“We need to approach anorexia with more humility"
My career did not start in the clinical research space, but from a young age, I’ve always had a deep love and appreciation for medicine.
When I was eight, my best friend in the world was accidentally shot in the head with a BB gun that ricocheted. She was determined to be dead on arrival and taken to the hospital to harvest her organs. But when they arrived at the hospital, the neurosurgeon said she had a 0.5% chance to live. So they hooked her up to advanced life support (ALS). Months later, she woke up, and she's recovered as much as you can expect from a situation like that. I was so relieved. It was truly transformative for me. I knew then that I just had to pursue a career in healthcare.
My father was also an EMT and my stepmother was a critical care nurse. I’d go on calls with my dad sometimes, and when we were allowed, we’d kind of follow the patients through their journey, from the field to discharge. I was just really enamored by the effort of all the people involved, on behalf of total strangers. So all through high school and early into college I volunteered at my local hospital. I set a record for volunteer hours in high school…I was just obsessed, you know? And then because of my connections, I was lucky and got to work with the neurosurgeons there. I was so sure that that’s what I wanted to do for my entire career.
But when anorexia entered my life, it changed my course in many ways. I had a certain path in mind since I was eight years old, but my disease totally derailed that. At the time, it was devastating. But in retrospect, I’m really grateful for it. Because it opened up other doors for me.
Before I dive too far into this conversation, I’d like to make it clear that my expertise and my role as an advisor in the research and treatment of anorexia is based solely on my personal experience with a very restrictive anorexia nervosa. I never branched out into any other eating disorder, which is fairly rare, and I am not a medical professional. So I like to be very clear about my journey and my knowledge base. I’d also like to express my gratitude for those who work in this space.
Anorexia is a monster.
Out of the millions who suffer from anorexia, nearly a third of them die, a third have some sort of shadow of a life - where they are just tortured for the rest of their lives - and a third of them recover to the extent that might feel like a life is worth living. But it requires constant effort.
For me, a huge part of my struggle was not being taken seriously. I had some interesting forces in my life. My Dad is a diagnosed narcissistic sociopath, so that dynamic was extremely challenging. I’m going to make a very big claim here, but I think for young women, society can show up a little bit in that way as well. So I felt like I had it in my home, and I had it in society, and I was also part of a very bizarre and extremely strict religion. So I had these three pillars that were all saying the same thing to me. And I happened to be a highly competent, highly capable, highly accomplished young woman with all of these forces closing in on me. So more than anything else, I just wanted space. And that’s what I speak to in my book—that the answer is space. The answer is self-directed individuation. I never would have gotten well if I hadn’t created space. And I also never would have stayed well without it either.
There’s this quote from my book that rattles around in my brain a lot: stability without freedom is tyranny. I had this realization in my early twenties, where I knew I had such remarkable structure my entire life, but I started to want nothing to do with it. I wanted nothing to do with standard societal expectations. They weren't serving me and I didn’t care if it disappointed anyone. I even stopped working in the health space for a while. Instead I was a professional chef, I taught yoga, and I just did exactly as I wanted. I started to find my own rituals. It’s all simple stuff, but it provides powerful psychological safety for me and really fulfills me. Sometimes my rituals will take me hours down an unexpected direction and that’s fine. Because my rituals are not the same thing as rigidity. They are just things I know I can really count on to help me feel centered and alive.
Anorexia remains the deadliest mental health disorder.
Anorexia was first identified a millennia ago in different ways, and was actually considered a version of witchcraft. A lot of the Salem witches were anorectics. Historically, it was seen as some sort of superpower. Like, what do you mean you can starve yourself into this sort of ethereal being? You can imagine in the Middle Ages that it was seen as some sort of almost demonic possession, sorcery kind of thing. So it has this very tainted history, where the person herself (and 9 times out of 10 it is herself) is suffering significantly, and also bearing the burden of the irrational criticism and judgment placed on her. This suffering continued for a long time into the 20th century and still has a legacy today.
Anorexia was the first eating disorder identified in the first DSM (Diagnostic and Statistical Manual of Mental Disorders) of 1952, which is psychiatry’s way of saying that anorexia is a real thing, it has criteria and can be diagnosed, and thus we can research it and put money behind it. The DSM eventually expanded to contain other eating disorders, yet anorexia remains exactly as it was back then: the deadliest mental health disorder. It has essentially the same lifetime prevalence as schizophrenia, but a two to five times higher mortality rate and very little visibility or research being done.
This stuns people, because you’d think it’d be common knowledge…that something that exceptional in its mortality would surely be a bigger conversation, right? We hear a lot more about mental illness in today’s world. But I think we should throw gazillions more dollars and a lot more publicity behind all mental illnesses, right? The entire pie needs to grow.
These illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
In my book, I argue that what we really need to think more about is how young women are the ones who are primarily affected…and what that means about our society more broadly. When your brain throws your thoughts and behaviors into pathology and there is no obvious way to stop that train, it’s very, very devastating, and very, very challenging. There’s so much work to be done to demarginalize that experience, instill real hope in the people who are suffering, and help them absolutely understand that these illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
This is the lens through which I look at our current research paradigms. Because research has backpedaled a lot in anorexia. Everything that’s ever been thrown at anorexia pharmacologically - and I mean everything, without exception - has failed. I think it’s one of the only mental illnesses without any drug approved pharmacologically to treat it. Which is rare and strange.
The only therapy for anorexia that has benefited patients with discernible outcomes is family-based therapy. And there are probably really clear reasons why family-based therapy tends to work better than anything else. But it’s a tricky thing to assume that the only thing that might help you is a type of therapy that might be very difficult to access. Not all people with severe mental illness have a full family support system. So the likelihood of getting into that therapy in a meaningful way with your family is probably fairly slim.
It’s all too easy to blame social media.
When I was going through anorexia, there was no treatment at all. My small town hadn’t discovered family-based therapy, and frankly, given my family, that would have never happened anyway. There was no viable treatment, nothing I could turn to. Nothing to give me even the slightest bit of hope. To this day, we still lack an understanding of the social influence relevant to anorexia. If anything, we are actually starting to misunderstand it.
Social media is a good example of this. The conversation seems to be heading in a direction where social media is considered a cause of anorexia. But this is wrong. Social media can certainly open the door to eating disorders to those who perhaps have the propensity for it but haven’t yet been triggered, but it is not the cause. For society in general, social media intensifies the experience of our social expectations, and it intensifies the desire to approach these often irrational and unattainable expectations with sincerity. This turns into perfectionism, which is a hallmark of anorexia. But…I had no access to social media when I was ill. I had no cell phone, and I still nearly died.
It’s all too easy to blame social media, and if we do, we’ll never find the solution.
We need to get to the root of the problem.
When you look at people with anorexia who spend months in treatment, and you really try to see things from their perspective, you’ll see that they probably think things like, “Okay, I’m not going to die of cardiac arrest tomorrow. My electrolytes are in a good enough balance, so my heart’s not going to misfire.” And this is a critical first step for sure, because the physical impact is what you’ll die from. But my argument when it comes to anorexia - and really any mental illness that has a profound physical effect - is that while medicine does a pretty good job at solving a physical problem, this still isn’t getting to the root of the problem. Because in fact, once you’ve solved the physical parts of the illness, what you’ve actually done is complicate the problem. And this is okay…we must complicate the problem. But we have to think about the girl in her own mind now. You’ve added a significant amount of weight to her body, so the voice that destroys her, moment by moment, just got louder…because you’ve done the thing it doesn’t want you to do. She’s in a worse psychological position than she was before. These are the psychological underpinnings that can’t be solved by only addressing the physicality of the disease. Neglecting this is likely why the relapse rate of anorexia is very high.
Ultimately, the psychology behind anorexia is not understood well enough yet. And no one - not even clinicians - will talk about things they don’t know or understand well. So what ends up happening is that we just never address it. And that’s where I issue a call-to-action to the industry: Let’s listen to those who have been through it. Do I have all the answers? Of course not. Not even close. But I’m here and I’m highly functioning, and if you knew my story, you’d be blown away by that. So it's got to be an experience worth paying attention to, right?
When I met the COMPASS founders and learned that they were coming for anorexia - which felt like the third rail - it was very moving.
In my late twenties, I reconnected with my love for medicine. I worked for Forest Pharmaceuticals (now Allergan) and later Sanofi, with visibility to both the non-clinical side and R&D side. Eventually I found that I started to love R&D more, because it felt like everything we were doing on the commercial side was born from the research side. I also worked in health tech for a brief period of time, to become more savvy in that sector and how it intersects with clinical trials.
From there I discovered CNS Summit, founded by Dr. Amir Kalali, who had previously served as the Global Head of the Neuroscience Center of Excellence at Quintiles for 20 years. I met Dr. Kalali at the release of the DSM-V in 2013, and we struck up a great friendship and professional collaboration around the Summit. I became a sort of volunteer 'Chief of Staff' onsite for Summit for many years and now am the Managing Director, Head of Community Partnerships. It was here where I really started to immerse myself more in the clinical research space. I’ve gotten to know this world so much better, and have really tried to marinate in as much knowledge as I can.
It was through CNS Summit in 2018 that I met the two founders of COMPASS Pathways, the entity I now work with as an advisor to their clinical trials in anorexia. The current approaches to anorexia have never produced a positive outcome epidemiologically, with the exception of family-based therapy, which is of course not something that can be patented. So when I met the COMPASS founders and learned that they were coming for anorexia using the patient’s subjective experience - which felt like the third rail - it was very moving.
At Summit, one of the founders of COMPASS, Ekaterina Malievskaia, MD, was talking about her company’s approach to mental illness treatment, where they integrate the patient’s subjective experience as an endpoint with the FDA. And it just struck me, because that’s so atypical and so, so remarkable. She mentioned that they were seeing positive results in using psilocybin for treatment-resistant depression and that they were eyeing anorexia nervosa next. I teared up in that moment. I thought to myself, they’re coming for anorexia from the perspective of the actual patient’s subjective experience on whether they feel meaningfully different or not from the treatment—versus me sitting in a chair with someone in a white coat and a pad of paper or computer saying “I deem you better!” That way just never quite resonated with me. So this idea that we’re going to really listen to patients and see if they think they’re having a better experience with their disorder…is just amazing.
