It is no secret that our healthcare system is not fair in how it diagnoses and treats patients of different populations. Yet reading abstract statistics about how identity markers affects one's likelihood of receiving an ADHD or schizophrenia diagnosis is very different than actually witnessing how such diagnostic biases affect real communities.
In "(Mis)Diagnosed: How Bias Distorts Our Perception of Mental Health," Chicago therapist, author and university lecturer Jonathan Foiles offers an insider's view of how a clunky reverence for the Diagnostic and Statistical Manual of Mental Disorders (DSM) and the imperfect, often incurious system often pathologizes the behaviors of certain groups over others. It is a tale of, as he puts it, "those who are least served by late capitalism."
Salon spoke to Foiles recently about what the mental health system still gets wrong, and why, in spite of everything, he has hope. This conversation has been lightly edited and condensed for clarity.
There has been a lot of conversation over the past few years about inequity in mental health care. What made you made you feel like you had something different to bring to that conversation?
It all begins with my work as a clinician. I've been in private practice for about the past two years and prior to that, I worked in community mental health on the west side of Chicago for five years.
Throughout my career, I've worked with like a wide variety of patients. In particular my experiences on the west side give me a firsthand example and a lot of the inequities that are not just a side effect of the system, they're kind of baked into it. I try to consider things from different angles, to weave together these narratives. It comes from the clinic, which I think is my primary motivation.
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There's a phrase you use — that diagnoses are "helpful, but by no means necessary." What does that mean?
Diagnosis can be a helpful way to gather up a cluster of experiences. You can even call them symptoms and assure someone that there's like a pattern to their suffering. You know that there's a community of fellow travelers there. That's how it works in theory, at least. From the clinical side of things, diagnosis is really just shorthand that lets professionals communicate with one another. In the American context with insurance companies, you could say this person is feeling sad, not eating well, not sleeping well, not interested in activities, and that sort of thing. Or you could just say they're depressed.
The two are functionally equivalent. One is just a convenient shorthand. What happens is a label like "depressed" comes to take on a lot of other meanings. I feel like we have come a decent amount of way in this country with stigma, but not with depression and anxiety, not with every diagnosis. I talk about in the opening of the book, a patient I used to see who was diagnosed with schizophrenia. When he heard that, that was just a word to him. But being a good millennial/Gen Z type, he went to look it up on the internet, what he found really terrified him. That's not anything inherent to the word schizophrenia, but as Susan Sontag and others point out, all diagnoses function within our society as particular metaphors for human experience, ways of understanding ourselves and other people that can be either reassuring or detrimental.
You often need that diagnosis to get services, to get treatment, to get medication. Then the sticky part of it is then, what does that diagnosis mean? It can be both a relief and a terror at this time, especially with mental health.
I think that too is a way in which we have a lot of inequities within the system. When I worked in community mental health I primarily saw patients with Medicaid and Medicaid based insurances. For them to start services, I would have to do a hundred plus questionnaire asking about their everything from their trauma history to how well they slept to their sexual practices and their physical health, all to arrive at like this diagnosis. It was pretty sticky, it would follow them around everywhere within the hospital system where I worked.
Now in private practice, it matters a lot less when I meet a new client. At the end it might be like, oh, it sounds like you have depression or anxiety, and I'll attach a little code to their billing for it. But that's kind of where the diagnosis ends, at least as far as my work is concerned.
Let's talk about what those diagnoses mean to different populations. I didn't know about schizophrenia and the way black men are so disproportionately diagnosed. Who is making these diagnoses and why do we pathologize certain populations?
This is just how bias works. I talk in the book about how the definition of schizophrenia was changed in 1968. In 1968, with all of its attendant uprisings and struggles, the diagnosis of schizophrenia was changed to include aggressive behavior. You see almost instantly this upswell of articles and professional journals and advertisements to prescribing psychiatrist and the population in institutions at the time just shifts overnight to include black men labeled with disorders along the schizophrenia spectrum.
I didn't know all of that history when I first started this work, but I saw it play out within the communal health clinic where I worked. It seemed even to me at the time, just on my own anecdotal data, that a lot of the black men that I saw, end up with these very comparatively heavy diagnoses. Other folks and other populations might get something that is still severe, like major depression with psychosis or whatever, but it doesn't carry as much stigma.
I don't think that the psychiatrist who diagnosed these people that I was treating had in mind this stereotype of the black radical or whatever as we saw in a lot of articles in late sixties and early seventies. They were probably taught by the people who grew up those articles and they probably practiced in settings and were trained in settings that reinforced that. It's not just in mental health. There's a lot of continuing lingering myths about black people experiencing pain less than white folks, for instance, or the maternal death rate of black and Latinx pregnant people. It's not just mental health, but I think in mental health, it has a different register because you're basically saying that someone's protests against injustice aren't just worthy of being ignored, they're a sign of an underlying pathology.
This also plays out very much in the ways that we diagnose our kids. As you point out, white kids are so much more likely to be diagnosed with ADHD, whereas black kids it's more ODD, oppositional defiant disorder. What then happens to kids when they get a particular diagnosis or labeled very young? How does that then play out potentially?
This goes all the way to the school to prison pipeline. I don't think it starts out like that. My wife is a public school teacher here in Chicago and she's great at her job. Part of every year when they transition students is talking about, "This student might need a little bit more attention in this way and the student might need this." For her, that's just helps her know where to focus her attention.
