← Duologue with Leslie Heaney
Duologue with Leslie Heaney
Mental Health, Medication, and the Importance of Informed Choice with Laura Delano
01:00:30
When Laura Delano was just 14 years old, a single psychiatric appointment set her on a 14-year path of diagnoses, medications, and a belief that her brain was permanently broken. In this conversation, the author of Unshrunk shares how treatment that i...
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- [00:03]
A
Hey, everybody, this is Leslie, and you're listening to Duologue. Very excited to be sharing this new episode with Laura Delano, who's the author of Unshrunk. Unshrunk is a memoir of sorts that explores Laura's own mental health journey, starting with her diagnosis of bipolar disorder just when she was 14 years old, through her teenage years and her young adult years, when she was in and out of mental health facilities and heavily medicated and still not gaining any relief. Her doctors at one point told her that she was resistant to treatment, meaning that she really couldn't be helped. And she sort of resigned herself to accept a life of mental anguish. That is, until she went to go visit her sister in Vermont, just wandered into a bookstore and discovered this book called the Anatomy of an Epidemic by Robert Whitaker. And this book totally changed her perspective about her own mental health and really prompted her to ask the question, what? What if it's not me that's resistant to treatment and unable to get better, but what if the problem actually is the treatment itself? So this episode and this conversation really delves into not only Laura's own mental health journey, but it really offers research and data about different diagnoses, how and when medication is prescribed, the efficacy of certain commonly prescribed drugs, and also explores, through Laura's own experience, how perhaps for some, a non traditional way of treating yourself, whether it's no medicine or no therapy, may be, for some people, a way to find peace and a path forward. So Laura has also gone on to found an organization called the Inner Compass Initiative, which is a not for profit that provides information and resources to those who are interested in either learning more about the drugs that they're on, or the type of therapy that they're receiving, or people that might be interested in tapering off of prescription medicine. So I found the topic of alternative approaches to mental health treatment really fascinating. Laura's so open and transparent. Transparent. Her journey really so inspiring. I thoroughly enjoyed and learned a lot from this conversation, and I know that you will too. So with that, here's Laura Delano. Laura, I'm so happy to have you here. Thank you so much for coming. We were just talking. Both of us just walked from Grand Central, and it was not a cool stroll. I don't even know. Cam, who's helping us here today, is hopefully gonna. Maybe you can Photoshop my hair, Cam. I don't know how that worked out, but the humidity is high. It's very high indeed. It is.
- [02:41]
B
Wall of heat, wall of water.
- [02:44]
A
I'm so happy to have you here today to talk about your book Unshrunk, which I feel like I know you because I got to hear your personal story, which was heartbreaking in the beginning and then so inspirational as you kind of move through, you know, your own sort of evolution with how you were addressing your mental health. And I found it really just very inspiring.
- [03:07]
B
Thanks, Leslie.
- [03:08]
A
So let's talk about the book. The title of your book, as I said, is A Story of Psychiatric Treatment Resistance. And, you know, you point out in the intro of your book that you are not in any way advocating against people using pharmaceutical drugs to help them in their treatment, but you have a position that it's just important for people to understand what they're taking and what the side effects of those medications might be.
- [03:35]
B
Exactly. For me, it's about informed choice. And in order to make an informed choice, you have to have good information and options so that you can truly choose. And the case that I make in my book through telling my story and a bit of the broader story of the mental health industry over the past century is that on the whole, we are not being given good information and options so that we can make true choices. And so I wanted to show in my book what my own journey towards informed choice looked like, what I learned that I wish I'd known at the beginning, that I wish my parents had known at the beginning, that we were never told, and that at the time, it didn't occur to me to learn for myself. Because at the end of the day, you know, my view is, who am I to. To think I know what another person needs or doesn't need? And these drugs can feel really helpful, especially when used in the short term, just not for the reasons we've been told they can be helpful for. For different reasons. And that's what I want to. What I set out to show in my book.
- [04:39]
A
Yeah. You know, I. One of the things also that struck me, and I think we'll maybe get to this a little bit later, but you mentioned about having the information so that the patient, you yourself, can make informed choices. But I sort of also took away from the book that oftentimes the doctors that are prescribing these medications don't always have all of the information either.
- [04:59]
B
Yeah.
- [04:59]
A
So let's talk. So the book, which, as I mentioned, was, by the way, you're a beautiful writer. I was just immediately felt like I knew you and was just compelled to hear more and sort of got taken into your story, but you sort of tell your. Your entire journey. Right. So Take us back. You know, you open the book kind of talking about you're in middle school, right, and you're this star pupil and the star athlete. And then you had this experience, and then from there things kind of went in a lot of different directions.
- [05:29]
B
Yeah. So I. The story of my psychiatrization, as I like to put it, okay, really began at age 13, and as you said, I was, you know, kind of on paper a good student and good athlete and had everything together. And I was at a private all girls school in Greenwich, Connecticut, and so kind of grew up in this environment of success and perfection and accomplishment and achievement. And I had this profound crisis one night in front of the mirror in which I realized I didn't know who I was. And oh my gosh, I'm just a fake robot programmed to perform by all these adults around me. But who am I? What do I care about? I'm just a fake and a phony and a fraud. And that, that realization was agonizing and terrifying and confusing. And I, I didn't tell anyone about it. I just kept it to myself and, and tried to pretend I, I hadn't had the realization, just tried to continue on keeping it all together. But eventually I kind of collapsed and basically fell apart at home and was acting out and I began cutting myself and yelling and screaming and thinking about death. And my poor parents were like, oh my gosh, what has happened to our daughter? And, you know, God bless them, they were so scared themselves and didn't see anyone else talking about their children struggling.