I later had the chance to connect with Ekaterina to share my story. She ended up writing the prologue of my book, and invited me to have a voice at the table as they put together these trials, which was such a remarkable, unexpected and incredible honor.
The current measures used in eating disorders are antiquated.
The advisory committee for the clinical trial - of which I am just one very small part - addressed the question of whether the current measures used in eating disorders are antiquated. Because they drive home this idea that eating disorder behavior is a controlling behavior, which it’s not. That sounds like hysteria to me, and it’s something we really need to get away from. First, it’s incorrect. Second, it’s insulting. And third, it’s actually a barrier to treatment. Removing this verbiage from the eating disorder measures and replacing it with relevant verbiage that captures modern perspectives on the disorder is under consideration.
We’re all just really trying to understand anorexia better and differently, recognizing that if no progress has been made in any particular thing - despite the great minds that are working on it - maybe there’s something wrong with the core assumptions, or the axioms with which we’re working. So we’re looking to question those, and come at this illness with a more humble, open mind. How amazing would it be if a treatment like psilocybin, which is kind of just shaking up those neural pathways, could help break some of the cognitive rigidity and other things that often show up in anorexia and drive the very pathological behaviors?
Among many other remarkable researchers, COMPASS works with Dr. Walter Kaye out of UC San Diego, who’s doing brilliant work in this space. He’s really trying to understand the neurological structures in place, using brain imaging and genetics, and how these create different communication pathways in the anorectic brain. For example, the altered levels and behavior of dopamine receptors have been determined to be pre- and post-clinically remarkably different in the anorectic brain. This is helping us get to an understanding of what this disease actually is, and how its behaviors originate from a certain internal structure and communication process, as opposed to the antiquated view that the anorectic is just being “obstinate and controlling.” It’s very serious and important work.
COMPASS is also working with King’s College London, along with some other London-based entities, to explore the use of psilocybin as treatment. They have really pioneered this psychedelic space, studying psilocybin for treatment-resistant depression and PTSD. In many ways, they’ve laid the groundwork for other companies that are starting to explore treatments that were historically considered illicit drugs. They’ve done this work brilliantly, and their hearts are in the right place.
The Phase II trial in anorexia started earlier this year. It’s not a typical drug trial, as it’s a single dosing experience. And it’s not just a “trip.” There’s a fair amount of pre-work and preparation for the experience that’s done in a therapeutic way, where all variants are explored. The experience itself is supported during its entirety, with an extremely professional clinical staff and the clinicians themselves. And there’s a post-integration process as well. It’s a very deliberately designed process. I find it all to be so encouraging. More needs to be done in this space, and I deeply appreciate the COMPASS team for tackling this as-yet-unsolvable and deadly challenge. You can learn more about the trial here.
I truly cannot wait to see the data once it’s ready to be shared publicly.
I’ve never taken psilocybin myself. I’m interested in it, but of course I am nervous. I want to first have a better sense of how it impacts the anorectic mind. I truly cannot wait to see that data once it’s ready to be shared publicly. Because as I continue to learn and understand the process of psilocybin as a medication - and then I match that up with my understanding of my own psychological process - I can imagine it might be remarkably beneficial.
It’s interesting to think about, because, once you’ve found stable ground - which I am so grateful for - it feels really amazing. It’s frightening to imagine a life without it. But there’s really no such thing as 100% stability, right? Is that even a thing? So I’d be really interested in having an experience with this medication as a way to potentially help break down some of the daily challenges I still face. I can see how having something like psilocybin to stimulate my thought process - in a way that I could never on my own - would be incredibly beneficial. To just break out of those rutted, seemingly true thought patterns, and to have an experience that could be so different from the one I had believed to be true.
But, I don’t have a clear understanding yet of what the cost would be. At this stage of my healing, would it take something away from my structure or the foundation I’ve already set? I have created this functioning, viable life for myself. And it’s a life I love. But I can imagine for a younger person - someone in the throes of anorexia - well, I didn’t feel at that time like I had anything to lose. So I’d be most curious to understand their experience of it.
Moving from mental illness to mental health
I read a book earlier this year that was so beautiful and blew my mind in its humility and accountability toward patients. It’s called “Healing: Our Path From Mental Illness to Mental Health” by Dr. Thomas Insel, who served as the head of the National Institutes of Mental Health from 2000 to 2015. Dr. Insel’s daughter battled anorexia, and during that time, despite being the head of the NIMH, he felt like he had absolutely no idea where to turn that provided any measure of confidence. So that really says something, right? That it’s a system failure. Sure, there are treatment centers where patients can go, but they have zero data on their effectiveness or relapse rates. These programs tend to say a lot of words, but there seems to be no accountability to actually bringing someone from mental illness to mental health, and making sure they stay there.
He speaks about this explicitly in his book, and that in standard delivery healthcare across the board, and certainly in our clinical trials, we have these measures of accountability to the patient. We have incredible structures around that. But when it comes to psychiatry in practice, a lot of it evaporates. We’ve yet to even define what measures of accountability and expectations for success look like. And these are certainly conversations that should include the patient. He calls into question the places we’ve been looking for these answers, and that perhaps we should be looking through a more humanistic, quality of life perspective.
Dr. Insel opens the book with a really beautiful story. He was speaking at an event with other researchers about genetic research and biomarkers, and a gentleman in the back of the room yelled to the front of him, “You really don’t get it,” he said. “My 23-year-old son has schizophrenia. He has been hospitalized five times, made three suicide attempts, and now he is homeless. Our house is on fire and you are talking about the chemistry of the paint.”
Dr. Insel really listened to this person…realized he was right, and then went on to share this story widely…and I just adore him for that. Because yes, the chemistry of the paint is important and it is how we make progress, but we are neglecting the houses that are on fire. So we need to come at it in both ways: the research way and the humanist way.
Dr. Insel doesn’t claim this concept as his own. He works in a very community-centric way, and he cites a community-based mental health provider and community centers in California for really developing this idea of “people, place, purpose.”
People. We must recognize that people with mental illness are still humans - humans who are trying to have a life experience just like everyone else, with as much validity as anyone. They’re not less of anything. They are as human and as meaningful as everyone else, have all the same interests and desires as the rest of the world, and just want to live a life that they feel matters to them.
Connection is also huge. Health disorders across the board are so isolating. And I think with mental illness, it’s really exacerbated. Because with more “traditional” health disorders, like cancer, it’s so easy to show up for that, and most people want to. Let me be clear: not everyone who goes through a cancer journey experiences that. But broadly speaking, it feels relatively easier - emotionally and psychologically - to show up for someone with cancer, for example. But with mental health issues, like my grandfather and his schizophrenia, it’s very hard to show up for those things. Because you just don’t know what will happen. So mental illnesses are not only self-isolating, but also socially isolating, because we’ve yet to really create communities broadly that support serious mental illness. But we must find a way.
Place. Place is related to community and connection, but it’s also a recognition that a person can’t really show up for anything else in life until their basic needs are met. At the minimum, they need a comfortable and safe living space, and nutritious food.
Purpose. Purpose is something we all want, right? It’s so compelling and motivating, and it allows us to overcome so many other challenges. But with mental illness, you can lose your sense of purpose and direction, and you start to feel non-valuable to society. And then society reflects that back to you.
There needs to be a fair amount of humility and willingness to go deeper.
In terms of mental illness more broadly, I would love a future where it’s recognized as being fundamentally outside of the immediate control of the individual person, in terms of its onset and the behaviors it compels, and where it’s treated with respect and meaningfulness. We’ve started to talk more about it as a society, but we haven’t fully integrated it yet. We need to de-demonize mental illness and talk about it as the disorder that it is, the same way that we approach other illnesses outside the realm of mental health. Mental health issues have such a high mortality rate - often higher than other illnesses that we tend to take more seriously and put more resources toward. They deserve the same level of respect and seriousness. Using anorexia as an example, we’re not manipulative control freaks. That’s such a misogynistic perspective.
In the same way you don't want to see edema in a cardiac patient, you also don’t want to see psychological suffering in a depressed patient. We need to take the symptoms more seriously. And I would love to see more listening to the patient. In an area where we haven’t solved the problem, like with anorexia, there needs to be a fair amount of humility and willingness to go deeper to figure out what we don’t know, and recognize that the people going through it have something meaningful to share. And that’s why I was so excited to work with COMPASS, because their trial design is driven by actual patient benefit. And I think most people in this industry are driven by that, but doing it in a more explicit way, with much more frequent check-ins and holding ourselves accountable not to shareholders as much as to patients.
Ultimately, anorexia is a huge challenge for patients, for clinicians, and for researchers. But I just have this hope for the world to recognize that while it will take a tremendous amount of effort to make progress, it will be worth every bit of it. And that each person dealing with something like anorexia and other mental illness is charged with this colossal effort, in the direction of their own well being and their own creation of a life that they deem worth living. I like to remind myself and others that there's a better life to be had by devoting oneself to the journey toward mental health."
Keep scrolling to read Dawn's valuable advice for caregivers, below.
Dawn's Book
In Unrestricted: How I Stepped Off the Tightrope, Learned to Say No, and Silenced Anorexia, Dawn Brockett issues a call to action to change the way anorexia and anorectics are viewed and treated.
My career did not start in the clinical research space, but from a young age, I’ve always had a deep love and appreciation for medicine.
When I was eight, my best friend in the world was accidentally shot in the head with a BB gun that ricocheted. She was determined to be dead on arrival and taken to the hospital to harvest her organs. But when they arrived at the hospital, the neurosurgeon said she had a 0.5% chance to live. So they hooked her up to advanced life support (ALS). Months later, she woke up, and she's recovered as much as you can expect from a situation like that. I was so relieved. It was truly transformative for me. I knew then that I just had to pursue a career in healthcare.
My father was also an EMT and my stepmother was a critical care nurse. I’d go on calls with my dad sometimes, and when we were allowed, we’d kind of follow the patients through their journey, from the field to discharge. I was just really enamored by the effort of all the people involved, on behalf of total strangers. So all through high school and early into college I volunteered at my local hospital. I set a record for volunteer hours in high school…I was just obsessed, you know? And then because of my connections, I was lucky and got to work with the neurosurgeons there. I was so sure that that’s what I wanted to do for my entire career.
