EPISODE TRANSCRIPT
JESSE: I have spent decades of my life trying to navigate society with a deeply ingrained, prescribed identity as a patient, that identity cultivated a belief that I was powerless. To try and better understand what that experience might be like for others I spoke to Marya Hornbacher.
MARYA HORNBACHER: I'm Marya Hornbacher, I’m the New York Times bestselling author of five books, four of which are on aspects of mental health and to some extent, mental health recovery. I've talked about eating disorders, bipolar disorder, addiction, and what I'm working on now is kind of a manifesto on mental health recovery and how it can be reframed and how psychiatry can work toward recovery for people who deal with mental health disorders rather than working toward continued dependence.
JESSE: I asked Marya about some of her previous experiences being voluntarily admitted to an inpatient unit for bipolar disorder. Specifically, I asked if she was aware about alternatives to an inpatient stay at the time when she was admitted.
MARYA HORNBACHER: I was not aware, uh, until I had, I mean, my last hospitalization for bipolar disorder was 2007, so I've not been hospitalized since 2007. At that time in 2007 and for the 10 or so years prior, I was in and out of the hospital, roughly every couple of months. And the expectation I had at that time was that I would skate along at kind of a sub par existence level and then I'd get sick again and I'd have an episode of mania or depression, and then I'd be walloped back into so, yes, voluntarily admitting myself, but also there were no mobile crisis psych units, there were no temporary housing options for temporary psych acute care. None of that existed yet, or if it did, nobody told me. And that's interesting to me now, because as I look back on it, historically, of course, those things existed. But if you report to triage and knock on the window and say, I have bipolar and they buzz you in and you'd go right on upstairs. I mean, you've got a straight shot up to the psych ward. If that is their expectation and they don't, you know, approach you with any alternatives and you're not aware of any alternatives yourself. I mean, when you're dealing with acute mania, or depression, or psychosis, you aren't Googling, how do I get better? You know, you're Googling, get me down off this, you know, I mean, just like, just get me out of here. And so that acute, that crisis model, I think really becomes a problem.
JESSE: So that's almost two decades of inpatient experiences. How does that shape your ability to form an identity?
MARYA HORNBACHER: That becomes trauma. You know, I didn't have a diagnosis of PTSD, but now I do. And I'm afraid of hospitals, I'm afraid of doctors, you know? So over time, my ability to form an identity I think was shaped in part by, I am ill, this is who I am, and I've heard people talk in, um, like NAMI support groups or, you know, support groups for people who deal with mental illness. People talk about, they're like, I am my schizophrenia. I am depression. I am bipolar. It's so sad to me because I'm like, I am a teacher and a writer and a friend and an Ace and a daughter, you know, I mean, those are my identities now, but that is after a lot of work at reframing identity for myself, you know, really a lot of work to see myself as functional outside of an institutional setting. To see myself as a viable, like a viable life form outside of who's medicating me and what you know, control, and who's running my power of attorney right now. It became very, very repetitive and very sad to me. And eventually it stopped seeming acceptable to me that that was what I was going to settle for.
JESSE: Was there a specific catalyst to this sort of reclaiming of your identity?
MARYA HORNBACHER: I think there was, you know, it was interesting. I started doing research on a book on mental health right around the time the DSM-V was being formalized and critiqued, heavily critiqued by some very, you know, Interesting arguments that were saying, you know, there's no science under this. That's not strictly true, but there wasn't a lot of science under the diagnostic categorizations, right? So I started going, well, what if bipolar does have 17 subtypes? What distinguishes that? And I started going, what do I have? You know, if I haven't been in the hospital in a long time, what do I have? And I started looking at my charts and going, okay, they've diagnosed me with everything under the sun and I don't have any of these symptoms and haven't for a long time, what do I have? And I started going well, the science. You know? I remember, uh, there was a line in the New York times where somebody said the golden age of neuroscience is right around the bend. And I started doing the research on the neuroscience, I mean, my training is as a reporter and there isn't a golden age of neuroscience right around the bed. And there isn't any science underneath the diagnoses. They're entirely phenomenological. I mean, they are based on symptoms. So philosophically speaking, if I don't have the symptoms of bipolar, I am no longer bipolar. But bipolar is chronic. So shouldn't I still be medicated and I'll become bipolar again if I don't take my meds? Well, I don't take meds now, and I haven't had an episode of mania or depression in years, so was I never bipolar?