- [06:55]
A
Right.
- [06:55]
B
And so nor did I see any peers talking about it. And so my parents ended up sending me to a therapist, and that therapist eventually sent me to a psychiatrist, and I was swiftly given a bipolar diagnosis in one appointment and immediately put on a mood stabilizer and an antidepressant. And that began what ended up being the, this long, epic relationship with the mental health system, as I like to put it.
- [07:22]
A
But, you know, you just brought up something. You said. Your parents, they, they didn't see their, their friends, children going through the same thing. But outside of your home, you presented as. I mean, you weren't just a straight A student and you were a nationally ranked, the top 10 squash player. You were president of your class. So here you're going to school and you are performing, and nobody had any idea that you were having this internal struggle, which I think is just. Anyway, it's, I think that's just an interesting thing about life sometimes, right, that you, you really don't know what's going on behind closed doors in anyone's life.
- [08:00]
B
Totally.
- [08:01]
A
So you get this diagnosis and as you mentioned, and that's sort of, I think I alluded to it a little bit earlier when I said that, you know, some of these doctors maybe are not always as informed, is that you did get that diagnosis really quickly.
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B
Right.
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A
You went to this therapist and think your parents might have gone with you and then she referred you and then what were you put on at that time? That after that first meeting with that psychiatrist?
- [08:27]
B
I was put on a drug called Depakote, which is officially an anti epileptic drug, but it's used, it's marketed as a mood stabilizer. And then I was also put on Prozac, which of course, you know, everyone knows is marketed as an antidepressant. And this was in the mid-90s. And at the time neither of these drugs was even approved for psychiatric use in children. Depakote still isn't. It's only approved for epilepsy in children. I experienced when that psychiatrist handed me these prescriptions as this 14 year old girl who felt so angry and scared and despairing and who felt so clear on the fact that I wasn't the problem, it was the environment that I was in that was the problem to be handed these prescriptions. Like what it felt like to me was that I was being told, you're defective and we need to fix you.
- [09:18]
A
And did they say, you know, it's funny, you know, this has been told to me, you know, or I've heard this over the years and you mentioned this in your book, sort of it being described as a chemical imbalance in your brain. Was that what you were told at that time or was that sort of. Or it just was the diagnosis and it wasn't sort of attributed to any kind of physical. Almost like you would need eyeglasses because you, you're not seeing as well.
- [09:41]
B
Yeah, initially what I remember is being told that this was an incurable illness in my brain. At some point early on I definitely picked up on this whole chemical imbalance narrative as well. But, but I was told right out the gates that this was incurable in my brain, that I could basically, I would basically have to manage with medications for the rest of my life. And again, I had seen this doctor for 1 hour and 14 years old and that people are often shocked at that part of my story and they just can't believe it's possible. And what I say is like this is, this is how it often works for, for, for people who are given a first diagnosis. It happens very swiftly, oftentimes in one appointment. And. And it's based completely on subjective, disubjective observations of the psychiatrist you're sitting in front of. There are no brain scans, no lab tests to date. The National Institute of Mental Health acknowledges that despite decades of looking for a biochemical cause for mental illness, we don't actually have any evidence that there is one. And yet most people believe this idea that it's about faulty brain chemistry. And I certainly did through the entire time I was a patient.
- [10:59]
A
You know, looking back at that event, you're in 8th grade, you're looking in the mirror, you're feeling like that you're a fraud and all these things. When I was reading that and thinking about it, I thought, you know, is part of that also, like hormones you're going through puberty, adolescence, just sort of that natural questioning of who you are, not. Not trying to belittle the intensity of what you were feeling. But I have teenagers, and I was thinking to myself as I'm reading this that, you know, they have. It is a bit of a roller coaster when you look back now, how do you see that time period?
- [11:32]
B
Yeah, and I mean, I think what I was going through was a, very common, B, completely rooted in the fact that I was hitting puberty, as you said, and C, actually a sign of my vitality that I was waking up, I was connected to the world around me. These, These struggles that I was having, I think were actually very meaningful responses to this high pressure environment that I was in. And these. And, you know, it's funny, like, in. In retrospect, I see that this. It was almost like I had an ego death that people will sometimes meditate for hours to reach. Right, you, right you, you kind of transcend the self and you realize, yeah, what is. Who am I? What is the self? I'm nothing. I'm nothing. That it could have been this transformative, even liberatory experience if I'd had, you know, support and, and kind of context around me to, to make sense of it as, as a meaningful response to coming alive in the world. But, but, you know, given the. The town I was in and the environment that I was in, it just wasn't something that anyone was really talking about. And so I just concluded like, some I'm. I must be the, you know, some what. Why am I thinking this? I. I must. Something must be off with me because, you know, I'm the only one. At the same time, I did recognize the wisdom in it. At the beginning, I recognized that my anger was righteous. So to be labeled as the sick one was really hard for me at that time.
- [13:02]
A
But you also. I should mention that this is not. When you wrote this book, it wasn't just you sort of having recollections about, you know, these visits with these different doctors. You actually went back and got the medical records so you could see what notes were made about those visits. And, you know, some of These visits were 10, 15 minutes. Some of these visits were, you know, as you progressed. Right. They were not, you know, very lengthy. They were not sort of getting to. It was just really shocking to me, sort of, you know, watching that journey. But also, I just kind of applaud you for the amount of research and the deep dive that you did, not only into your own medical records, but into just the entire mental health. I don't use the term industry, but sort of the evolution of that field over the past hundred years, which I want to talk to you about a little bit later, because I don't want to keep you off track of your flow of your story, because you had that experience and then you decided to go to boarding school. Right. So tell us about that. I don't think you were not seeing a counselor at boarding school. You were managing things and you were not taking your medicine that time. I think, if I recall.