But when anorexia entered my life, it changed my course in many ways. I had a certain path in mind since I was eight years old, but my disease totally derailed that. At the time, it was devastating. But in retrospect, I’m really grateful for it. Because it opened up other doors for me.
Before I dive too far into this conversation, I’d like to make it clear that my expertise and my role as an advisor in the research and treatment of anorexia is based solely on my personal experience with a very restrictive anorexia nervosa. I never branched out into any other eating disorder, which is fairly rare, and I am not a medical professional. So I like to be very clear about my journey and my knowledge base. I’d also like to express my gratitude for those who work in this space.
Anorexia is a monster.
Out of the millions who suffer from anorexia, nearly a third of them die, a third have some sort of shadow of a life - where they are just tortured for the rest of their lives - and a third of them recover to the extent that might feel like a life is worth living. But it requires constant effort.
For me, a huge part of my struggle was not being taken seriously. I had some interesting forces in my life. My Dad is a diagnosed narcissistic sociopath, so that dynamic was extremely challenging. I’m going to make a very big claim here, but I think for young women, society can show up a little bit in that way as well. So I felt like I had it in my home, and I had it in society, and I was also part of a very bizarre and extremely strict religion. So I had these three pillars that were all saying the same thing to me. And I happened to be a highly competent, highly capable, highly accomplished young woman with all of these forces closing in on me. So more than anything else, I just wanted space. And that’s what I speak to in my book—that the answer is space. The answer is self-directed individuation. I never would have gotten well if I hadn’t created space. And I also never would have stayed well without it either.
There’s this quote from my book that rattles around in my brain a lot: stability without freedom is tyranny. I had this realization in my early twenties, where I knew I had such remarkable structure my entire life, but I started to want nothing to do with it. I wanted nothing to do with standard societal expectations. They weren't serving me and I didn’t care if it disappointed anyone. I even stopped working in the health space for a while. Instead I was a professional chef, I taught yoga, and I just did exactly as I wanted. I started to find my own rituals. It’s all simple stuff, but it provides powerful psychological safety for me and really fulfills me. Sometimes my rituals will take me hours down an unexpected direction and that’s fine. Because my rituals are not the same thing as rigidity. They are just things I know I can really count on to help me feel centered and alive.
Anorexia remains the deadliest mental health disorder.
Anorexia was first identified a millennia ago in different ways, and was actually considered a version of witchcraft. A lot of the Salem witches were anorectics. Historically, it was seen as some sort of superpower. Like, what do you mean you can starve yourself into this sort of ethereal being? You can imagine in the Middle Ages that it was seen as some sort of almost demonic possession, sorcery kind of thing. So it has this very tainted history, where the person herself (and 9 times out of 10 it is herself) is suffering significantly, and also bearing the burden of the irrational criticism and judgment placed on her. This suffering continued for a long time into the 20th century and still has a legacy today.
Anorexia was the first eating disorder identified in the first DSM (Diagnostic and Statistical Manual of Mental Disorders) of 1952, which is psychiatry’s way of saying that anorexia is a real thing, it has criteria and can be diagnosed, and thus we can research it and put money behind it. The DSM eventually expanded to contain other eating disorders, yet anorexia remains exactly as it was back then: the deadliest mental health disorder. It has essentially the same lifetime prevalence as schizophrenia, but a two to five times higher mortality rate and very little visibility or research being done.
This stuns people, because you’d think it’d be common knowledge…that something that exceptional in its mortality would surely be a bigger conversation, right? We hear a lot more about mental illness in today’s world. But I think we should throw gazillions more dollars and a lot more publicity behind all mental illnesses, right? The entire pie needs to grow.
These illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
In my book, I argue that what we really need to think more about is how young women are the ones who are primarily affected…and what that means about our society more broadly. When your brain throws your thoughts and behaviors into pathology and there is no obvious way to stop that train, it’s very, very devastating, and very, very challenging. There’s so much work to be done to demarginalize that experience, instill real hope in the people who are suffering, and help them absolutely understand that these illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
This is the lens through which I look at our current research paradigms. Because research has backpedaled a lot in anorexia. Everything that’s ever been thrown at anorexia pharmacologically - and I mean everything, without exception - has failed. I think it’s one of the only mental illnesses without any drug approved pharmacologically to treat it. Which is rare and strange.
The only therapy for anorexia that has benefited patients with discernible outcomes is family-based therapy. And there are probably really clear reasons why family-based therapy tends to work better than anything else. But it’s a tricky thing to assume that the only thing that might help you is a type of therapy that might be very difficult to access. Not all people with severe mental illness have a full family support system. So the likelihood of getting into that therapy in a meaningful way with your family is probably fairly slim.
It’s all too easy to blame social media.
When I was going through anorexia, there was no treatment at all. My small town hadn’t discovered family-based therapy, and frankly, given my family, that would have never happened anyway. There was no viable treatment, nothing I could turn to. Nothing to give me even the slightest bit of hope. To this day, we still lack an understanding of the social influence relevant to anorexia. If anything, we are actually starting to misunderstand it.
Social media is a good example of this. The conversation seems to be heading in a direction where social media is considered a cause of anorexia. But this is wrong. Social media can certainly open the door to eating disorders to those who perhaps have the propensity for it but haven’t yet been triggered, but it is not the cause. For society in general, social media intensifies the experience of our social expectations, and it intensifies the desire to approach these often irrational and unattainable expectations with sincerity. This turns into perfectionism, which is a hallmark of anorexia. But…I had no access to social media when I was ill. I had no cell phone, and I still nearly died.
It’s all too easy to blame social media, and if we do, we’ll never find the solution.
We need to get to the root of the problem.
When you look at people with anorexia who spend months in treatment, and you really try to see things from their perspective, you’ll see that they probably think things like, “Okay, I’m not going to die of cardiac arrest tomorrow. My electrolytes are in a good enough balance, so my heart’s not going to misfire.” And this is a critical first step for sure, because the physical impact is what you’ll die from. But my argument when it comes to anorexia - and really any mental illness that has a profound physical effect - is that while medicine does a pretty good job at solving a physical problem, this still isn’t getting to the root of the problem. Because in fact, once you’ve solved the physical parts of the illness, what you’ve actually done is complicate the problem. And this is okay…we must complicate the problem. But we have to think about the girl in her own mind now. You’ve added a significant amount of weight to her body, so the voice that destroys her, moment by moment, just got louder…because you’ve done the thing it doesn’t want you to do. She’s in a worse psychological position than she was before. These are the psychological underpinnings that can’t be solved by only addressing the physicality of the disease. Neglecting this is likely why the relapse rate of anorexia is very high.
Ultimately, the psychology behind anorexia is not understood well enough yet. And no one - not even clinicians - will talk about things they don’t know or understand well. So what ends up happening is that we just never address it. And that’s where I issue a call-to-action to the industry: Let’s listen to those who have been through it. Do I have all the answers? Of course not. Not even close. But I’m here and I’m highly functioning, and if you knew my story, you’d be blown away by that. So it's got to be an experience worth paying attention to, right?
When I met the COMPASS founders and learned that they were coming for anorexia - which felt like the third rail - it was very moving.
In my late twenties, I reconnected with my love for medicine. I worked for Forest Pharmaceuticals (now Allergan) and later Sanofi, with visibility to both the non-clinical side and R&D side. Eventually I found that I started to love R&D more, because it felt like everything we were doing on the commercial side was born from the research side. I also worked in health tech for a brief period of time, to become more savvy in that sector and how it intersects with clinical trials.
From there I discovered CNS Summit, founded by Dr. Amir Kalali, who had previously served as the Global Head of the Neuroscience Center of Excellence at Quintiles for 20 years. I met Dr. Kalali at the release of the DSM-V in 2013, and we struck up a great friendship and professional collaboration around the Summit. I became a sort of volunteer 'Chief of Staff' onsite for Summit for many years and now am the Managing Director, Head of Community Partnerships. It was here where I really started to immerse myself more in the clinical research space. I’ve gotten to know this world so much better, and have really tried to marinate in as much knowledge as I can.
It was through CNS Summit in 2018 that I met the two founders of COMPASS Pathways, the entity I now work with as an advisor to their clinical trials in anorexia. The current approaches to anorexia have never produced a positive outcome epidemiologically, with the exception of family-based therapy, which is of course not something that can be patented. So when I met the COMPASS founders and learned that they were coming for anorexia using the patient’s subjective experience - which felt like the third rail - it was very moving.
At Summit, one of the founders of COMPASS, Ekaterina Malievskaia, MD, was talking about her company’s approach to mental illness treatment, where they integrate the patient’s subjective experience as an endpoint with the FDA. And it just struck me, because that’s so atypical and so, so remarkable. She mentioned that they were seeing positive results in using psilocybin for treatment-resistant depression and that they were eyeing anorexia nervosa next. I teared up in that moment. I thought to myself, they’re coming for anorexia from the perspective of the actual patient’s subjective experience on whether they feel meaningfully different or not from the treatment—versus me sitting in a chair with someone in a white coat and a pad of paper or computer saying “I deem you better!” That way just never quite resonated with me. So this idea that we’re going to really listen to patients and see if they think they’re having a better experience with their disorder…is just amazing.
I later had the chance to connect with Ekaterina to share my story. She ended up writing the prologue of my book, and invited me to have a voice at the table as they put together these trials, which was such a remarkable, unexpected and incredible honor.
The current measures used in eating disorders are antiquated.
The advisory committee for the clinical trial - of which I am just one very small part - addressed the question of whether the current measures used in eating disorders are antiquated. Because they drive home this idea that eating disorder behavior is a controlling behavior, which it’s not. That sounds like hysteria to me, and it’s something we really need to get away from. First, it’s incorrect. Second, it’s insulting. And third, it’s actually a barrier to treatment. Removing this verbiage from the eating disorder measures and replacing it with relevant verbiage that captures modern perspectives on the disorder is under consideration.
We’re all just really trying to understand anorexia better and differently, recognizing that if no progress has been made in any particular thing - despite the great minds that are working on it - maybe there’s something wrong with the core assumptions, or the axioms with which we’re working. So we’re looking to question those, and come at this illness with a more humble, open mind. How amazing would it be if a treatment like psilocybin, which is kind of just shaking up those neural pathways, could help break some of the cognitive rigidity and other things that often show up in anorexia and drive the very pathological behaviors?