I mean, that's the thing it's like, if we don't know the answers to those questions, there's a lot we don't know about who we're locking up and why.
JESSE: Marya’s experiences really resonate with me. I continue to struggle with how to claim an identity that I can be proud of after being told multiple times, by multiple professionals, that I am sick and an involuntary commitment was the appropriate action for someone like me. To try and better understand the perspective of someone tasked with evaluating the mental health of others, Committable producer Jim McQuaid spoke to psychologist Sasheen Hazel.
SASHEEN HAZEL: My name is Sasheen Hazel, I am a clinical psychologist, I like to say forensically trained. Here in Massachusetts you're only a forensic psychologist if you're working in a certain place, so it's like a live status right now. I'm the clinical director at an outpatient psychiatric practice. I also work in a trauma clinic, we call it the forensic team doing essentially parenting evals, trauma evals, usually DCF or sometimes the attorneys involved in these cases. My place on the forensic team that I'm on, my specialty is sort of, I've evaluated a lot of mothers immigrating from somewhere in the Caribbean, which is my ethnic background, or somewhere in Africa.
And so I'm often having to explain through my report to DCF the layers of issues around just culture, coming from a collectivist culture, and parenting practices, and the community that person has here. What was their ability to continue those practices? Do they understand the more individualistic practices around parenting here in the U S? And what's expected? And then you throw in mental health.
And so I am often, as a black psychologist, more able to state that yes, there are cultural issues, but there's still a mental illness.
JIM: Really excited to hear a lot of what you said, because a lot of the conversations I've had with, I'm a sociologist, and one of the things that jumps out at me is how some clinicians focus really a ton on just the individual patient and a lot of times don’t think about the broader context, and in the course of your description you talked about the individual culture, the system and the community, and all these different layers that you're taking into account.
SASHEEN HAZEL: I think that's why I like evaluation and not therapy, to be honest. And I came to this work, not because, you know, I don't have any long history of therapy or I don't have a dysfunctional, well, I mean, not necessarily a dysfunctional family, but more of a social justice, like, the reason I got interested, my parents were correction officers in the Bronx. And I remember take your daughter to work day. And I would go with my mom to work, she worked in the women's jail and you know, you have these stereotypes and conceptions of people in jail and what they’re like, what they're supposed to look like and act like. And so I thought I was going to be seeing these, like, you know, I was like maybe eight. I thought I was going to see these like negative people. And I mean, I was fascinated, but I was the total opposite. They were regular people. It just was a very humanizing experience. And I thought, I wonder how these people got here. I just became curious about that. And so that's kind of the line that I pursued. And so I've landed, luckily, fortunately, where I wanted to. I'm doing the work that I wanted to, but it hasn't been about therapy.
It's been more about making sense of people. And the reason forensic was an option is because I knew it would put me in a place to work with disenfranchised people who I felt had been possibly misunderstood, or maybe not fully understood. And so I do a lot, even when I do testing, just regular neuropsych testing, I often do long feedback sessions because I'm doing a lot of educating. Like self-education. I always tell people I could be wrong, but I just want you to understand how I came to this conclusion so that you can correctly and adequately describe that to the next person or, you know, so that you're informed because I cannot tell you how many people are misdiagnosed with like a bipolar disorder and really they've had a complex trauma history, early trauma history, or even some of the stuff around ADHD and, you know, people don't always take these things into context.
On the flip side of that though, having worked in hospital settings, you have to make a judgment. You've got to put that first diagnosis down based upon maybe a 15 minute interaction. I did about a year of working on the Riverside crisis team right after I graduated and you have to decide, do they need a higher level of care? And what level of care is that? Is that inpatient hospitalization?
And there's a lot of insurance stuff, insurance authorizations, and finding a bed like there's a lot of red tape there. So you really have to have your reasons.
JESSE: The red tape that people involved in these systems have to navigate is created by policy. Policy that is informed by research. But who is that research designed to speak to? And what voice is given to those who have to create their own path to recovery? Here's author Marya Hornbacher again, talking about the process of redefining recovery.
MARYA HORNBACHER: I have really, for myself redefined recovery. So like, as I was doing that research into the science, or lack thereof, underneath it. I started finding myself way more swayed and interested in the oral histories given by people who dealt with mental health diagnoses. Many of whom started saying this is a very, very gross and blunt way of framing this, but psychiatry didn't do me any favors. What has done me favors is figuring out how to live, not how to stay safe. The kind of default to the least possible risk approach of psychiatry is problematic for anyone who's an artist, anyone who's creative, anyone who has a different approach to mental health recovery.