- [14:11]
B
Yes, for the most part, I didn't take any of the meds when I was. When I was at boarding school. And, yeah, in my, you know, naive teenage girl mind, I thought I'd run away from. From Greenwich by going to a new, New England boarding school. And. And in many ways, it was a. It was a good change, you know, to be on my own and all of that. But I was still me, and I was still bringing with me the same kind of deep sense that I didn't have a real self. And so I did leave behind the diagnosis and I didn't take my meds. And we. My parents and I kind of spent a few years almost pretending that that hadn't happened. But by the end of high school, I hadn't actually resolved any of these deeper existential struggles that I was facing. And so I ended up getting into Harvard. And, you know, a part of me knew this is still just this performance game that I'm stuck in. But another part of me yearned for me to be wrong and for me to get to Harvard and finally feel okay in my skin and be like, oh, phew, what a wild few years that was. Now I feel good in my Skin and I belong here and I know who I am. And of course, that didn't happen once I got to Harvard. And that's when things really spun out.
- [15:25]
A
I was going to say, so let's talk about that. So you get to Harvard and you did have that anticipation or that hope that you were going to get there and sort of, you know, it was going to be a fresh start and you were, that's where you were sort of meant to be. This made sense. This is your, your time at, in your, at university. And you ended up sort of kind of turning a bit to, to self harm, right?
- [15:47]
B
Yep. Yeah. When I quickly realized, okay, I still don't know who I am, I, in a panic, just began running away from that reality. And so I was drinking a lot and I was doing a lot of drugs and I wasn't sleeping and I was getting myself into all kinds of precarious situations. And my grades, you know, I wasn't, I was skipping classes and I wasn't. It was the first time that my, my grades had actually not been, you know, stellar enough for my standards. And so by wintertime, and it all culminated with a debutante ball that I go in into in the book. You know, I was, I had came out as a debutante and was on a literal stage, you know, playing through my life, which felt like a stage that I was performing on. And I just lost it at that point and, and wanted to die so badly. Couldn't see any hope for myself and that desperation and just the, I was just so exhausted of, of all the pain. I was just so exhausted by it. It was at that point that I said that psychiatrist years earlier must have been right. There must be something wrong with my brain, because why do I feel this way? There's no reason why I should feel this way. And it was at that point that I went back kind of voluntarily to a psychiatrist and got right back on meds and very quickly took this kind of perfectionistic, overachieving tendency that I had in school and began applying it to patienthood and to focusing on being a good, good patient, coming to therapy, taking my meds, reporting my symptoms, and, and, and that's when things really, you know, went off on a different path.
- [17:36]
A
Yeah, I remember. And I, I, because I, and I'm sure I'm. I could so correct me when I get, when I get things wrong. But I think you, that was the moment where you were like, gosh, I'm. You're almost excited. You're like, I, I think you called your dad. And you're like, I've. I've got. The diagnosis that I got of bipolar disorder was correct years ago, and now I have a path and I have a doctor that I can speak with and I'm getting medicine and I'm. And you were relieved and almost excited to have, to have the. You could see sort of a path forward where you could get, get towards having a healthier mental health.
- [18:09]
B
Yeah.
- [18:10]
A
So then, though, and was this the time when he starts prescribing and you said, I'm, I'm having trouble sleeping. Right. And that. And then, then it starts. You start getting prescribed medicines to alleviate the side effects from the other medicines that you're on?
- [18:27]
B
Yes. And, and at the time, I wasn't even necessarily seeing that that's what was happening. I was, you know, having new issues arising relating to sleep, relating to, you know, anxiety, relating to depression. I was not necessarily interpreting those as adverse effects, nor do I recall my, my doctor interpreting them that way either. It was just kind of over her conditions evolving, progressing. So let's throw some of this in. Let's switch from drug A to drug B. Let's add this, let's add that in retrospect, it's clear to me that this, you know, kind of polypharmacy regimen, this prescription cascade is a term that's often used, was very much about, you know, one drug causing new problems that are then medicated with another drug that causes new problems that's medicated with another drug. But I was interpreting this as a reg, like a regimen that was of meds, that was thoughtful.
- [19:28]
A
Right.
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B
And, you know, the more I was on, the more care my doctor was kind of investing in me, it just, it took on this. I know I wasn't thinking critically about it at all. And as I went deeper into this kind of identity of being sick, and I'm really glad you brought that point up about how much relief I felt. And I just, I want to name for any listener who either is currently or has in the past found benefit in receiving a diagnosis, that relief is real. I mean, I was so desperate for an answer, for an explanation as to why I felt the way I felt, because that would then open up, like you said, the hope that maybe now I can get help and get treatment and feel better. And so the more I, I invested in that idea, the, the, the harder it became for me to think critically about any of the kind of adverse implications of the diagnosis or the meds. And, yeah, I only came to see it in many years later, in retrospect.
- [20:31]
A
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- [22:24]
B
Yes.
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A
And there too, you being a person that loved being, you know, a stellar student and following a program and getting sort of the, you know, the feedback from your doctors, like, you're doing a great job. Laura, this is great. You were like, oh, people are watching me here. You know, I feel safe here. I'm in the right place. But what was interesting to me too, as you were, you, you talk a bit about, and I'm jumping around a little bit, but about the history of how we in the United States have addressed mental health historically. And we used to have these things called Asylums. Right. Well, people would go. And it was almost like a. You would have perhaps therapy, maybe you'd work on a farm. It was. You would have to stay there working and living together and. And having intensive therapy. And at some point it shifted where it became like while you were there, you realized, I'm not. I'm just kind of just getting medicine. Right. There weren't other components to it.