Among many other remarkable researchers, COMPASS works with Dr. Walter Kaye out of UC San Diego, who’s doing brilliant work in this space. He’s really trying to understand the neurological structures in place, using brain imaging and genetics, and how these create different communication pathways in the anorectic brain. For example, the altered levels and behavior of dopamine receptors have been determined to be pre- and post-clinically remarkably different in the anorectic brain. This is helping us get to an understanding of what this disease actually is, and how its behaviors originate from a certain internal structure and communication process, as opposed to the antiquated view that the anorectic is just being “obstinate and controlling.” It’s very serious and important work.
COMPASS is also working with King’s College London, along with some other London-based entities, to explore the use of psilocybin as treatment. They have really pioneered this psychedelic space, studying psilocybin for treatment-resistant depression and PTSD. In many ways, they’ve laid the groundwork for other companies that are starting to explore treatments that were historically considered illicit drugs. They’ve done this work brilliantly, and their hearts are in the right place.
The Phase II trial in anorexia started earlier this year. It’s not a typical drug trial, as it’s a single dosing experience. And it’s not just a “trip.” There’s a fair amount of pre-work and preparation for the experience that’s done in a therapeutic way, where all variants are explored. The experience itself is supported during its entirety, with an extremely professional clinical staff and the clinicians themselves. And there’s a post-integration process as well. It’s a very deliberately designed process. I find it all to be so encouraging. More needs to be done in this space, and I deeply appreciate the COMPASS team for tackling this as-yet-unsolvable and deadly challenge. You can learn more about the trial here.
I truly cannot wait to see the data once it’s ready to be shared publicly.
I’ve never taken psilocybin myself. I’m interested in it, but of course I am nervous. I want to first have a better sense of how it impacts the anorectic mind. I truly cannot wait to see that data once it’s ready to be shared publicly. Because as I continue to learn and understand the process of psilocybin as a medication - and then I match that up with my understanding of my own psychological process - I can imagine it might be remarkably beneficial.
It’s interesting to think about, because, once you’ve found stable ground - which I am so grateful for - it feels really amazing. It’s frightening to imagine a life without it. But there’s really no such thing as 100% stability, right? Is that even a thing? So I’d be really interested in having an experience with this medication as a way to potentially help break down some of the daily challenges I still face. I can see how having something like psilocybin to stimulate my thought process - in a way that I could never on my own - would be incredibly beneficial. To just break out of those rutted, seemingly true thought patterns, and to have an experience that could be so different from the one I had believed to be true.
But, I don’t have a clear understanding yet of what the cost would be. At this stage of my healing, would it take something away from my structure or the foundation I’ve already set? I have created this functioning, viable life for myself. And it’s a life I love. But I can imagine for a younger person - someone in the throes of anorexia - well, I didn’t feel at that time like I had anything to lose. So I’d be most curious to understand their experience of it.
Moving from mental illness to mental health
I read a book earlier this year that was so beautiful and blew my mind in its humility and accountability toward patients. It’s called “Healing: Our Path From Mental Illness to Mental Health” by Dr. Thomas Insel, who served as the head of the National Institutes of Mental Health from 2000 to 2015. Dr. Insel’s daughter battled anorexia, and during that time, despite being the head of the NIMH, he felt like he had absolutely no idea where to turn that provided any measure of confidence. So that really says something, right? That it’s a system failure. Sure, there are treatment centers where patients can go, but they have zero data on their effectiveness or relapse rates. These programs tend to say a lot of words, but there seems to be no accountability to actually bringing someone from mental illness to mental health, and making sure they stay there.
He speaks about this explicitly in his book, and that in standard delivery healthcare across the board, and certainly in our clinical trials, we have these measures of accountability to the patient. We have incredible structures around that. But when it comes to psychiatry in practice, a lot of it evaporates. We’ve yet to even define what measures of accountability and expectations for success look like. And these are certainly conversations that should include the patient. He calls into question the places we’ve been looking for these answers, and that perhaps we should be looking through a more humanistic, quality of life perspective.
Dr. Insel opens the book with a really beautiful story. He was speaking at an event with other researchers about genetic research and biomarkers, and a gentleman in the back of the room yelled to the front of him, “You really don’t get it,” he said. “My 23-year-old son has schizophrenia. He has been hospitalized five times, made three suicide attempts, and now he is homeless. Our house is on fire and you are talking about the chemistry of the paint.”
Dr. Insel really listened to this person…realized he was right, and then went on to share this story widely…and I just adore him for that. Because yes, the chemistry of the paint is important and it is how we make progress, but we are neglecting the houses that are on fire. So we need to come at it in both ways: the research way and the humanist way.
Dr. Insel doesn’t claim this concept as his own. He works in a very community-centric way, and he cites a community-based mental health provider and community centers in California for really developing this idea of “people, place, purpose.”
People. We must recognize that people with mental illness are still humans - humans who are trying to have a life experience just like everyone else, with as much validity as anyone. They’re not less of anything. They are as human and as meaningful as everyone else, have all the same interests and desires as the rest of the world, and just want to live a life that they feel matters to them.
Connection is also huge. Health disorders across the board are so isolating. And I think with mental illness, it’s really exacerbated. Because with more “traditional” health disorders, like cancer, it’s so easy to show up for that, and most people want to. Let me be clear: not everyone who goes through a cancer journey experiences that. But broadly speaking, it feels relatively easier - emotionally and psychologically - to show up for someone with cancer, for example. But with mental health issues, like my grandfather and his schizophrenia, it’s very hard to show up for those things. Because you just don’t know what will happen. So mental illnesses are not only self-isolating, but also socially isolating, because we’ve yet to really create communities broadly that support serious mental illness. But we must find a way.
Place. Place is related to community and connection, but it’s also a recognition that a person can’t really show up for anything else in life until their basic needs are met. At the minimum, they need a comfortable and safe living space, and nutritious food.
Purpose. Purpose is something we all want, right? It’s so compelling and motivating, and it allows us to overcome so many other challenges. But with mental illness, you can lose your sense of purpose and direction, and you start to feel non-valuable to society. And then society reflects that back to you.
There needs to be a fair amount of humility and willingness to go deeper.
In terms of mental illness more broadly, I would love a future where it’s recognized as being fundamentally outside of the immediate control of the individual person, in terms of its onset and the behaviors it compels, and where it’s treated with respect and meaningfulness. We’ve started to talk more about it as a society, but we haven’t fully integrated it yet. We need to de-demonize mental illness and talk about it as the disorder that it is, the same way that we approach other illnesses outside the realm of mental health. Mental health issues have such a high mortality rate - often higher than other illnesses that we tend to take more seriously and put more resources toward. They deserve the same level of respect and seriousness. Using anorexia as an example, we’re not manipulative control freaks. That’s such a misogynistic perspective.
In the same way you don't want to see edema in a cardiac patient, you also don’t want to see psychological suffering in a depressed patient. We need to take the symptoms more seriously. And I would love to see more listening to the patient. In an area where we haven’t solved the problem, like with anorexia, there needs to be a fair amount of humility and willingness to go deeper to figure out what we don’t know, and recognize that the people going through it have something meaningful to share. And that’s why I was so excited to work with COMPASS, because their trial design is driven by actual patient benefit. And I think most people in this industry are driven by that, but doing it in a more explicit way, with much more frequent check-ins and holding ourselves accountable not to shareholders as much as to patients.
Ultimately, anorexia is a huge challenge for patients, for clinicians, and for researchers. But I just have this hope for the world to recognize that while it will take a tremendous amount of effort to make progress, it will be worth every bit of it. And that each person dealing with something like anorexia and other mental illness is charged with this colossal effort, in the direction of their own well being and their own creation of a life that they deem worth living. I like to remind myself and others that there's a better life to be had by devoting oneself to the journey toward mental health."
Keep scrolling to read Dawn's valuable advice for caregivers, below.
Dawn's Book
In Unrestricted: How I Stepped Off the Tightrope, Learned to Say No, and Silenced Anorexia, Dawn Brockett issues a call to action to change the way anorexia and anorectics are viewed and treated.
My career did not start in the clinical research space, but from a young age, I’ve always had a deep love and appreciation for medicine.
When I was eight, my best friend in the world was accidentally shot in the head with a BB gun that ricocheted. She was determined to be dead on arrival and taken to the hospital to harvest her organs. But when they arrived at the hospital, the neurosurgeon said she had a 0.5% chance to live. So they hooked her up to advanced life support (ALS). Months later, she woke up, and she's recovered as much as you can expect from a situation like that. I was so relieved. It was truly transformative for me. I knew then that I just had to pursue a career in healthcare.
My father was also an EMT and my stepmother was a critical care nurse. I’d go on calls with my dad sometimes, and when we were allowed, we’d kind of follow the patients through their journey, from the field to discharge. I was just really enamored by the effort of all the people involved, on behalf of total strangers. So all through high school and early into college I volunteered at my local hospital. I set a record for volunteer hours in high school…I was just obsessed, you know? And then because of my connections, I was lucky and got to work with the neurosurgeons there. I was so sure that that’s what I wanted to do for my entire career.
But when anorexia entered my life, it changed my course in many ways. I had a certain path in mind since I was eight years old, but my disease totally derailed that. At the time, it was devastating. But in retrospect, I’m really grateful for it. Because it opened up other doors for me.
Before I dive too far into this conversation, I’d like to make it clear that my expertise and my role as an advisor in the research and treatment of anorexia is based solely on my personal experience with a very restrictive anorexia nervosa. I never branched out into any other eating disorder, which is fairly rare, and I am not a medical professional. So I like to be very clear about my journey and my knowledge base. I’d also like to express my gratitude for those who work in this space.
Anorexia is a monster.
Out of the millions who suffer from anorexia, nearly a third of them die, a third have some sort of shadow of a life - where they are just tortured for the rest of their lives - and a third of them recover to the extent that might feel like a life is worth living. But it requires constant effort.
