It means something to put a word to the feeling, to the experience. It carries weight to be able to say, "I have ____" or "I am ____." It opens doors to treatments and medications and plans.
But what if that word is not the correct one, or even the best one? There's no blood test for depression, no scan for anxiety. Our mental health is a slippery and often subjective thing to define.
The Diagnostic and Statistical Manual of Mental Disorders, or the DSM for short, has long been psychiatry's gold standard for defining and identifying our conditions, a guidepost that helped create a common language and protocol for the field. It is also, as author and activist Sarah Fay writes in her new book "Pathological: The True Story of Six Misdiagnoses," a deeply flawed tool.
Beginning with her childhood assessment of anorexia, Fay believed what she was told about herself, and those beliefs — along with the therapies and medications that went with them — affected her profoundly. "I was told," she writes, "with certainty" what her disorders were. It's that certainty that merits deeper investigation.
Fay is a woman who knows the power of effective mental health treatment. She is also a writer who has rigorously explored the scientific validity of the DSM, and has a few questions, as she elaborates on in both her book and in our interview. Indeed, "Pathological" is both an intimate memoir and a useful guide through our enigmatic mental health system.
Just in time for the release of the DSM-5 text revision, Salon spoke with Fay recently about the power and limitations of the DSM, and what all of us need to understand about taking charge of our mental health.
This conversation has been edited and condensed for clarity.
A lot of us recently have been taking a test where we get our nose swabbed, and then we have an answer that is definitive and decisive. What's different about mental health, and what's different specifically about the DSM?
There are tests for physical diagnoses. There are exceptions, like migraines. There is some ambiguity in physical medicine, but most of their diagnoses are testable. We can have an objective measure of what it looks like.
"DSM diagnoses, they're lists of symptoms created by mental health professionals sitting around a table. That's all they are. "
For instance, we can see cancer on an X-ray, or an MRI. Strep throat has a test that we can test positive or negative for. There isn't a single DSM diagnosis that has an objective measure. I say that with a caveat — dementia and some rare chromosome disorders do have biological tests, and markers more so. But none of the others do, and those are the ones we're really abiding by.
They have no objective reality, which is frightening to think about. We are being diagnosed, and accepting diagnoses, that don't have that same [efficacy] as a Covid test, where you're getting a marker on a plastic device that's telling you yes or no.
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Misdiagnoses happen in physical medicine, and over diagnoses and false positives happen there as well. Often that's the result of technology error, human error. But there is some sort of objective measure that we can at least try to find what the actual diagnosis was.
DSM diagnoses, they're lists of symptoms created by mental health professionals sitting around a table. They're based on opinions and theories, not hard data, and published in a book. That's all they are. The real danger is that we believe they're something other than what they are. That's really why I wrote the book. That's how I thought. I believed they were medically sound, scientifically proven diagnoses.
I never really questioned, why isn't there a test for this? Why am I not getting a test? It never came up. I would never have thought to ask that. I'm hoping that my book will change that, and will cause people to ask more questions, and interrogate more, and enter into these diagnoses with some skepticism.
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There's a phrase you use, that it's a luxury to refuse a diagnosis. That's a big part of it as well, having that agency to push back and say, "Wait a minute, I have some questions." Tell me the beginning of your six diagnoses, with the first one.
When I wrote the book, and as I'm talking about the book, there are many people foremost in my mind. Children and teenagers are really a huge part of this. Self diagnosing on social media is becoming more rampant. The number is 20% of all adolescents and children will receive a DSM diagnosis in their lifetimes. That number's just creeping up. I received my first diagnosis of anorexia when I was 12. Already I had the lens of diagnosis put it on me.
Already I associated the physical pain, like a stomach ache that comes from emotion, and racing thoughts, with diagnoses. I already equated life and difficulties with diagnosis. That's something that I hope to try to prevent. I didn't know any better, and a lot of parents are not expected to know. We aren't told this by mental health professionals.
There hasn't been the transparency that we really want to have. My mother was very much at a loss. I remember going to Northwestern Memorial Hospital. My weight had gotten so low, and I was so unwell. As we entered Northwestern, her face was so drawn and troubled. She just didn't know what to do.
That's the situation that I see a lot of parents, teenagers and children are in right now. I wonder, what if we had questioned the diagnosis? Anorexia is a tough one because it's so visible. It's got such concrete symptoms. But at the same time my parents were divorcing. I was going to a new school. I didn't manage my mind. I didn't even know what that meant. My thoughts were always racing. For me, I was just sad, upset, and had a stomach ache, and I just didn't want to eat. It was really a refusal of food, because I didn't feel well. So I didn't even question that diagnosis.