And so reframing recovery for me started being like, okay, you've had me on these meds that prevent me from finding words for 15 years, I'm a writer, I really fricking need my words. Like, I really do. And so going off those meds, suddenly I'm writing again, suddenly I'm creative again, and it doesn't mean meds are by definition bad by any means. But I kept saying to my doctor, when I was at my most acutely medicated, I kept saying, you know, I can't think, drive, or see anymore. And he's like, but you're not in the hospital. I'm like, no, butI can't leave my house, man. You know, I'm definitely not in the hospital, can't find the stairs. And so like that debilitating nature of that approach was what I eventually began to, as I started taking oral histories from people, they were like, what I found worked was clubhouse model. What I found worked was recovery oriented psychiatry. What I found worked was all of these models of meditation and mindfulness, the psychosocial approaches.
And I, you know, once I started looking at the numbers in that too, they just have better outcomes. They just do. I mean, the rates of people who recover or do better, who have positive outcomes in psychosocial treatments as compared to the people who are succeeding on one med. Like, it's not even comparable.
And so like, if we're looking at a model of biological psychiatry that assumes there's a biological origin, there's a biological treatment, we will continue to fail in this epic way.
JESSE: Did these oral histories change your perspective on the system as a whole?
MARYA HORNBACHER: The system as a whole, of course, that implies an integratedness or continuum of care that does not exist.
We would love it too, right? We'd love there to be like, you're in the hospital and then they hand you off to the social worker who hooks you up with clubhouse. We know that's not how it's happening. You know, you can't even get your meds at CVS when you leave the hospital half the time. So like the system is a term that is, I think, ambitious for what we actually have in terms of mental health care in this country. We have lots of intersecting systems, all of which are for-profit, and that's a problem. And so what I saw people doing was gravitating in their recovery toward places that would help them get jobs, find community centers, volunteer, get housing, get creative again. And so engaging in life in a really different way, rather than stepping back and being like I'm fragile, I'm broken, I'm inherently diseased and flawed like that. Mentally you will stay there. You know, you will stay there, but if people are like, okay, you may have this diagnosis, what do you want to do for a job though? And when people started going, Oh, I have all these skills. I was, you know, in a former life before I was living in hospital full-time I was an accountant, you know, I was a teacher, I was a stay at home mom, I was a yoga maniac, you know, whatever. So like, when I saw these oral histories with people who had returned to a sense of self that had been really blurred, if not erased, by the system of mental health, you know, care.
JESSE: So it sounds like there's a really subtle but important shift there, which is that treatment is activity. It is doing something.
MARYA HORNBACHER: Yeah. To me it's engagement. I mean, how many fricking pairs of moccasins are you going to make in OT? You know, I don't know how many pairs of moccasins I've made in my lifetime, but I assure you, I have way more fun teaching college. I really do. And that's what I do for a living. Right? So like, why wasn't anybody saying, you know, do you want to go back to work? Do you want to finish this degree? Do you want to do some research while you're here? You know, that's not what's happening. They're in there literally making me color.
I remember a great conversation I had with a doctor. This was so classic. This was practically One Flew Over the Cuckoo's Nest. I'd broken my arm and gone into the hospital on the same day. They send up an orthopedist to look at my arm. And I say to him, when am I going to be able to type again? And he's like, what do you need to type for? I said, well, I'm a reporter, that's what I do for a living. He goes, what do you mean you're a reporter? I said, I write books. I write non-fiction books. It's what I do. He goes, you don't write books. And the nurses like in the corner going uh, sir, uh, before you go any further here. And at that point I had four books out. Like three New York times bestsellers and the guy's telling me you don't write books. And then he goes, well, it's not like you have a book contract. I'm like, we're done here, sir.
But I couldn't leave. Like, where am I going to go? Storm off down the hall in my hospital gown and hospital footies? The lack of dignity that is imposed upon patients and that patient identity that is so devaluing and so humiliated that we lose a sense of what is my core self? What do I love? What am I good at? What is my value? You know, how many times do you have to hear NAMI say the “burden of mental illness” before you're like, are you actually talking to mentally ill people? Are you talking to their families? Like, who are you trying to help?