For me, a huge part of my struggle was not being taken seriously. I had some interesting forces in my life. My Dad is a diagnosed narcissistic sociopath, so that dynamic was extremely challenging. I’m going to make a very big claim here, but I think for young women, society can show up a little bit in that way as well. So I felt like I had it in my home, and I had it in society, and I was also part of a very bizarre and extremely strict religion. So I had these three pillars that were all saying the same thing to me. And I happened to be a highly competent, highly capable, highly accomplished young woman with all of these forces closing in on me. So more than anything else, I just wanted space. And that’s what I speak to in my book—that the answer is space. The answer is self-directed individuation. I never would have gotten well if I hadn’t created space. And I also never would have stayed well without it either.
There’s this quote from my book that rattles around in my brain a lot: stability without freedom is tyranny. I had this realization in my early twenties, where I knew I had such remarkable structure my entire life, but I started to want nothing to do with it. I wanted nothing to do with standard societal expectations. They weren't serving me and I didn’t care if it disappointed anyone. I even stopped working in the health space for a while. Instead I was a professional chef, I taught yoga, and I just did exactly as I wanted. I started to find my own rituals. It’s all simple stuff, but it provides powerful psychological safety for me and really fulfills me. Sometimes my rituals will take me hours down an unexpected direction and that’s fine. Because my rituals are not the same thing as rigidity. They are just things I know I can really count on to help me feel centered and alive.
Anorexia remains the deadliest mental health disorder.
Anorexia was first identified a millennia ago in different ways, and was actually considered a version of witchcraft. A lot of the Salem witches were anorectics. Historically, it was seen as some sort of superpower. Like, what do you mean you can starve yourself into this sort of ethereal being? You can imagine in the Middle Ages that it was seen as some sort of almost demonic possession, sorcery kind of thing. So it has this very tainted history, where the person herself (and 9 times out of 10 it is herself) is suffering significantly, and also bearing the burden of the irrational criticism and judgment placed on her. This suffering continued for a long time into the 20th century and still has a legacy today.
Anorexia was the first eating disorder identified in the first DSM (Diagnostic and Statistical Manual of Mental Disorders) of 1952, which is psychiatry’s way of saying that anorexia is a real thing, it has criteria and can be diagnosed, and thus we can research it and put money behind it. The DSM eventually expanded to contain other eating disorders, yet anorexia remains exactly as it was back then: the deadliest mental health disorder. It has essentially the same lifetime prevalence as schizophrenia, but a two to five times higher mortality rate and very little visibility or research being done.
This stuns people, because you’d think it’d be common knowledge…that something that exceptional in its mortality would surely be a bigger conversation, right? We hear a lot more about mental illness in today’s world. But I think we should throw gazillions more dollars and a lot more publicity behind all mental illnesses, right? The entire pie needs to grow.
These illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
In my book, I argue that what we really need to think more about is how young women are the ones who are primarily affected…and what that means about our society more broadly. When your brain throws your thoughts and behaviors into pathology and there is no obvious way to stop that train, it’s very, very devastating, and very, very challenging. There’s so much work to be done to demarginalize that experience, instill real hope in the people who are suffering, and help them absolutely understand that these illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
This is the lens through which I look at our current research paradigms. Because research has backpedaled a lot in anorexia. Everything that’s ever been thrown at anorexia pharmacologically - and I mean everything, without exception - has failed. I think it’s one of the only mental illnesses without any drug approved pharmacologically to treat it. Which is rare and strange.
The only therapy for anorexia that has benefited patients with discernible outcomes is family-based therapy. And there are probably really clear reasons why family-based therapy tends to work better than anything else. But it’s a tricky thing to assume that the only thing that might help you is a type of therapy that might be very difficult to access. Not all people with severe mental illness have a full family support system. So the likelihood of getting into that therapy in a meaningful way with your family is probably fairly slim.
It’s all too easy to blame social media.
When I was going through anorexia, there was no treatment at all. My small town hadn’t discovered family-based therapy, and frankly, given my family, that would have never happened anyway. There was no viable treatment, nothing I could turn to. Nothing to give me even the slightest bit of hope. To this day, we still lack an understanding of the social influence relevant to anorexia. If anything, we are actually starting to misunderstand it.
Social media is a good example of this. The conversation seems to be heading in a direction where social media is considered a cause of anorexia. But this is wrong. Social media can certainly open the door to eating disorders to those who perhaps have the propensity for it but haven’t yet been triggered, but it is not the cause. For society in general, social media intensifies the experience of our social expectations, and it intensifies the desire to approach these often irrational and unattainable expectations with sincerity. This turns into perfectionism, which is a hallmark of anorexia. But…I had no access to social media when I was ill. I had no cell phone, and I still nearly died.
It’s all too easy to blame social media, and if we do, we’ll never find the solution.
We need to get to the root of the problem.
When you look at people with anorexia who spend months in treatment, and you really try to see things from their perspective, you’ll see that they probably think things like, “Okay, I’m not going to die of cardiac arrest tomorrow. My electrolytes are in a good enough balance, so my heart’s not going to misfire.” And this is a critical first step for sure, because the physical impact is what you’ll die from. But my argument when it comes to anorexia - and really any mental illness that has a profound physical effect - is that while medicine does a pretty good job at solving a physical problem, this still isn’t getting to the root of the problem. Because in fact, once you’ve solved the physical parts of the illness, what you’ve actually done is complicate the problem. And this is okay…we must complicate the problem. But we have to think about the girl in her own mind now. You’ve added a significant amount of weight to her body, so the voice that destroys her, moment by moment, just got louder…because you’ve done the thing it doesn’t want you to do. She’s in a worse psychological position than she was before. These are the psychological underpinnings that can’t be solved by only addressing the physicality of the disease. Neglecting this is likely why the relapse rate of anorexia is very high.
Ultimately, the psychology behind anorexia is not understood well enough yet. And no one - not even clinicians - will talk about things they don’t know or understand well. So what ends up happening is that we just never address it. And that’s where I issue a call-to-action to the industry: Let’s listen to those who have been through it. Do I have all the answers? Of course not. Not even close. But I’m here and I’m highly functioning, and if you knew my story, you’d be blown away by that. So it's got to be an experience worth paying attention to, right?
When I met the COMPASS founders and learned that they were coming for anorexia - which felt like the third rail - it was very moving.
In my late twenties, I reconnected with my love for medicine. I worked for Forest Pharmaceuticals (now Allergan) and later Sanofi, with visibility to both the non-clinical side and R&D side. Eventually I found that I started to love R&D more, because it felt like everything we were doing on the commercial side was born from the research side. I also worked in health tech for a brief period of time, to become more savvy in that sector and how it intersects with clinical trials.
From there I discovered CNS Summit, founded by Dr. Amir Kalali, who had previously served as the Global Head of the Neuroscience Center of Excellence at Quintiles for 20 years. I met Dr. Kalali at the release of the DSM-V in 2013, and we struck up a great friendship and professional collaboration around the Summit. I became a sort of volunteer 'Chief of Staff' onsite for Summit for many years and now am the Managing Director, Head of Community Partnerships. It was here where I really started to immerse myself more in the clinical research space. I’ve gotten to know this world so much better, and have really tried to marinate in as much knowledge as I can.
It was through CNS Summit in 2018 that I met the two founders of COMPASS Pathways, the entity I now work with as an advisor to their clinical trials in anorexia. The current approaches to anorexia have never produced a positive outcome epidemiologically, with the exception of family-based therapy, which is of course not something that can be patented. So when I met the COMPASS founders and learned that they were coming for anorexia using the patient’s subjective experience - which felt like the third rail - it was very moving.
At Summit, one of the founders of COMPASS, Ekaterina Malievskaia, MD, was talking about her company’s approach to mental illness treatment, where they integrate the patient’s subjective experience as an endpoint with the FDA. And it just struck me, because that’s so atypical and so, so remarkable. She mentioned that they were seeing positive results in using psilocybin for treatment-resistant depression and that they were eyeing anorexia nervosa next. I teared up in that moment. I thought to myself, they’re coming for anorexia from the perspective of the actual patient’s subjective experience on whether they feel meaningfully different or not from the treatment—versus me sitting in a chair with someone in a white coat and a pad of paper or computer saying “I deem you better!” That way just never quite resonated with me. So this idea that we’re going to really listen to patients and see if they think they’re having a better experience with their disorder…is just amazing.
I later had the chance to connect with Ekaterina to share my story. She ended up writing the prologue of my book, and invited me to have a voice at the table as they put together these trials, which was such a remarkable, unexpected and incredible honor.
The current measures used in eating disorders are antiquated.
The advisory committee for the clinical trial - of which I am just one very small part - addressed the question of whether the current measures used in eating disorders are antiquated. Because they drive home this idea that eating disorder behavior is a controlling behavior, which it’s not. That sounds like hysteria to me, and it’s something we really need to get away from. First, it’s incorrect. Second, it’s insulting. And third, it’s actually a barrier to treatment. Removing this verbiage from the eating disorder measures and replacing it with relevant verbiage that captures modern perspectives on the disorder is under consideration.
We’re all just really trying to understand anorexia better and differently, recognizing that if no progress has been made in any particular thing - despite the great minds that are working on it - maybe there’s something wrong with the core assumptions, or the axioms with which we’re working. So we’re looking to question those, and come at this illness with a more humble, open mind. How amazing would it be if a treatment like psilocybin, which is kind of just shaking up those neural pathways, could help break some of the cognitive rigidity and other things that often show up in anorexia and drive the very pathological behaviors?
Among many other remarkable researchers, COMPASS works with Dr. Walter Kaye out of UC San Diego, who’s doing brilliant work in this space. He’s really trying to understand the neurological structures in place, using brain imaging and genetics, and how these create different communication pathways in the anorectic brain. For example, the altered levels and behavior of dopamine receptors have been determined to be pre- and post-clinically remarkably different in the anorectic brain. This is helping us get to an understanding of what this disease actually is, and how its behaviors originate from a certain internal structure and communication process, as opposed to the antiquated view that the anorectic is just being “obstinate and controlling.” It’s very serious and important work.
COMPASS is also working with King’s College London, along with some other London-based entities, to explore the use of psilocybin as treatment. They have really pioneered this psychedelic space, studying psilocybin for treatment-resistant depression and PTSD. In many ways, they’ve laid the groundwork for other companies that are starting to explore treatments that were historically considered illicit drugs. They’ve done this work brilliantly, and their hearts are in the right place.