The book is is not anti-mental health treatment. This is not against getting help. This is not against the reality of real emotional issues, and real psychiatric problems, and challenges. So what are you talking about when you talk about the diagnosis which comes handed down on the tablets from the DSM, and these real issues that people are facing right now?
I'm so glad you brought that up. I 100% believe mental illness is very, very real. I believe I have, or had one. I have zero shame in that. I feel very joined with other people with severe mental illnesses.
There are two types of mental illness. There's serious mental illness, and then any mental illness. The serious mental illness is really defined by the NIMH as being when you are incapacitated to the point that you can't live independently. [Editor's note: NIMH is an acronym for National Institute of Mental Health, the lead federal agency for research on mental disorders.] I couldn't live independently for five years. There's no question something was wrong from an early age.
I very much identify with having a mental illness. The difference is the diagnoses we receive, which are invented. They are constructs. That's not me saying this. This is Thomas Insel, former head of the NIMH, who called them "constructs." Steven Hyman, former head of the NIMH, called them fictive diagnostic categories.
I had no idea that was the case, but they are invented, and we're trying to get help within those diagnoses. The result of that is pathologizing somewhat normal emotions, thoughts, and behaviors. That feels problematic on many levels. Just for the public at large that the idea that 46% of Americans adults will receive a DSM diagnosis in their lifetimes is an almost absurd statistic to believe.
There is serious mental illness, and that needs to be treated. We need to be devoting our resources to that. Then there are normal, very difficult, very troubling emotions, thoughts and behaviors. My question is this, and it's just a question: what if we talked about the symptoms instead of diagnosing people?
Instead of calling depression the diagnosis, the same term as the emotion of depression, what if we talked about, "You have depression, or you have sadness"? We could do that. That is still meeting a need. We can't, because that's not how insurance companies are set up.
To be very clear, I am on medication. In no way am I trying to question DSM diagnoses to the point that anyone would be prohibited from receiving services. I see a psychiatrist, and I respect him very much. You mentioned that the diagnoses come from on high. The DSM used to be called psychiatry's Bible, because the idea was everyone follows it to the letter.
Many mental health professionals have defended themselves by saying, "Well, I don't really do that." Which is a little bit frightening, because that means the diagnoses are perhaps even more random. But now I think the idea of the DSM Bible is that it's this intractable text that they will not revise, and they will not fully reform and correct the mistakes of the past. The diagnoses in there that have led to false epidemics, like ADHD, autism, et cetera. Bipolar too was a big one as well.
What does it mean if we don't get a diagnosis? Can we learn to live with an ambiguity of managing symptoms without necessarily ever having a name for this? And what is that distinction between, I feel something, I have something, I am something, I had something? What are those distinctions for you?
I think the "had" is really important. Right now we are being told, or at least led to believe by not clarifying, that DSM diagnoses are chronic. They are not. There is no definitive proof that that's the case. That's such a disservice to people. "Had" should be in there.
A friend of mine went to a mental health professional who set up an exit strategy for him. He said, "You have this right now. It's not chronic. Let's set up when you're feeling better." Not "if," but when you're feeling better. It was a thing he had, and he could possibly come out of it. That's a huge part of it, is the have, had. We don't know enough right now. As I said, I believe I have a mental illness, if that's how we want to look at it.
I have to say that because I need medication. I need treatment. I have to have something. I don't feel any shame. I want to be an example for people. You can have a mental illness, even a serious mental illness, and not be ashamed. I was for many, many years, and hid very much, and still get treatment. You can take medication. That there's nothing wrong with that. The withdrawal community sometimes shames. It's called pill shaming, which I think is a really terrible direction for us to go in.
I'm not quoting her exactly, but Paula Caplan said that diagnostic labels never reduced anyone's suffering. I think that's really fascinating. There is a real risk to putting a diagnosis on someone. Right now, you have the American Psychiatric Association and the authors of the DSM just widening the net, trying to get as many people diagnosed as possible. The DSM-5-TR is coming out in March.
They've not rectified the mistakes of the past. They've made very few criteria changes to correct, and they had a decade. It's the first text revision in a decade. That I think is where the real issue is. Why don't we step back, and use caution in accepting diagnoses, and in doling them out, or giving them out?
These diagnoses then can really be used against you. There is a real risk in that diagnosis as much as that is also an attractive thing to have, to get services, to have a word for how you feel that other people understand.
I definitely went through that, which was whether or not to let the people in my department know, to let anyone know to write about this. My family did not want me to write this book. They kept saying, "Do not write this. It's going to ruin your life." Now, they're very excited about it. It's all worked out okay so far. But I have the experience, especially with having been suicidal, and many, many times.
I wrote about that for The Rumpus, and then I decided to go on the academic job market. I asked my colleagues and my boss at the time, "What do you think I should do? Is this going to hurt me?" Depression, anxiety, those are okay, but when you get into schizophrenia and suicidality, well, then we're talking about something else. That's already a problem, that some diagnoses are accepted and some aren't.