JESSE: How do you engage in a conversation where you can advocate for yourself when you do need to go to the doctor?
MARYA HORNBACHER: The trauma around hospitals and doctors for me is pretty stark, and I don't want to pretend that that's the case for everybody, but it is true for me. So like, how do I advocate for myself? I had a lot of really kafkaesque conversations with physicians going in and saying, okay, you have nine diagnoses, several of which are contra-indicated and you're giving me a med that's going to make me die. Can we not do that?
Like, that's a stupid conversation to have. Like, how do I advocate for myself? It really becomes, I have to be so much more educated than the physician I'm talking too to prevent myself from being given meds that have literally put me in the ICU before. So like, what do we do? We retrain doctors. We retrain PAs. We retrain people maybe a little bit, but beyond that, I'm not really sure.
JESSE: In this conversation about identity, recovery, and navigating systems of care, I asked Marya if there is one thing. One thing that could click into place and get everyone involved in these systems on the same page.
MARYA HORNBACHER: To me there is the one thing, and that is recognizing that people with mental illness aren't crazy. They aren't. They may or may not have an organic illness, but they are dealing with distress, not delusion, half the time. One categorical diagnosis deals with delusions, one, the rest of the people are dealing with strong emotions, regulation of mood, impulsivity, like delusion is quite uncommon, actually.
And so like, when I'm dealing with an EMT, who's like “There there little lady” and I deck him. It's not because I'm out of control, it's because he called me little lady. This sort of, the paternalistic attitude. And so yes, understanding the law is important because I've had to explain to Occifers before that you can't arrest me for being mad at the way you're talking to me, that is not a crime, nor can you put me under a hold if I am not a danger to myself or others, that's a super basic law. So I've had amazing, I think, you know, I'll tell you, I think EMS and firefighters should win the award of awesome people of the year, because they are the only people who are dealing with you face to face. Like as a fellow human being, once you get into law enforcement, hospitals, doctors, the paternalism becomes so profound that it is intolerable, and it is unfair and laws get broken.
JESSE: To try and better understand the perspective of those who have just been given the “awesome people of the year award”, I spoke to Joshua Yeager.
JOSHUA YEAGER: I'm Joshua, I'm a physician assistant in Massachusetts working in cardiac surgery. Before I went to physician assistant school, I was an emergency medical technician and an ER tech, meaning I helped out doing vital signs and other tasks around the emergency department for four years.
JESSE: In episode one, I described the experience of being section 12, an experience where the opinion of one psychologist led to me being strapped into a gurney by EMTs and wheeled onto a locked psych ward. The memory of being escorted, with a smile, into a hallway where people in uniform are waiting to physically restrain me. That memory haunts me. So in order to better understand what those EMTs may have been experiencing. I asked Joshua about his experiences navigating section twelves as an EMT. Starting with the question, what is a section 12?
JOSHUA YEAGER: To me, what a section 12 is, is a “72 hour hold” or an involuntary psychiatric hold. So, uh, what we were taught was when we were responding to someone, or a patient who is section twelved, was brought to the emergency department. It was an involuntary psychiatric hold usually brought on by concerns from family or other physicians or friends.
JESSE: Did you receive any training to handle or approach a section 12?
JOSHUA YEAGER: If I remember from EMT school, we had a section about what section 12 meant. It was mostly focused on what our role was, not necessarily what the law was. So, what to do when you respond to someone with, uh, who was section 12’d and what the limits of how you can safely transport that person to the emergency department, you know, and basically how to navigate that scenario such that you could do so safely and kind of make sure to de escalate. EMT programs are pretty short. Mine was over a summer during school. So you can imagine how short the training was for. Uh, section 12 patient was.
JESSE: When you interacted with the community around someone who's been section 12’d, what was that experience like?
JOSHUA YEAGER: A lot of anxiety I think, especially when it was family members. A lot of guilt and, you know, there's an overwhelming desire to do what's right but whenever you take away someone's rights in this kind of fashion, it's very dramatic and scarring and it's, you know, I think no one ever wanted to invoke a section 12 on someone because it just felt unnatural. I mean, it always felt unnatural to me, the idea that I would forcibly restrain someone was always very disturbing to me. I don't think I ever really had to do anything that forcible, but knowing that that was something that could happen was certainly distressing to me. And I got that sense from a lot of families and of people I interacted with there too, that no one wanted to do this, but you just wanted to make sure someone stayed safe.