The Phase II trial in anorexia started earlier this year. It’s not a typical drug trial, as it’s a single dosing experience. And it’s not just a “trip.” There’s a fair amount of pre-work and preparation for the experience that’s done in a therapeutic way, where all variants are explored. The experience itself is supported during its entirety, with an extremely professional clinical staff and the clinicians themselves. And there’s a post-integration process as well. It’s a very deliberately designed process. I find it all to be so encouraging. More needs to be done in this space, and I deeply appreciate the COMPASS team for tackling this as-yet-unsolvable and deadly challenge. You can learn more about the trial here.
I truly cannot wait to see the data once it’s ready to be shared publicly.
I’ve never taken psilocybin myself. I’m interested in it, but of course I am nervous. I want to first have a better sense of how it impacts the anorectic mind. I truly cannot wait to see that data once it’s ready to be shared publicly. Because as I continue to learn and understand the process of psilocybin as a medication - and then I match that up with my understanding of my own psychological process - I can imagine it might be remarkably beneficial.
It’s interesting to think about, because, once you’ve found stable ground - which I am so grateful for - it feels really amazing. It’s frightening to imagine a life without it. But there’s really no such thing as 100% stability, right? Is that even a thing? So I’d be really interested in having an experience with this medication as a way to potentially help break down some of the daily challenges I still face. I can see how having something like psilocybin to stimulate my thought process - in a way that I could never on my own - would be incredibly beneficial. To just break out of those rutted, seemingly true thought patterns, and to have an experience that could be so different from the one I had believed to be true.
But, I don’t have a clear understanding yet of what the cost would be. At this stage of my healing, would it take something away from my structure or the foundation I’ve already set? I have created this functioning, viable life for myself. And it’s a life I love. But I can imagine for a younger person - someone in the throes of anorexia - well, I didn’t feel at that time like I had anything to lose. So I’d be most curious to understand their experience of it.
Moving from mental illness to mental health
I read a book earlier this year that was so beautiful and blew my mind in its humility and accountability toward patients. It’s called “Healing: Our Path From Mental Illness to Mental Health” by Dr. Thomas Insel, who served as the head of the National Institutes of Mental Health from 2000 to 2015. Dr. Insel’s daughter battled anorexia, and during that time, despite being the head of the NIMH, he felt like he had absolutely no idea where to turn that provided any measure of confidence. So that really says something, right? That it’s a system failure. Sure, there are treatment centers where patients can go, but they have zero data on their effectiveness or relapse rates. These programs tend to say a lot of words, but there seems to be no accountability to actually bringing someone from mental illness to mental health, and making sure they stay there.
He speaks about this explicitly in his book, and that in standard delivery healthcare across the board, and certainly in our clinical trials, we have these measures of accountability to the patient. We have incredible structures around that. But when it comes to psychiatry in practice, a lot of it evaporates. We’ve yet to even define what measures of accountability and expectations for success look like. And these are certainly conversations that should include the patient. He calls into question the places we’ve been looking for these answers, and that perhaps we should be looking through a more humanistic, quality of life perspective.
Dr. Insel opens the book with a really beautiful story. He was speaking at an event with other researchers about genetic research and biomarkers, and a gentleman in the back of the room yelled to the front of him, “You really don’t get it,” he said. “My 23-year-old son has schizophrenia. He has been hospitalized five times, made three suicide attempts, and now he is homeless. Our house is on fire and you are talking about the chemistry of the paint.”
Dr. Insel really listened to this person…realized he was right, and then went on to share this story widely…and I just adore him for that. Because yes, the chemistry of the paint is important and it is how we make progress, but we are neglecting the houses that are on fire. So we need to come at it in both ways: the research way and the humanist way.
Dr. Insel doesn’t claim this concept as his own. He works in a very community-centric way, and he cites a community-based mental health provider and community centers in California for really developing this idea of “people, place, purpose.”
People. We must recognize that people with mental illness are still humans - humans who are trying to have a life experience just like everyone else, with as much validity as anyone. They’re not less of anything. They are as human and as meaningful as everyone else, have all the same interests and desires as the rest of the world, and just want to live a life that they feel matters to them.
Connection is also huge. Health disorders across the board are so isolating. And I think with mental illness, it’s really exacerbated. Because with more “traditional” health disorders, like cancer, it’s so easy to show up for that, and most people want to. Let me be clear: not everyone who goes through a cancer journey experiences that. But broadly speaking, it feels relatively easier - emotionally and psychologically - to show up for someone with cancer, for example. But with mental health issues, like my grandfather and his schizophrenia, it’s very hard to show up for those things. Because you just don’t know what will happen. So mental illnesses are not only self-isolating, but also socially isolating, because we’ve yet to really create communities broadly that support serious mental illness. But we must find a way.
Place. Place is related to community and connection, but it’s also a recognition that a person can’t really show up for anything else in life until their basic needs are met. At the minimum, they need a comfortable and safe living space, and nutritious food.
Purpose. Purpose is something we all want, right? It’s so compelling and motivating, and it allows us to overcome so many other challenges. But with mental illness, you can lose your sense of purpose and direction, and you start to feel non-valuable to society. And then society reflects that back to you.
There needs to be a fair amount of humility and willingness to go deeper.
In terms of mental illness more broadly, I would love a future where it’s recognized as being fundamentally outside of the immediate control of the individual person, in terms of its onset and the behaviors it compels, and where it’s treated with respect and meaningfulness. We’ve started to talk more about it as a society, but we haven’t fully integrated it yet. We need to de-demonize mental illness and talk about it as the disorder that it is, the same way that we approach other illnesses outside the realm of mental health. Mental health issues have such a high mortality rate - often higher than other illnesses that we tend to take more seriously and put more resources toward. They deserve the same level of respect and seriousness. Using anorexia as an example, we’re not manipulative control freaks. That’s such a misogynistic perspective.
In the same way you don't want to see edema in a cardiac patient, you also don’t want to see psychological suffering in a depressed patient. We need to take the symptoms more seriously. And I would love to see more listening to the patient. In an area where we haven’t solved the problem, like with anorexia, there needs to be a fair amount of humility and willingness to go deeper to figure out what we don’t know, and recognize that the people going through it have something meaningful to share. And that’s why I was so excited to work with COMPASS, because their trial design is driven by actual patient benefit. And I think most people in this industry are driven by that, but doing it in a more explicit way, with much more frequent check-ins and holding ourselves accountable not to shareholders as much as to patients.
Ultimately, anorexia is a huge challenge for patients, for clinicians, and for researchers. But I just have this hope for the world to recognize that while it will take a tremendous amount of effort to make progress, it will be worth every bit of it. And that each person dealing with something like anorexia and other mental illness is charged with this colossal effort, in the direction of their own well being and their own creation of a life that they deem worth living. I like to remind myself and others that there's a better life to be had by devoting oneself to the journey toward mental health."
Keep scrolling to read Dawn's valuable advice for caregivers, below.
Dawn's Book
In Unrestricted: How I Stepped Off the Tightrope, Learned to Say No, and Silenced Anorexia, Dawn Brockett issues a call to action to change the way anorexia and anorectics are viewed and treated.
My career did not start in the clinical research space, but from a young age, I’ve always had a deep love and appreciation for medicine.
When I was eight, my best friend in the world was accidentally shot in the head with a BB gun that ricocheted. She was determined to be dead on arrival and taken to the hospital to harvest her organs. But when they arrived at the hospital, the neurosurgeon said she had a 0.5% chance to live. So they hooked her up to advanced life support (ALS). Months later, she woke up, and she's recovered as much as you can expect from a situation like that. I was so relieved. It was truly transformative for me. I knew then that I just had to pursue a career in healthcare.
My father was also an EMT and my stepmother was a critical care nurse. I’d go on calls with my dad sometimes, and when we were allowed, we’d kind of follow the patients through their journey, from the field to discharge. I was just really enamored by the effort of all the people involved, on behalf of total strangers. So all through high school and early into college I volunteered at my local hospital. I set a record for volunteer hours in high school…I was just obsessed, you know? And then because of my connections, I was lucky and got to work with the neurosurgeons there. I was so sure that that’s what I wanted to do for my entire career.
But when anorexia entered my life, it changed my course in many ways. I had a certain path in mind since I was eight years old, but my disease totally derailed that. At the time, it was devastating. But in retrospect, I’m really grateful for it. Because it opened up other doors for me.
Before I dive too far into this conversation, I’d like to make it clear that my expertise and my role as an advisor in the research and treatment of anorexia is based solely on my personal experience with a very restrictive anorexia nervosa. I never branched out into any other eating disorder, which is fairly rare, and I am not a medical professional. So I like to be very clear about my journey and my knowledge base. I’d also like to express my gratitude for those who work in this space.
Anorexia is a monster.
Out of the millions who suffer from anorexia, nearly a third of them die, a third have some sort of shadow of a life - where they are just tortured for the rest of their lives - and a third of them recover to the extent that might feel like a life is worth living. But it requires constant effort.
For me, a huge part of my struggle was not being taken seriously. I had some interesting forces in my life. My Dad is a diagnosed narcissistic sociopath, so that dynamic was extremely challenging. I’m going to make a very big claim here, but I think for young women, society can show up a little bit in that way as well. So I felt like I had it in my home, and I had it in society, and I was also part of a very bizarre and extremely strict religion. So I had these three pillars that were all saying the same thing to me. And I happened to be a highly competent, highly capable, highly accomplished young woman with all of these forces closing in on me. So more than anything else, I just wanted space. And that’s what I speak to in my book—that the answer is space. The answer is self-directed individuation. I never would have gotten well if I hadn’t created space. And I also never would have stayed well without it either.
There’s this quote from my book that rattles around in my brain a lot: stability without freedom is tyranny. I had this realization in my early twenties, where I knew I had such remarkable structure my entire life, but I started to want nothing to do with it. I wanted nothing to do with standard societal expectations. They weren't serving me and I didn’t care if it disappointed anyone. I even stopped working in the health space for a while. Instead I was a professional chef, I taught yoga, and I just did exactly as I wanted. I started to find my own rituals. It’s all simple stuff, but it provides powerful psychological safety for me and really fulfills me. Sometimes my rituals will take me hours down an unexpected direction and that’s fine. Because my rituals are not the same thing as rigidity. They are just things I know I can really count on to help me feel centered and alive.