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B
Yeah, yeah. I mean, the history of the evolution of psychiatry in the U. S. Is a really fascinating one, and it's obviously a complicated one too. But originally, you know, when. When the asylum model came to the US it had been inspired by. By Quakers who. And. And the whole premise was that people tend sometimes break down, go crazy, get wacky, have struggles. They are temporary periods that you can move through. And if you kind of take a break from your life and you connect with the earth and with purpose and with community, you can move through. Now, I don't want to paint too rosy a picture of it because there were also very barbaric things that were happening in these asylums. But the idea was that these were temporary periods of your life that you could move through. And in the. In the. Really. In the mid 20th century, with the almost accidental discovery of the first psychiatric drug and a tranquilizer called Thorazine, suddenly psychiatrists realized, oh, wow, we can actually use pharmaceutical drugs to change the behaviors and the states of mind of our patients. In order to justify doing that, it's important for us to begin talking about these states as illnesses, as these medical conditions, just like any other condition, because that will then help people understand why they should take medicine. And so there was a real shift in that period of time. And what was originally kind of the psychoanalytic dominance of the profession became much more medicalized about, you know, these are brain diseases with treatment and medical treatment.
- [25:05]
A
Be called mental hospitals versus asylum.
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B
Exactly.
- [25:08]
A
And back in. In the old days. Right. You would hear, like, you would hear, you know, I don't know, is it Van Gogh who. He had a nervous breakdown and he got so these, like, sort of. And then. And then they would kind of pop back into society. It wasn't sort of focused around drugs or it was sort of about kind of taking a step out of where. Whatever their community was or what society was at the time. And then with the hope of being able to reenter.
- [25:35]
B
Yep.
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A
But then there was other, as you mentioned, some barbaric practices like lobotomies and. And things like that.
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B
Yeah.
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A
And I think that the lobotomy is the early version. Right. In some ways of. Of drugs. Right. They were trying to actually change. Change the components of the brain.
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B
Yes. Coming to view the conscious human being as. As a brain to be interfered with in some way, rather than a whole human who's living in the context of their life that, you know, has social, spiritual, you know, vocational. There's so many aspects of the human now. It was much more about kind of reducing the complexity of human suffering to just brain chemistry and. And inter, you know, interventions on the brain. And even the language itself evolved over this time. And in, you know, earlier versions of the Diagnostic and Statistical Manual, these diagnoses were called reactions. Of course, the word reaction implies a context. You are reacting to something that's happened to you or around you. In a later version of the dsm around this time, that psychiatry was trying to really rebrand itself as a medical enterprise. They changed the word reaction to disorder and left the context to the side. And this new language, this medicalized language of disorder, disease, illness, and to this day, we see it, it's become the kind of dominant way we think about these experiences.
- [27:06]
A
So you're at McLean, right? And I think McLean was where you had met another young man who just had an episode. Hearing about his story was just so heartbreaking because he, you know, his girlfriend cheated on him, he had a moment, thought about committing suicide or was about to commit suicide, and then was institutionalized. And he was subjected to electric shock therapy or electric shock treatment. And I was just so struck because again, you did such intensive research in just understanding the fact that it's not actually proven to be effective.
- [27:43]
B
Yeah, yeah. And when I'm realizing this hospitalization, my first one was actually at New York Presbyterian. McLean was. And no, it's. I'm like, sorry, it just occurred to me. I'm like, wait a minute. Yeah, but so New York Presbyterian and. Yes. So ECT is what we call it today. Electroconvulsive therapy is a very widely used intervention, especially for people who've been deemed treatment resistant. And so, you know, maybe you try a few antidepressants, and if they don't help, then oftentimes ECT will be recommended. And what I learned in researching in the years after I came off of all of these meds many years later, was that this treatment that is talked about at places like McLean as this, it's been around for a long time. It's not like it was and One Flew over the Cuckoo's Nest days, it's safe, it's effective. Actually, if you look at what evidence base does exist for ect? It's at best limited. And just one interesting fact that shocked me when I, gosh, no pun intended, when I learned it was that ECT was grandfathered in. When the medical device kind of regulatory mechanism was put in place in the, in the 70s, it was, it was already in existence as a treatment. So it was grandfathered in without needing to show any trials for safety or effectiveness. And the FDA basically said, we're going to allow you to get this classification, but it's a, it's a high risk classification and you need to prove to us now that this is a safe and effective treatment. And to this day they still haven't actually submitted any trials to the FDA to show it. And so this is just one of, kind of many examples of how the treatments we take for granted within psychiatry are safe and effective. When you actually look at the evidence base and the history of them, you realize like, oh my goodness, all is not as I took for granted that it was.
- [29:48]
A
Well, when you mentioned that when you were 14 or a teenager and you were prescribed Prozac and Depakote and that they were not at that time cleared to be prescribed to children, how was the doctor able to prescribe it to you then?
- [30:03]
B
That's a great question.
- [30:04]
A
It's an off label prescription or something. And I wasn't. Can you explain that?