But for other teachers that's a way that you can begin these labels that can follow a kid kind of throughout the years, like, "Oh, this kid has ODD." And with a label like that, if you say someone's oppositional, it automatically colors how they're treated within the entire school system.
It's one of those things too, where even if the kids seems like they're behaving well, you can almost prove it's still, like, "Is he being manipulative?" Are those kids keep being treated differently? Then eventually, they become the sort of people who end up incarcerated in a country like ours that loves to hurt people, especially black people.
We as humans confirm the information we already are given. If I go into a classroom and I know one kid has "a learning issue" and needs extra attention, I'm going to look for and experience that child's behavior differently than I will from a kid who has "ODD." When that kid asks a question in a particular way, I'm going to respond kid differently.
All of this goes into the inequities that we've baked into the system. When you're in an urban public school setting where you might have 25, 30 to 35 kids in a classroom, you don't have enough resources to teach all of them as you would want to teach them. I you throw a label on a kid like ODD, if your resources are limited anyway, that of course impacts how you treat that kid and how you perceive that.
You talk in the book about how we've evolved in how we look about gender identity, yet "transvestism" is still in the DSM. The way that you actually articulate gender expression in the world might still be pathologized. Tell me about that.
Our understanding has grown by leaps and bound. The DSM-5 is at this point about eight years old, which in the grand scheme of things may not seem that long, but I do think society has advanced a lot since then. Psychiatry, psychology has long been very conservative. Famously, homosexuality gets removed from the DSM, but for a while lingers on this concept of ego-dystonic homosexuality — you may feel like you're gay and not want to be gay which of course, in a homophobic society, impacts a lot of people. And that stays in the DSM for much longer.
The people who worked on the gender identity stuff within the DSM themselves have expressed very conservative, I would say, even transphobic views on human sexuality and gender. There are certainly trans writers, Julia Serano in particular comes to mind, who've done a lot of good work around this. You think that this purports to be some sort of objective science, but I think the history of psychiatry and psychology proves that there is no such thing as objectivity when it comes to deciding what's mentally healthy and mentally not.
As you point out, this is also an issue for the BDSM community. Who defines at what point something moves from being a kink to being a fetish, to being an illness?
A lot of that is in the eye of the beholder. That's why therapists could advertise as "kink aware," "poly aware" or something along those lines. It comes from those communities being treated by providers who impose their own systems of values, and you can end up with some sort of pejorative diagnosis. That to me is just not in the interest of serving the client and not really what I think of therapy as.
You talk about this is in terms of trauma and PTSD as being viewed an event or a period, as opposed to looking at it as a chronic condition. Tell me a little bit about how that's changing and what we get wrong about trauma.
There have been pushes in the last two revisions to the DSM to get something like complex trauma diagnosis in there. They haven't worked and they haven't proceeded nearly as far as I think we should, but there is some movement on that. I think the diagnosis of PTSD is really good at capturing someone who has a pretty stable sense of life of normalcy, and has that shattered by a horrific event. But it's not so good whenever you're like marinating in it.
In the neighborhood where I live at here in Chicago, there was a random carjacking that happened a few weeks ago and an older man was shot and died. That still sticks with me because it's a pretty quiet kind of sleepy community and that doesn't happen very often here. But when I worked in community mental health, especially, I would work with clients who would fall asleep to the sound of gunshots and who couldn't even remember how many people they had seen murdered. Whenever you live in that sort of reality, you never really get to establish a sense of safety or a sense of inner calm. You don't have your sense of the world shattered in the same way because that didn't exist in the first place. I think we need a more robust sense of trauma that occurs throughout one's development to account for the really deleterious effects it can have upon one's physical and mental health.
There are spectrums that particularly in our American culture we tend to fall in, whether it is physical or mental health and mental illness. Either it's something that I have to live with forever and this is my identity now; or, "I'm cured." Particularly with depression or anxiety, you may flow in and out very often throughout the course of your life. How do we change our understanding of this fluid relationship that we're going to have with our brains, with our biochemistry and with our circumstances?
Part of it is in some ways expanding our sense of what's normal or what's expected. One thing that I've encountered, particularly with patients who experienced chronic depression is you can develop the mistaken assumption that everybody else is happy all the time.
It's normal in life to have peaks and valleys, and I think some of the language we've developed around self-actualization is helpful in many regards. It corrects a lot of previous imbalances, but also can give someone an overly sunny view of what life should be like. Freud famously said that the goal of psychoanalysis is to move someone from like neurotic misery to normal unhappiness.
Of course, most patients don't want to hear that. I want to help people the best I can. But, I think we need to expand our views of what's normal and what's not. I know when the DSM-5 came out, there was a lot of chatter like, "Oh, do we all have the mental illness now?" I mean, maybe, but I don't think that it only is a bad thing, if we construe it to be a bad thing. We certainly all pretty much get cold, and we don't do as any sort of moral judgment upon the person. I think just making space for people to realize tha normalcy is an illusion and that within that, you can own your experience, but also work to make it better.
What is your hope for how we move forward with a more encompassing understanding of mental health and mental illness in a way that really serves the most vulnerable populations who have been the most marginalized and most harmed by the mental health industry?
I think we are in some ways headed in the right direction. I'm the same neighborhood as the University of Chicago, and so I get to see a lot of students from there. I'm really impressed by the ways in which they juggle all of these things. I think that the younger generation has a good sense of, "I have anxiety, I have depression. That's part of me, part of how I make sense of the world." But it doesn't define them, and it also doesn't seem to be something we need to feel like ashamed of. I think should think on a broader society level, that's great.
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