Anorexia remains the deadliest mental health disorder.
Anorexia was first identified a millennia ago in different ways, and was actually considered a version of witchcraft. A lot of the Salem witches were anorectics. Historically, it was seen as some sort of superpower. Like, what do you mean you can starve yourself into this sort of ethereal being? You can imagine in the Middle Ages that it was seen as some sort of almost demonic possession, sorcery kind of thing. So it has this very tainted history, where the person herself (and 9 times out of 10 it is herself) is suffering significantly, and also bearing the burden of the irrational criticism and judgment placed on her. This suffering continued for a long time into the 20th century and still has a legacy today.
Anorexia was the first eating disorder identified in the first DSM (Diagnostic and Statistical Manual of Mental Disorders) of 1952, which is psychiatry’s way of saying that anorexia is a real thing, it has criteria and can be diagnosed, and thus we can research it and put money behind it. The DSM eventually expanded to contain other eating disorders, yet anorexia remains exactly as it was back then: the deadliest mental health disorder. It has essentially the same lifetime prevalence as schizophrenia, but a two to five times higher mortality rate and very little visibility or research being done.
This stuns people, because you’d think it’d be common knowledge…that something that exceptional in its mortality would surely be a bigger conversation, right? We hear a lot more about mental illness in today’s world. But I think we should throw gazillions more dollars and a lot more publicity behind all mental illnesses, right? The entire pie needs to grow.
These illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
In my book, I argue that what we really need to think more about is how young women are the ones who are primarily affected…and what that means about our society more broadly. When your brain throws your thoughts and behaviors into pathology and there is no obvious way to stop that train, it’s very, very devastating, and very, very challenging. There’s so much work to be done to demarginalize that experience, instill real hope in the people who are suffering, and help them absolutely understand that these illnesses don’t exist just in our heads; they exist in the water we swim in as a society.
This is the lens through which I look at our current research paradigms. Because research has backpedaled a lot in anorexia. Everything that’s ever been thrown at anorexia pharmacologically - and I mean everything, without exception - has failed. I think it’s one of the only mental illnesses without any drug approved pharmacologically to treat it. Which is rare and strange.
The only therapy for anorexia that has benefited patients with discernible outcomes is family-based therapy. And there are probably really clear reasons why family-based therapy tends to work better than anything else. But it’s a tricky thing to assume that the only thing that might help you is a type of therapy that might be very difficult to access. Not all people with severe mental illness have a full family support system. So the likelihood of getting into that therapy in a meaningful way with your family is probably fairly slim.
It’s all too easy to blame social media.
When I was going through anorexia, there was no treatment at all. My small town hadn’t discovered family-based therapy, and frankly, given my family, that would have never happened anyway. There was no viable treatment, nothing I could turn to. Nothing to give me even the slightest bit of hope. To this day, we still lack an understanding of the social influence relevant to anorexia. If anything, we are actually starting to misunderstand it.
Social media is a good example of this. The conversation seems to be heading in a direction where social media is considered a cause of anorexia. But this is wrong. Social media can certainly open the door to eating disorders to those who perhaps have the propensity for it but haven’t yet been triggered, but it is not the cause. For society in general, social media intensifies the experience of our social expectations, and it intensifies the desire to approach these often irrational and unattainable expectations with sincerity. This turns into perfectionism, which is a hallmark of anorexia. But…I had no access to social media when I was ill. I had no cell phone, and I still nearly died.
It’s all too easy to blame social media, and if we do, we’ll never find the solution.
We need to get to the root of the problem.
When you look at people with anorexia who spend months in treatment, and you really try to see things from their perspective, you’ll see that they probably think things like, “Okay, I’m not going to die of cardiac arrest tomorrow. My electrolytes are in a good enough balance, so my heart’s not going to misfire.” And this is a critical first step for sure, because the physical impact is what you’ll die from. But my argument when it comes to anorexia - and really any mental illness that has a profound physical effect - is that while medicine does a pretty good job at solving a physical problem, this still isn’t getting to the root of the problem. Because in fact, once you’ve solved the physical parts of the illness, what you’ve actually done is complicate the problem. And this is okay…we must complicate the problem. But we have to think about the girl in her own mind now. You’ve added a significant amount of weight to her body, so the voice that destroys her, moment by moment, just got louder…because you’ve done the thing it doesn’t want you to do. She’s in a worse psychological position than she was before. These are the psychological underpinnings that can’t be solved by only addressing the physicality of the disease. Neglecting this is likely why the relapse rate of anorexia is very high.
Ultimately, the psychology behind anorexia is not understood well enough yet. And no one - not even clinicians - will talk about things they don’t know or understand well. So what ends up happening is that we just never address it. And that’s where I issue a call-to-action to the industry: Let’s listen to those who have been through it. Do I have all the answers? Of course not. Not even close. But I’m here and I’m highly functioning, and if you knew my story, you’d be blown away by that. So it's got to be an experience worth paying attention to, right?
When I met the COMPASS founders and learned that they were coming for anorexia - which felt like the third rail - it was very moving.
In my late twenties, I reconnected with my love for medicine. I worked for Forest Pharmaceuticals (now Allergan) and later Sanofi, with visibility to both the non-clinical side and R&D side. Eventually I found that I started to love R&D more, because it felt like everything we were doing on the commercial side was born from the research side. I also worked in health tech for a brief period of time, to become more savvy in that sector and how it intersects with clinical trials.
From there I discovered CNS Summit, founded by Dr. Amir Kalali, who had previously served as the Global Head of the Neuroscience Center of Excellence at Quintiles for 20 years. I met Dr. Kalali at the release of the DSM-V in 2013, and we struck up a great friendship and professional collaboration around the Summit. I became a sort of volunteer 'Chief of Staff' onsite for Summit for many years and now am the Managing Director, Head of Community Partnerships. It was here where I really started to immerse myself more in the clinical research space. I’ve gotten to know this world so much better, and have really tried to marinate in as much knowledge as I can.
It was through CNS Summit in 2018 that I met the two founders of COMPASS Pathways, the entity I now work with as an advisor to their clinical trials in anorexia. The current approaches to anorexia have never produced a positive outcome epidemiologically, with the exception of family-based therapy, which is of course not something that can be patented. So when I met the COMPASS founders and learned that they were coming for anorexia using the patient’s subjective experience - which felt like the third rail - it was very moving.
At Summit, one of the founders of COMPASS, Ekaterina Malievskaia, MD, was talking about her company’s approach to mental illness treatment, where they integrate the patient’s subjective experience as an endpoint with the FDA. And it just struck me, because that’s so atypical and so, so remarkable. She mentioned that they were seeing positive results in using psilocybin for treatment-resistant depression and that they were eyeing anorexia nervosa next. I teared up in that moment. I thought to myself, they’re coming for anorexia from the perspective of the actual patient’s subjective experience on whether they feel meaningfully different or not from the treatment—versus me sitting in a chair with someone in a white coat and a pad of paper or computer saying “I deem you better!” That way just never quite resonated with me. So this idea that we’re going to really listen to patients and see if they think they’re having a better experience with their disorder…is just amazing.
I later had the chance to connect with Ekaterina to share my story. She ended up writing the prologue of my book, and invited me to have a voice at the table as they put together these trials, which was such a remarkable, unexpected and incredible honor.
The current measures used in eating disorders are antiquated.
The advisory committee for the clinical trial - of which I am just one very small part - addressed the question of whether the current measures used in eating disorders are antiquated. Because they drive home this idea that eating disorder behavior is a controlling behavior, which it’s not. That sounds like hysteria to me, and it’s something we really need to get away from. First, it’s incorrect. Second, it’s insulting. And third, it’s actually a barrier to treatment. Removing this verbiage from the eating disorder measures and replacing it with relevant verbiage that captures modern perspectives on the disorder is under consideration.
We’re all just really trying to understand anorexia better and differently, recognizing that if no progress has been made in any particular thing - despite the great minds that are working on it - maybe there’s something wrong with the core assumptions, or the axioms with which we’re working. So we’re looking to question those, and come at this illness with a more humble, open mind. How amazing would it be if a treatment like psilocybin, which is kind of just shaking up those neural pathways, could help break some of the cognitive rigidity and other things that often show up in anorexia and drive the very pathological behaviors?
Among many other remarkable researchers, COMPASS works with Dr. Walter Kaye out of UC San Diego, who’s doing brilliant work in this space. He’s really trying to understand the neurological structures in place, using brain imaging and genetics, and how these create different communication pathways in the anorectic brain. For example, the altered levels and behavior of dopamine receptors have been determined to be pre- and post-clinically remarkably different in the anorectic brain. This is helping us get to an understanding of what this disease actually is, and how its behaviors originate from a certain internal structure and communication process, as opposed to the antiquated view that the anorectic is just being “obstinate and controlling.” It’s very serious and important work.
COMPASS is also working with King’s College London, along with some other London-based entities, to explore the use of psilocybin as treatment. They have really pioneered this psychedelic space, studying psilocybin for treatment-resistant depression and PTSD. In many ways, they’ve laid the groundwork for other companies that are starting to explore treatments that were historically considered illicit drugs. They’ve done this work brilliantly, and their hearts are in the right place.
The Phase II trial in anorexia started earlier this year. It’s not a typical drug trial, as it’s a single dosing experience. And it’s not just a “trip.” There’s a fair amount of pre-work and preparation for the experience that’s done in a therapeutic way, where all variants are explored. The experience itself is supported during its entirety, with an extremely professional clinical staff and the clinicians themselves. And there’s a post-integration process as well. It’s a very deliberately designed process. I find it all to be so encouraging. More needs to be done in this space, and I deeply appreciate the COMPASS team for tackling this as-yet-unsolvable and deadly challenge. You can learn more about the trial here.
I truly cannot wait to see the data once it’s ready to be shared publicly.
I’ve never taken psilocybin myself. I’m interested in it, but of course I am nervous. I want to first have a better sense of how it impacts the anorectic mind. I truly cannot wait to see that data once it’s ready to be shared publicly. Because as I continue to learn and understand the process of psilocybin as a medication - and then I match that up with my understanding of my own psychological process - I can imagine it might be remarkably beneficial.
