in accepting that diagnosis. They retained a belief that they could get back to a more normal life. There was a similar finding related to people with depression—those who didn’t get treated had better long-term outcomes. So, as we speak about this, there may be some benefit in just rejecting a diagnosis.

Fay: I think that’s a good point. And it gives me so much hope. From my perspective where I am now, I have a diagnosis and I don’t know what it is. My psychiatrist has changed it three times since I started seeing him and I’ve never asked what it is. And I told him, I don’t want to know. So when I say that I have a mental illness, but I don’t go by a diagnosis, that’s just simply for me as a way to know that, yes, I did struggle quite a lot. And I need to do certain things to take care of myself. I exercise, I go to sleep at the same time every night. It’s not like I’m out partying, pretending like nothing happened. And I think that this kind of continuity of care is going to have to come from ourselves right now. But I do feel that I’ve healed. I do not feel that mental illness is chronic and that if we stopped telling people that it is, we’d have a much higher recovery rate.

The other complication with this is medication. I’m on medication and the psychiatrist I ended up seeing pared me back as much as we thought possible. I have tried to go off my SSRI and the withdrawal was so brutal, I will never try again. I mean, I almost ended my life and so I just can’t risk that again and it was so painful physically. Does that mean I’m not healed because I take medication? I was talking to someone about this, that I don’t know if I’m taking medication because my body is dependent on it or because it’s actually helping me with something.

Whitaker: So, it seems, we really haven’t come up with a solution for thinking about psychiatric problems in a way that would work in a medical setting and an insurance setting. Perhaps we should just begin with a declaration of humility and say we don’t know. It is clear that there are a lot of different paths that lead to what is called depression or psychosis. And once you begin with that humility, it opens up a lot of possibilities and a lot of different ways to respond. I’ll start with you, Allan. Is there any way we can have humility built into a diagnostic manual?

Horwitz: Probably not, because when you read the popular press about mental health, it’s exactly the opposite. There’s breakthrough after breakthrough and discovery after discovery and miracle after miracle.

Fay: I think we could just aspire to an absence of hubris. It might be a better way to go instead of trying for humility. I believe that some of the doctors I saw were careless, some were very well intentioned. I believe the psychiatrist I see now is extremely transparent and very honest with me. But one was, he had so much hubris, he was determined to make me bipolar. And he called himself a bipolar expert. So how could I be seeing a bipolar expert if I wasn’t bipolar? I think that more of what we can hope for is just those three words, “I don’t know.”

Horwitz: The APA can’t put out a new DSM-5-TR without saying, well, this is there are real advances here, it’s better than the DSM-5 which is better than the DSM-IV and DSM-III. And they’re really not and in many ways, the DSM-I and II were better than what we have now. But you can’t say that there has been no progress.

Whitaker: A final question. We didn’t use to pathologize growing up. Can you speak to the harm that is being done by putting kids into these pathological categories?

Horwitz: I think the single major difference, in terms of the labeling of mental illness now compared to say 50 years ago, is the pathologizing of childhood. And the number of kids now with ADHD, taking medication for ADHD, or autism spectrum disorders, childhood bipolar disorders . . . all of these rates have just soared in recent decades. I really don’t think it’s because there’s any fundamental difference in kids now compared to kids in prior eras. It’s because parents want these diagnoses. They seek out medication to medicate their kids. It’s a way of controlling bad behavior and makes their jobs easier. But I think they’re doing a real disservice to their kids in the long run.

Whitaker: Sarah, any last thoughts on this topic?

Fay: My hope is just to make people aware of what we’ve been talking about today, which is that DSM diagnoses are invalid, they’re largely unreliable, and that if we all knew that, we wouldn’t have to wait for psychiatry to do the right thing. I mean, that would give patients so much power. I didn’t know any of that when I was going through what I went through. And I want to save people and their families from going through the same thing, which means taking a diagnosis with a healthy dose of skepticism.

I have three questions that I encourage people to ask. One is to ask whoever is doing the diagnosing, is this diagnosis valid and or reliable? The answer is no. If someone says, yes, you’ve got a problem. The second is, has this diagnosis been proven to be chronic? And the answer is no, none of these have, we can heal. And the third is, what does this mean for me and what does it mean for the treatment you’re suggesting?

That’s what I hope for, that we will all spread this word and make sure that people have this information, and that they’re being empowered in this way.

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MIA Reports are supported, in part, by a grant from the Open Society Foundations