- [30:08]
B
Yeah, yeah. So off label prescribing is totally legal. So doctors are given the freedom to make their own clinical decisions about what treatments to give their patients and they are free to use treatments off label. Drug companies are not allowed to market drugs for uses that they aren't approved for. And there have been many billion dollar fines, you know, levied against drug companies for illegal marketing. But doctors, it was perfectly legal for my doctors to do that. And you know, even, even though Prozac, for example, is now approved for, for use in children, that still, if you actually dig into the studies that drug companies submit to the FDA for, for all of these drugs, you realize that isn't even necessarily saying that much. Just because it has now actually been approved for this use. What that actually means is not necessarily what you think. And just as an example, I, and so many people out there take these medications for years, years at a time. I was on them, I thought I was told I'd need them for the rest of my life. The average length of a psychiatric drug trial, you know, a trial to assess the safety and effectiveness of a psychiatric drug is six to eight weeks. Yeah, that's it. Some Trials last a day. And one of the trials that was submitted for Ambien, for example, was a one night trial. You know, they last a few weeks. Sometimes they, and they're all based, the outcomes are based completely on subjective rating scales that are often delivered by a clinician. So, for example, you'd sit in front of me if I'm assessing how you're doing on a, you know, on a scale of 1 to 4, you know, have you been in the past week, have you, you know, been like very agitated? Slightly agitated? It's just, it's not what we often assume it is that there must be something objective going on here and it's rigorous scientific research. No, it's just basically the opinions of individual clinicians and researchers who are imposing their own personal, subjective interpretations on someone and then that's being called evidence. And I never thought about any of this when I was on these meds. It never occurred to me to unpack the story behind them. I just assumed if it's safe and effective because, you know, it must be if the FDA says it is.
- [32:42]
A
Yeah. And I, you know, I think just the fact that you mentioned also too in the book that the pharmaceutical companies often are, they're doing their own studies.
- [32:55]
B
Right.
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A
And they're submitting them to the fda, but they often just submit the ones that show what they want the outcome to be. Right and are not. There's no sort of, it seems like there's no policy or law around having to disclose every single study that they did.
- [33:14]
B
Yeah, I mean, I don't even fully understand how that specific aspect works in terms of new drug applications. I think include multiple studies, but only a small handful actually are considered. It's that whole aspect of drug approval, you know, isn't something that I'm deeply informed about. But what I did learn that is just as shocking is that drug companies, there's so many kind of tricks and games that drug companies will play to massage the data to, to change parameters mid trial. You know, one example is there's a method called, I can't even remember the exact wording of it at this point. I talk about it in the book, but they will start all people on placebo. Placebo run in. That's what it's called, run in phase. So in some drug studies, they'll start all people on a placebo and then they assess which participants feel better on the placebo and then they remove them from the trial. Because presumably when they then compare the drug with the placebo group down the line, the people in the placebo group will have poor, a poorer response. So the drug will look better.
- [34:29]
A
Right.
- [34:29]
B
So they're all these. That's just one of all different kinds of tricks that drug companies play. And again, it takes a lot of time to kind of inform oneself about this. And most people don't think to go on this research quest. And it took me years and I still feel like I've barely scratched the surface of understanding, just like how kind of corrupted and captured this whole enterprise really is.
- [34:56]
A
Well, I was, you know, when you were, I think you were prescribed, I forget which. Whether it was an SSRI or maybe it was the first one.
- [35:05]
B
The mood stable, the Depakote.
- [35:07]
A
Depakote. And then you were having sleepless. You were sleepless, having sleeplessness. You were prescribed Ambien. Then you were groggy in the morning. So you were prescribed Provergil, which is a sort of like a speed, essentially.
- [35:21]
B
I was on an insomnia drug at night and a narcoleptic drug during the day.
- [35:29]
A
I, after my daughter will be 20 in October and my doctor had me come back two weeks later. This is my OB GYN. And she said, how are things going? And I burst into tears. And she said, you know, I think you should, you, you could be suffering from postpartum. I'm going to put you on an ssri. And I was so just, I was exhausted, sort of like, whatever, whatever you think, if that's going to help. Sure. And I was put on Wellbutrin and I was on it for maybe six months. I felt terrible on it. And when reading your book, first of all, the withdrawal was awful and it didn't really solve the problem for me. When I was reading your book, I thought, gosh, if I'd gone, if I was not with an OB gyn, which, I mean, even having your ob GYN prescribed, you know, I don't even know, you know, I think that they do just very common. Just. Yeah, right. Just to, you know, in her. Obviously her attention, intentions were, were great and thoughtful. She was trying to help address that concern. But if her response had been, gosh, oh, you're feeling dizzy, let me give you this drug. Or just, you know, I just can't imagine where I would have gone from there because of sort of how unlike myself I felt when I was on it. And then about five years ago, I'm 51, so it's my mid-40s, I was having terrible, you know, kind of ups and down mood swings and things. And I went to my same ob gyn. I said, I, I don't know what's wrong with me, but about 10 days out of the month I just don't feel myself like myself. I feel depressed. I feel. And she said, you know, maybe you should go on and maybe you have premenstrual dysphoric disorder. Maybe you should go to an ssri. So she put me on Prozac. I love Prozac. I've been on Prozac for five years. However, I interviewed someone for the podcast about menopause and perimenopause. She said, oh, you know, mood swings and depression and you need hormone replacement therapy. And I thought, huh, I was, I'm quite certain now looking back and I am on hormone replacement and I'm still taking an SSRI because I'm sort of like, but it's been five years and I'm thinking to myself, you know, it's just interesting sort of, you know, that's why I asked you about the puberty component and sort of adolescence in that early that while my doctor is so well intentioned and, and I did get great relief from the ssri and that is one of these doctors specializes in menopause. Was talking through with me that that is sometimes an option in addition to hormone replacement. But I, anyway, it's just interesting. There's so many other factors to look at sometimes and your doctor, you know, might just be looking at one and not as holistically.