It’s interesting to think about, because, once you’ve found stable ground - which I am so grateful for - it feels really amazing. It’s frightening to imagine a life without it. But there’s really no such thing as 100% stability, right? Is that even a thing? So I’d be really interested in having an experience with this medication as a way to potentially help break down some of the daily challenges I still face. I can see how having something like psilocybin to stimulate my thought process - in a way that I could never on my own - would be incredibly beneficial. To just break out of those rutted, seemingly true thought patterns, and to have an experience that could be so different from the one I had believed to be true.
But, I don’t have a clear understanding yet of what the cost would be. At this stage of my healing, would it take something away from my structure or the foundation I’ve already set? I have created this functioning, viable life for myself. And it’s a life I love. But I can imagine for a younger person - someone in the throes of anorexia - well, I didn’t feel at that time like I had anything to lose. So I’d be most curious to understand their experience of it.
Moving from mental illness to mental health
I read a book earlier this year that was so beautiful and blew my mind in its humility and accountability toward patients. It’s called “Healing: Our Path From Mental Illness to Mental Health” by Dr. Thomas Insel, who served as the head of the National Institutes of Mental Health from 2000 to 2015. Dr. Insel’s daughter battled anorexia, and during that time, despite being the head of the NIMH, he felt like he had absolutely no idea where to turn that provided any measure of confidence. So that really says something, right? That it’s a system failure. Sure, there are treatment centers where patients can go, but they have zero data on their effectiveness or relapse rates. These programs tend to say a lot of words, but there seems to be no accountability to actually bringing someone from mental illness to mental health, and making sure they stay there.
He speaks about this explicitly in his book, and that in standard delivery healthcare across the board, and certainly in our clinical trials, we have these measures of accountability to the patient. We have incredible structures around that. But when it comes to psychiatry in practice, a lot of it evaporates. We’ve yet to even define what measures of accountability and expectations for success look like. And these are certainly conversations that should include the patient. He calls into question the places we’ve been looking for these answers, and that perhaps we should be looking through a more humanistic, quality of life perspective.
Dr. Insel opens the book with a really beautiful story. He was speaking at an event with other researchers about genetic research and biomarkers, and a gentleman in the back of the room yelled to the front of him, “You really don’t get it,” he said. “My 23-year-old son has schizophrenia. He has been hospitalized five times, made three suicide attempts, and now he is homeless. Our house is on fire and you are talking about the chemistry of the paint.”
Dr. Insel really listened to this person…realized he was right, and then went on to share this story widely…and I just adore him for that. Because yes, the chemistry of the paint is important and it is how we make progress, but we are neglecting the houses that are on fire. So we need to come at it in both ways: the research way and the humanist way.
Dr. Insel doesn’t claim this concept as his own. He works in a very community-centric way, and he cites a community-based mental health provider and community centers in California for really developing this idea of “people, place, purpose.”
People. We must recognize that people with mental illness are still humans - humans who are trying to have a life experience just like everyone else, with as much validity as anyone. They’re not less of anything. They are as human and as meaningful as everyone else, have all the same interests and desires as the rest of the world, and just want to live a life that they feel matters to them.
Connection is also huge. Health disorders across the board are so isolating. And I think with mental illness, it’s really exacerbated. Because with more “traditional” health disorders, like cancer, it’s so easy to show up for that, and most people want to. Let me be clear: not everyone who goes through a cancer journey experiences that. But broadly speaking, it feels relatively easier - emotionally and psychologically - to show up for someone with cancer, for example. But with mental health issues, like my grandfather and his schizophrenia, it’s very hard to show up for those things. Because you just don’t know what will happen. So mental illnesses are not only self-isolating, but also socially isolating, because we’ve yet to really create communities broadly that support serious mental illness. But we must find a way.
Place. Place is related to community and connection, but it’s also a recognition that a person can’t really show up for anything else in life until their basic needs are met. At the minimum, they need a comfortable and safe living space, and nutritious food.
Purpose. Purpose is something we all want, right? It’s so compelling and motivating, and it allows us to overcome so many other challenges. But with mental illness, you can lose your sense of purpose and direction, and you start to feel non-valuable to society. And then society reflects that back to you.
There needs to be a fair amount of humility and willingness to go deeper.
In terms of mental illness more broadly, I would love a future where it’s recognized as being fundamentally outside of the immediate control of the individual person, in terms of its onset and the behaviors it compels, and where it’s treated with respect and meaningfulness. We’ve started to talk more about it as a society, but we haven’t fully integrated it yet. We need to de-demonize mental illness and talk about it as the disorder that it is, the same way that we approach other illnesses outside the realm of mental health. Mental health issues have such a high mortality rate - often higher than other illnesses that we tend to take more seriously and put more resources toward. They deserve the same level of respect and seriousness. Using anorexia as an example, we’re not manipulative control freaks. That’s such a misogynistic perspective.
In the same way you don't want to see edema in a cardiac patient, you also don’t want to see psychological suffering in a depressed patient. We need to take the symptoms more seriously. And I would love to see more listening to the patient. In an area where we haven’t solved the problem, like with anorexia, there needs to be a fair amount of humility and willingness to go deeper to figure out what we don’t know, and recognize that the people going through it have something meaningful to share. And that’s why I was so excited to work with COMPASS, because their trial design is driven by actual patient benefit. And I think most people in this industry are driven by that, but doing it in a more explicit way, with much more frequent check-ins and holding ourselves accountable not to shareholders as much as to patients.
Ultimately, anorexia is a huge challenge for patients, for clinicians, and for researchers. But I just have this hope for the world to recognize that while it will take a tremendous amount of effort to make progress, it will be worth every bit of it. And that each person dealing with something like anorexia and other mental illness is charged with this colossal effort, in the direction of their own well being and their own creation of a life that they deem worth living. I like to remind myself and others that there's a better life to be had by devoting oneself to the journey toward mental health."
Keep scrolling to read Dawn's valuable advice for caregivers, below.
Dawn's Book
In Unrestricted: How I Stepped Off the Tightrope, Learned to Say No, and Silenced Anorexia, Dawn Brockett issues a call to action to change the way anorexia and anorectics are viewed and treated.
It is critical to distinguish the girl from the voice of anorexia. Remember, the girl that you love and the anorectic brain are two different entities. She is not that monster in her head; she is captured and tormented by that monster. Be rigorous with the distinction. It will allow her to see that she is not 'that', which is the first major step of recovery. Here is what you can do to help distinguish the two.
1. Develop Empathy: Rumi said, "When all is understood, all is forgiven." Through her, you may also be tormented by that monster on occasion. Do not blame her. This temporary torment that you experience—she experiences at high volume all of the time. Let your momentary experiences create empathy, not blame.
2. Side With Her to Fight Him: When the anorectic brain (some call him ED) compels her to behave in counterproductive ways, side with her in favor of the healthy and productive alternative. For example, when she consistently restricts herself from any joys in life, you might say (in utter kindness):"I know that ED does not want to allow you to go do this fun thing with friends, but you and I know doing the fun and delightful thing strengthens you and weakens him. Let's choose you today, and let's go out to do that fun thing!" Then help to make it possible.
3. Support Her Choices: Do Not Override Her Interests and Desires—In the throes of anorexia, you have no sense of your own identity. The anorectic exists to serve others—and the voice of anorexia. It is more difficult to make a decision than you can imagine. Small decisions add up over time to larger ones and eventually to a self-constructed identity. Never override her constructive (pro-self, not pro-anorexia) decisions. Never. No matter how much you wish for something else. Overriding her is siding with anorexia. Don't do it. Give her space; let her grow.
4. Reign in Your Own Needs—It is critically important to be self-aware around a person with anorexia. Guilt, shame, sacrificing oneself for others—these are anorexic reflexes. Be aware of your own expression of your needs, even your complaints. She will take them on as something to fix for you—trying to care for you before even learning how to care for herself. Don't let her. Contain yourself, so as not to reinforce her reasons for restriction.
The anorectic brain is relentless, but it can be distracted and redirected in moments, and these moments carry so much meaning beyond just the instant of freedom. They are proof to the person suffering that joyful thoughts and experiences outside of the hell of her mind are real. She can use these moments to develop the strength she will need in order to one day silence the monster in her mind.
These ideas can help you help her silence the anorectic brain:
1. Laughter—it silences anorexia instantly. The death drive of anorexia and laughter cannot coexist. Laughter wins.
2. Playing with animals—dogs, horses, kittens, and all manner of sweet creatures—these are angels who love for love's sake with no judgment. They are proof that the false reality created by our self-criticism is not believed outside of our minds.
3. Conversation—a deep conversation about anything but the illness that is interesting to the person suffering is powerful. The last thing I ever wanted to talk about was my illness. It was already my 24/7 consort; why waste precious time with another human talking about it? What I craved was intellectually stimulating conversation about anything else. My brain, though hijacked, still functioned brilliantly. I loved moments when I could set it to work in another direction.
4. Creativity—art, music, writing, painting, building, gardening—creation counters the persistent destructive voice in the mind of the anorectic.
5. Beauty—flowers, art, nature walks—objective beauty that is not body-based is so very powerful. The ideal of beauty in the anorectic mind is warped, absurd, deadly. The brilliant Victor Hugo said, "The beautiful is as useful as the useful; Perhaps more so." Never underestimate the power of beauty.
6. Learning— Consuming the mind with constructive thought offers a modicum of relief to the never-ending rumination of self-hating thoughts that the anorectic endures every day. Busy her mind with something that requires a tremendous amount of concentration to give her sweet brain a break.
Another lecture about what she should and shouldn't do will not help. I promise. Instead, hold the space of other possibilities; create a spark to light her path to a life worth living.
Representation Matters
Increasing diversity in clinical trials builds trust, promotes health equity, and leads to more effective treatments and better outcomes (NEJM). But there is much work to be done - and barriers to break - to improve awareness and access for all people.
Do you know someone who is a member of a marginalized community who has participated in a clinical trial? If so, we’d love to meet them and share their story. We hope to represent the many faces of clinical trials through this project, and inspire others by shining a light on their experience.
They can contact us here.