JESSE: Were you ever given any sort of techniques to, uh, prevent burnout?
JOSHUA YEAGER: When I was an EMT, I don't think burnout was something that was talked about quite as widely as. You know, now it’s a bit more of a recognized phenomenon within medicine, especially within emergency medicine. I don't think it was this talked about it quite as much. And I got the impression from older emergency department technicians that I talked to, you just sort of did this until you literally couldn't anymore. The job in general, not necessarily just this specific type of patient.
JESSE: After your time as an EMT, did those experiences expand your awareness of mental illness in general?
JOSHUA YEAGER: Oh, for sure being an emergency department technician, you know, and being on the front lines of patients that would come to us with all variety of psychiatric illnesses really opened my eyes. I actually became quite friendly with a psychiatrist who I later worked with in one of the hospitals, we didn't work together, but I knew him.
So I got to know him pretty well. And I got exposed to a wide variety of mental illnesses that I, you know, previously had no exposure to. And it was really eye opening for me, especially, like I said, seeing how all the onus of treating these patients, a lot of times came to an emergency department that was not necessarily built to do that.
And I thought, you know, it really became apparent that I don't know why all this has to be done by the emergency department. There must be a better way to do this. And there must be a better way to either train emergency departments to do this better, staff them better, or do this some other way, because you know, someone trying to treat four different heart attacks at the same time, just can't possibly give the appropriate treatment to someone with, uh, you know, acute psychosis or any number of acute psychiatric illnesses.
JESSE: Is there anything about this experience that you want to share? Any insight? Any awareness?
JOSHUA YEAGER: I think in my emergency department days, I think seeing how the emergency department had to become the frontline for patients with acute psychiatric illness really didn't serve anyone. It certainly didn't serve the emergency department and first and foremost, it didn't really serve the patients in a very helpful way. I felt, you know, a lot of the times they would come to the emergency department because there was no acute facility for them to go. They would end up having to stay in a room in an emergency department, which I can only imagine to a patient probably felt a bit like jail, which I felt is probably the worst possible way to go about this. So I think from all my experience, treating patients with acute psychiatric illness that sticks out the most is that the system that has now just kind of come down on an emergency department, I don't think is providing the best possible care. And I think emergency departments have always tried to adapt to the needs of their patients because that's what everyone in the medical field does. They adapt to the needs of their patients. But I don't know if this is the best way to help patients. That was my takeaway experience when I left the emergency department tech.
JESSE: The experiences that Joshua shared seemed to me to impart to some degree, the sense of being caught in a system, a system that can disempower not only those identified as patients, but also those designated to care for those patients.
I have spent two decades feeling like the road to recovery is a stealth mission, and the only way I can survive is to never get caught in that system again. Here's one last segment from the conversation with Marya Hornbacher about what resources she would recommend for someone trying to find their own path towards recovery.
MARYA HORNBACHER: Recovery research, uh, there are a couple of great centers. Like the psychiatric rehabilitation center at Boston university has a huge library of recovery oriented research. Not just like how to manage your mental health, but really looks at like, what are alternative strategies? What are psychosocial services and strategies that are effective for people with your particular diagnosis?
Clubhouse. For me like the fountain house clubhouse model, the clubhouse international model to me is the one and only straight up effective approach to mental health care that exists. You know, I do think most folks need therapy, I do. Beyond that it is so individual, it is so cobbled together, we do need some coordination of that, but really, to me, a lot of it is reframing your identity and re-engaging with your community in some way. Those are the things that keep us well, not just people with diagnoses, but everybody else too.
JESSE: And the clubhouse model, that's a peer support type of model, right?
MARYA HORNBACHER: It is, and it has nothing to do with mental health care. There's no therapy, there's no support groups. There's yoga, there's job training, there's data entry, there's a library, there's housing supports. You can clean the coffee maker. I mean, what it does is engages you in a community and gives you the option of figuring out where your skills are.
For people who deal with life skill issues, there's that. And for people who deal with like job re-entry issues, there's that. There's no kind of stratification of like high functioning/low functioning. You're all there and you're making the clubhouse work and that's it.
JESSE: In all of my experiences with commitments, both involuntary and voluntary, I felt constrained. Powerless to advocate for what I believed was the right thing to do. Hearing these conversations helps give humanity to all of the different perspectives of people trying to navigate these systems. And there seems to be at least one thing that we all agree on.
There has got to be a better way to help people in distress.