- [38:11]
B
Totally. Well, and what's.
- [38:13]
A
What I'm.
- [38:13]
B
What I'm thinking about as you, as you speak is that with your Wellbutrin experience, you had a baseline to compare how you felt to you like you said, for six months I didn't feel like myself. And you had so something in you was able to notice that change and, and recognize it and say, okay, this isn't. Yeah, me. And I think that is part of why the issue of medicating children I think is so Is such a serious one for us to be talking about as a society. Because I didn't have a baseline sense of myself as a kid. As a kid you don't. Especially when you're hitting puberty.
- [38:52]
A
Right.
- [38:53]
B
And so in retrospect I, it's so obvious to me now all the ways that those, those meds actually were harming me then, but because I wasn't able to compare it to who I was previously because I had never been an adolescent or an adult before. I had no adult and especially through my 20s because I'd never been unmedicated as an adult. I think that, that inability to have perspective, to have something to compare your. Your experience to can be really distorting for people. And, and yeah, I think to your point about, you know, where you're at today with things, it's like, you know, I do think Western medicine does have a tendency to compartmentalize, and sometimes that works out just fine. Like, like you said, you're. You feel really good on the, the meds that you're on now, but it is, it is. There's always a big story to, to, you know, because. Because again, we live in context. We are. We are also social, spiritual, cultural beings. And when we struggle in. In our life, it's like there's always. There's always a story behind why. And, and even if meds end up being the right choice for someone, it's. It's always more complicated. And like, having that broader context, I think can help. It certainly helps me now as I navigate, you know, my 40s and having a son and a stepson and having that context to remind me when I'm coming up against a hard patch and I'm tired and I'm irritable and I'm angry. It's like I just remind myself, like, this is. This life is complicated.
- [40:36]
A
Yeah. Oh, I mean, 100%. But let's talk. So you had a very difficult time in Maine where you had attempted suicide. You end up in the. In a coma in the hospital. And then your journey from there, you end up going through different treatments again in the hospital or in a facility, and then you're having some outpatient therapy. I think you're in Vermont. You walk into a bookstore. Tell us what happens.
- [41:10]
B
Yeah. So to give quick context, so that, that choice I made to kill myself in my mid-20s came because from basically freshman year of Harvard on, the more invested I became in being a psychiatric patient, the more my life fell apart. And just my ability to take care of myself, my physical health, my relationships, my capacity to work and be a productive member of society just fell more and more and more apart. And eventually, in my mid-20s, I was told that the reason this was happening was because I was just so seriously mentally ill that now I had treatment resistant illness. And that message to me just tamped it. It put out the last of any hope I might have had because I believed so deeply in this story that the only thing that could help me live my life was treatment. And now you're telling me I'm so, so defective that even the treatment won't help me. And so that hopelessness was really what led me to decide to kill myself.
- [42:15]
A
And I mean I, I, I, to me that's, it's just so, it's so heartbreaking, but it's so understandable if you feel like you, yep, you're going to be living in this just, just this pain and there's no relief.
- [42:29]
B
Yep. It was a logical conclusion to draw given the story I was believing about myself. And, and that story was false, of course, and I just didn't know it then. And so to skip forward to the period of time you're asking about when you know, so this was two years later, nothing really had changed. I was still in treatment all the time and, but not being helped by the treatment and dependent on my parents on like totally not able to function in my life at all. And I ended up getting permission from my treatment team to go to Vermont to see my sister play a special lacrosse game. And I was in this bookstore and I saw this book on, on the shelf with this interesting cover that had all these different psychiatric drug names in, you know, in the different compartments of a phrenology head, one of those old illustrations of a human skull. And I was like, oh, I've been on almost all of these drugs, I wonder what this book's about. And I, I didn't even really know, you know, I didn't even read the description really. I just bought the book and I began to read it. And in a nutshell, the author, Robert Whitaker, and the name of the book is Anatomy of an Epidemic. He'd set out to figure out why the long term outcomes for people diagnosed with schizophrenia are so much poorer in the US and the western world than in, in, you know, developing countries. Because you know, his, his understanding had been that we had all these sophisticated psychiatric treatments here, so why are our outcomes worse? And when he did this deep investigation into the evidence base for the long term use of these drugs, what he concluded, and it's the thesis of his book, is that if you actually look at the, what data does exist, it's, it's painting a pretty compelling picture that long term use on the whole is making us collectively sicker, more disabled, more dysfunctional, more mentally ill, so to speak. And so there I was on 5 meds, reading, reading this and thinking back on how my life had just fallen completely apart in the years that I was on all this treatment. And it clicked in this aha moment. Holy cow. What if it's not treatment resistant mental illness? What if it's the treatment and that shifted, that just changed everything for Me, I couldn't unthink that. I. I couldn't. And it was a terrifying prospect to consider because it basically meant that if. If this was true, that my life didn't have to have gone this way.
- [45:10]
A
Right.
- [45:11]
B
But it also gave me hope at a possibility of another life besides psych wards and meds or suicide. And so that. That was back in 2010. And ever since, you know, I've been on this journey away from. Again from psychiatrization, and. And. And, you know, I quickly realized if I'm gonna actually give myself a chance here, I have to come off of these. These meds. I have to see who I would be off of them. And that curiosity, I think, is what. What drove me through all the fear and all the uncertainty. And.
- [45:49]
A
And you started slowly sort of weaning yourself off one by one. But what are you replacing that support with?