I actually ended up taking my name off it and it's still up as "Sarah F. " It's in the book, so people can find it. I have so much privilege. Having worked with students with disabilities in the New York City public schools in very economically deprived or marginalized neighborhoods, they do not have any of the advantages that I had to get well, and make some of the decisions that I've been able to make. Or just being able to decide, okay, if those people don't want me, then maybe that's not my place. That's such a luxury to be able to do.
When you talk about these kinds of options, you're also getting at, who gets a diagnosis? You talk about the bias of diagnosis in terms of defiant disorder, or OCD, or who gets diagnosed with schizophrenia. Yet we do still think of these diagnoses as being objective. Tell me why they're not.
They're not objective, because they don't have scientific validity. There's no biological marker. There's no objective reality to measure them against. The other big thing is that they blend into each other. One shocking statistic that I read in a Johns Hopkins study, is almost half of the patients in the study that were diagnosed with schizophrenia were reassessed, and diagnosed with either depression, another mood disorder, or anxiety. Those diagnoses should not have that kind of crossover. Diagnoses are not what they call discrete diseases. They blend so much, partly because they aren't the result of scientific discoveries. They aren't the result of someone seeing something on a scan. They are theorized. How could they not in some ways blend?
The other problem is with reliability. That's something that I didn't know. I was on my sixth diagnosis by the time I read you should always see two psychiatrists. No one ever told me that. I just trusted the first psychiatrist I saw. The other problem that doesn't come up as much as it should when we talk about mental health is that I didn't see a psychiatrist until I was in my forties. I did see one when I was 12, but at Northwestern. But otherwise, my diagnoses were given by primary care physicians. Several were given in hospitals by a man in a white coat with a stethoscope around his neck.
How could I not trust that these were scientifically valid and reliable? That this person, it happened to be all men in my case, was really giving me a diagnosis from on high, as you said?
It's the validity issue, the reliability issue. The diagnoses themselves, any research that they're based on is in a research setting, not in the real world. We're trying to use diagnoses that were tested in a research setting in the real world, and they don't translate, as many mental health professionals have complained. But we do need them for getting services and access to medication, and mental health professionals.
Another thing we need to really be looking at in a concerned way is medication. It's a real "keep throwing stuff against the wall, and see where it sticks until you feel better" gambit. But in the meantime, it might make you a lot worse. When we talk about medication, what do we as patients not understand about what's going on?
I just want to preface this by saying that a lot of the attention gets paid to big pharma being this evil monolith. I understand that, and in some cases it's well deserved. At the same time, I've benefited so much from my medication. Because if the diagnosis is solid, the treatments could actually help.
The definition of a disease is if you can say how it's caused, what the symptoms are, what treatment should be used, and the prognosis. We don't have any of those four with mental illness.
The DSM doesn't recommend treatments at all. We're following their diagnoses, but we don't have any treatments that are being recommended. So, pharma steps in and does that. Really has in some ways carte blanche to do that.
There are two things that I would say. One is the gray market — off-label prescribing. When I was prescribed an antipsychotic, I remember sitting in my psychiatrist's office. My alarm bells are just going off. Why am I being given an antipsychotic when I've never experienced psychosis? I didn't step forward and ask. I didn't object. I didn't question.
You can prescribe an antipsychotic now for almost anything. Just know that they are prescribing off label. The other really disturbing fact that I came across are disease awareness campaigns. I don't know enough about the marketing business, but it feels like something we should urge for regulation.
For instance, social anxiety disorder is suddenly everywhere. There's a reason for that. It's not that more people have social anxiety disorder, although more people have social anxiety, obviously because of the pandemic, and being in quarantine. But even before the pandemic, it had increased.
That's because GlaxoSmithKline got the approval for Paxil to treat social anxiety disorder, which had a percentage rate of like two percent. Then they didn't market Paxil, they marketed social anxiety disorder. One ad said, "Imagine being allergic to people". They were marketing the DSM diagnosis because they knew that would create an increase in the demand. I just had no idea.
I probably would've tried any medication. I was desperate by the time. Not at first. I was very skeptical. I was the kind of person that wouldn't take aspirin for a headache. I just didn't like pills. Then by the end, I was just going on and off medication so quickly, and getting really quite sick.
That's just something to keep in mind, asking questions and saying, "Where is this coming from? What does this mean?" Just also being okay and being comfortable with ambiguity.
You mentioned conversation, and that's what I really wanted from this book, was to open up a conversation. I know doctors are really treated in some ways as gods. We are scared to question them. That's okay. Even if we don't ask the questions of them, we may ask them of ourselves. Just step back and be a little more skeptical.
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