- [45:58]
B
That's a good question. Yeah. Well, and. And I didn't actually.
- [46:01]
A
Support's the wrong word, but. Are you in therapy? Is it. Is it meditation? Is it religion? Is it mindfulness? Sort of. How do you. Because you mentioned life is hard and we all sort of go through ups and downs and. Or do you just sort of look at things differently?
- [46:16]
B
It's a good question. Well, and. And so the few years after I decided to come off. So I just want to, like, kind of focus on those for a minute. Yeah. Because I didn't actually come off slowly because I didn't know at the time that being on these drugs for weeks, months, years, meant that my brain had become physically dependent on them. Because I wasn't told this. And really none of us are being told this, that. That using any psychiatric drug, any depressant, mood stabilizer, benzodiazepine, any of them, if you take them regularly for more than a few weeks, you. You. You may well become physically dependent. It's not addiction in the sense that you're craving a fix or anything like that. It's purely physiological. And so because I didn't know that, I didn't understand that it was important to taper slowly. So I came off of 5 meds in about half a year, which is basically cold turkey. And it was through surviving withdrawal because, you know, that's what ends up happening to people. And I think it's a big part of why so many people stay on these meds long term is that when you decide you don't want to take your med anymore, you. You either stop it abruptly or maybe you cut it in half for a couple of weeks. And then you stop and then you feel horrible.
- [47:35]
A
Yep.
- [47:36]
B
And then you're told you're having a relapse of your illness. This is why you need to go back on your meds. And so people get stuck in this revolving door of recognizing that they don't like how they feel when they don't take their meds, but thinking that means that's why they need their meds, not realizing, oh, actually if I tapered much more slowly, it might look different. And by slow, I don't mean weeks or months. Some people need years of tapering years to get off in a way that minimizes withdrawal symptoms. It's, it's wild.
- [48:11]
A
How long is that person by person, or is it based sort of on how long you've been on a drug?
- [48:16]
B
That's a good question. And there's so little research, there's no research basically into any of this, so it's all kind of theoretical. But there does seem to be a correlation between the length of time you're on a drug and how hard it is to come off of it. But some people are only on these drugs for weeks and then ended up end up having a really hard time getting off. And some people can be on them long term and not actually have many problems coming off. It's very much a black box of understanding. But in the work that I do through Inner Compass initiative and through my, this one, the one on one and group support work I do, what we say is that if you want to do this in a way that really minimizes the risk of debilitating withdrawal symptoms, start out going really, really, really slow. By slow I mean you know, 10% a month, 5% a month, even like that, that tiny. So you can get a sense of how your body's doing and then maybe you can end up going a little faster. But if people cut too much too fast up front, they might get destabilized and then it could take a long time to, to restabilize.
- [49:20]
A
So you, in your own experience, so you, your tapering you felt was too fast, but once you were finally off of the drugs, what, what, what did this look like?
- [49:32]
B
Yeah, and, and to get to your really important question about how did I actually. Yeah. What did I do instead? I mean, it took a few years to really recover from the withdrawal and from the adverse, the long term adverse effects. But what I'm so grateful for is that very early on I had quit drinking alcohol as well. And, and I ended up getting involved in, in the 12 step world. And so I Had access to that community. And perhaps most importantly, AA helped me connect with being of service, really with the opportunity to get out of myself and be there for someone else. And growing up in therapy, I've become quite narcissistic. Week after week, year after year, just thinking about myself and talking about my problems and prioritizing how I was feeling all the time. I was, I was really self obsessed. And AA helped me connect with just how powerful it is to get out of yourself and be there for someone else. So I think that being of service was huge. And a lot of what helped me was letting go of this idea that my suffering was a sign that I was sick and instead kind of recontextualizing my struggles and seeing them again as responses to what was happening in my life, what had happened to me, even to how I was taking care of myself, diet, you know, sunlight, community. And by letting go of this medicalized self understanding, by letting go of this idea that I was sick, it helped me let go of all this fear that I'd have had of my pain of, you know, that I'd spent years being driven by. Oh my gosh, my symptoms are increasing. I should call my doctor, I should up my med, I should check myself in. I was so afraid of myself and my mind and my pain. And now I realized, oh my gosh, if my pain is actually communicating something to me about my life, I need to listen to it and, and, and hear what it's actually telling me.
- [51:44]
A
Give us an example. So would you, let's say you're sort of thinking, gosh, I feel down, I'm having it. Would you then look at that and say, what's going on in my life? I need to go for a walk, I need to be in sunlight, I need to reconnect with an old friend. Is that how when you talk about sort of reconceptualizing, and I love how you describe in your book, sort of reconciling with the fact that this is partially about being human.
- [52:09]
B
Yes. Yep. Yeah. I mean, and sometimes it is really obvious, like just to kind of talk about where, how I am living my life today. I had a baby four and a half years ago. I was writing a book at the same time I was trying to run this nonprofit that now my husband runs. And I was just so stressed. I was sleep deprived, I was depleted. And so to this day, I'm still in this chapter of my life where I'm irritable and I'm drained and I'm impatient and I can get Totally overwhelmed by stress and my, and my anxiety can completely consume me. And then I'm basically a maniac. And if my poor, poor husband, God bless him, like, it hangs in there with me. But I, I'm just so aware of the why I'm so. It's so obvious to me. And, and because I'm not, because I'm not afraid of it, and because I've just found this capacity to trust in myself and in my own process over these past 15 years, I'm like, you know what? This is just a hard life chapter. And it feels really painful a lot of the time. And you know, maybe some days I'm like, I'm able to force myself outside for a walk, but a lot of days I'm not a lot of days, right. I'm not making choices that help me feel better, but I'm okay with that because. Because it's, it's just a temporary chapter of my life and I will find my way through it. You know, sometimes it is more mysterious. And I do think a lot of people, especially women, girls and women, like, we feel intensely. We're still sensitive beings. We are evolutionarily designed to be aware of our surroundings and to kind of read each other emotionally because, you know, evolutionarily we were tending the hearth, we were caring for children. It's built into our, our DNA. And so I do think sometimes the pain I, the emotional pain I feel isn't like, oh, I just need more exercise. It's just what it is to be human, what it is to be a woman, what it is to be a mother.
- [54:10]
A
Well, and also the hormonal piece, obviously we touched on that and that sort of, that correlation between that and mental health, which I've learned a lot about as like, you know, talking to other people for the podcast or what I'm reading about being perimenopausal, which is when I made that link between that and my own sort of moodiness and depression in my mid-40s, around which I now realize is, was probably perimenopause or is still perimenopause. But let's talk about the Inner Compass initiative though, because that's the work that you're doing now. And I loved how you sort of came out of that and decided I'm going to, whether it's through your 12 step recovery process, recognizing that being out of yourself and helping others is a way to lift yourself up and lift yourself out. So tell us you got started. Tell us about this wonderful organization that you founded in the work that you're doing.
- [55:00]
B
So back in 2018, I had the opportunity to launch this nonprofit and I knew that what I'd been through was far from unique to me. I knew that I was not an exception here. That many, many people found themselves in this situation of realizing long term meds isn't working anymore, or maybe it has never worked. But where did they have to turn to get good information, to connect with other people who'd been through that process to learn how to taper safely. So I started this non profit to help meet that unmet need. And we provide a lot of information and resources about the diagnoses, about the drugs themselves, about how drugs are researched and brought to market, about these kind of subjective rating scales that are used to diagnose you just so that people can have that information, not to say don't take meds or get a diagnosis, but so that you can actually have the full picture so that you can then decide if that makes sense for you. And I think perhaps most importantly, you know, the, the helping people connect with one another. Because of my experience in aa and I did end up leaving aa, but I hold a fond place for it in my heart. I think helping, helping people connect with the power that they have to help themselves and each other in authentic relationships free from the exchange of a service, you know, a therapeutic service, which can be really helpful. But there's also more beyond that. Help doesn't necessarily need to come from a professional all the time. Sometimes it can come from your neighbor, your friend, your family member, and especially when that person has been through their own struggle.
- [56:43]
A
Which you, I guess you learned that from that. From la. From LA A.
- [56:47]
B
Exactly.
- [56:48]
A
That model.
- [56:48]
B
Right, exactly. That my struggle had meaning that I could take what I'd been through and use it to help someone else. And, and ICI in our compass, we, we, so we have a mutual aid community and people, people, our community members lead groups and, and people support one another and also just share about the journey off of these meds, the journey away from these diagnoses for people who decide that's what's right for them. We also have a manual, a step by step self directed tapering manual. Because unfortunately right now this, there are no official protocols. The American Psychiatric association doesn't even really acknowledge that dependence and withdrawal are a thing. Officially the only place people can really turn for safe information on tapering is other lay people who've figured out how to taper themselves. So we provide all that information for free. And yeah, we're doing a lot this year. We're expanding the scope of what we're doing to help inform our culture more broadly, even maybe policy. We recognize that we need to proactively get out there and try to help inform doctors and guild organizations and legislators about these issues, because 1 in 4American adults is on a psychiatric drug right now, and 1 in 10 kids, this is a massive, massive issue.
- [58:21]
A
And I was also struck, you know, you mentioned that on your website, you do have sort of information about how these drugs are brought to market. And I was really shocked by some of these studies of SSRI is being on one, you know, how the placebo, the effects of placebo versus the ssri, the efficacy is not that different.
- [58:40]
B
Yeah.
- [58:41]
A
And then also the relationship between some doctors and pharmaceutical companies. I hate to be sort of, you know, wearing a tinfoil hat on that one, but, you know, or conspiratorial, but it, but there's real evidence there and there's been real lawsuits and investigations into doctors that Harvard researcherman.
- [59:00]
B
Yeah.
- [59:00]
A
Biederman, who was taking in millions from pharmaceutical companies and then advocating for certain drugs. So I really, I was going to ask you what's next for you and Inner Compass, and I love that you're thinking about pursuing the policy piece because I think, you know, all of us want to be more informed about the decisions that we're making about our health and about the health of our children. So I applaud you so much for the work that you're doing and I'm just so really just admire you for your journey. And your book Unshrunk is a terrific read. Really inspiring and as I mentioned, heartbreaking in the beginning, but so inspiring how you, you turned your experience into, you know, an example for others and a way to help others. And thank you so much, Laura, for being on.
- [59:46]
B
Oh, thanks for having me, Leslie. It's been so nice chatting with you.
- [59:48]
A
Same here. That brings us to the end of this episode of Duologue. Huge thank you to Laura Delano for joining and sharing her really inspiring story. If you enjoyed this episode, please rate or review us on Apple Podcasts or Spotify or wherever you get your podcasts. Also, a big shout out to our sponsor, Cozy Earth. You can check out all of their amazing products on their website, cozyearth.com and don't forget to use the promo code Duologue at checkout for an additional 20% off. And as always, thank you all listeners for listening and for all your support. We've got another new episode coming out next Wednesday, so until then, this is Leslie, and thanks for listening to Duolog.