Understanding Lived Experience With Eating Disorders Featuring Johanna Kandel and Alexandra Miles

As part of Eating Disorder Awareness Week, NAMI CEO Daniel H. Gillison, Jr. is joined by Johanna Kandel (National Alliance for Eating Disorders) and Alexandra Miles (Project Blackbird). Together, they discuss stigma facing those living with eating disorders, barriers to recovery, and what each guest wishes people knew about eating disorders. 

Connect with National Alliance for Eating Disorders at https://www.allianceforeatingdisorders.com/

Find Project Blackbird online at https://www.projectblackbirdinc.org/

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

Transcript

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Out of everyone who experiences an eating disorder, less than 6% are medically underweight. And so we have to shift this focus on that. Eating disorders aren’t just weight-related illnesses. We know that eating disorders come in all shapes and sizes. Welcome to Hope Starts With Us, a podcast by NAMI. My name is Daniel H. Gillison Jr. and I'm the CEO for NAMI, the National Alliance on Mental Illness. NAMI started this podcast because we believe that hope starts with us. Now let me explain that just a little bit for you. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories, and hope starts with us breaking the stigma. If you or a loved one is struggling with a mental health condition and have been looking for hope, we made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode with each conversation brings you into that collective so you know, as we always say, you are not alone. So today's episode is aligned with Eating Disorder Awareness Week. That is the week of the 24th of February through the 2nd of March. Now, according to a 2020 report from Deloitte Access Economics, nearly 29 million Americans will experience an eating disorder in their lifetime. 29 million. And additional research suggests that eating disorders have the second highest mortality rate of any mental illness, with nearly one person dying every 52 minutes as a direct result of this illness. So one every hour. Our guests here today are here to shine a light on eating disorders. So, so happy to have Johanna Kandle here, the founder of the National Alliance for Eating Disorders, and after recovering from a long battle with various eating disorders, decided to start this organization. Johanna brings information, awareness, and support to hundreds of thousands of individuals internationally. So we're talking about worldwide, not just domestic U.S., but across the world. She facilitates free weekly support groups and advocates for change on local, state, and national levels. Welcome, Johanna. Now, Alexandra Miles; she is a producer, actor, nonprofit founder and CEO of PROJECT BLACKBIRD. She tours college campuses and Fortune 500 companies to address mental health stigma in underrepresented communities. Johanna, you spent the last 25 years building an alliance to support people living with eating disorders. In your experience, what is the journey to recovery like when someone lives with an eating disorder? And building on that question. Can you explore with us some barriers to recovery? Thank you, first and foremost, Dan, for inviting us here and holding this conversation about eating disorders. I've been around many tables with you over the years, and something that is always so important to me is ensuring that eating disorders are part of the general mental health conversation. So I think that's a really important place to start, is that eating disorders are not a disorder of choice. They're not a disorder of vanity. No one wakes up one morning, looks out the window and says, it's a beautiful day in insert city. I think I'm going to have an eating disorder today. And yet I and Alexandra and so many humans that will experience eating disorders are made to feel that way. And so a lot of the work that I've done over the last, I mean, now I can say, quarter century and it just like scares me to say that, but I have so much gratitude for the ability to do the work that I do is to really ensure that we hold conversations like this. Like, for me, my eating disorder started when I was eleven and a half, and when you look at all the causes that contributed to the development of my eating disorder, it's really important for individuals to know that these are brain-based illnesses. They are genetic in nature and the environment and temperament and all other things that create that perfect storm led to me and the 1 in 9 Americans that will experience an eating disorder in their lifetime. And so for me, I had eating disorders run in my family. I struggled with anxiety for as long as I can remember. I was a perfectionist, a people pleaser. I had all of those temperaments and traits that seemed very in line with humans that have eating disorders. I was a ballet dancer and then I went on a diet. So all of that happened, that perfect storm that happened. And for me, an innocent diet at the age of eleven and a half years old, that pretty much everyone will go on a diet in their lifetime, to me, very quickly turned into an almost life-threatening ten year battle with various eating disorders, including anorexia nervosa, bulimia nervosa, binge eating disorder. Now, what is more known at that at this point is ARFID which didn't have like a classification when I was struggling and my story really did shape. My story became the blueprint which is now the National Alliance for Eating Disorders, which is now the leader in the space when it comes to referrals, support, and advocacy for eating disorders. Because I wasn't able to get access to care, my family didn't have the money, my managed care didn't pay for treatment, and I wanted to talk to that seventh grade me that didn't feel like I could take up space, that I could be seen, that I could be heard, and I wanted to disappear. And I just wanted to do something when I got-- when I did find recovery, I wanted to pay it forward. I wanted to talk to one person and sort of create a crack in the armor that keeps us so stuck in the insidious disease. You know, thank you for sharing your lived experience in recovery and what your family navigated. And also being a ballerina. I'll just mention my wife was on toe and, she danced for a number of years, and I would look forward to you educating me, about her experience, because I do remember having to meet her at a hospital after she fainted. And it was because she changed her diet rapidly as she was on toe, dancing and performing, and, was very concerned about, all the things that dancers and ballerinas have to be concerned about. So we probably didn't label it that then. We were dating then. But I get a call from the hospital to come because, you know, Barbara has fainted. At a store, not at a performance because I never missed a performance. But I want to learn through this conversation. So I just wanted to share that a little bit as well. Now, in line with the Eating Disorder Awareness week theme of unifying through community and connection, would you explore some ways community can help one through recovery? What are those suggestions look like? Yeah, and I think that that is such an important part of this conversation, because eating disorders are riddled with shame and stigma in isolation. And when you are struggling with this, and I would say venture out for so many other mental health disorders, right, with substance use, with depression, with anxiety, it's shrouded in isolation and loneliness. And we know that when there is, it perpetuates itself. And so, so often I have this conversation, whether it's in one of our support groups or in any of the work, the advocacy work that I do, is that healing really does happen in community. And for me, because I wasn't able to get access to care and I wasn't able to get the services that that I needed, I actually found myself going to AA meetings at the beginning of my journey of recovery. And it wasn't because alcohol was my drug of choice per se, but I wanted to be in a space where someone could look at me and say, “me too.” Or having this language of understanding, of connection, of community. So that actually became really the backbone of so much of the work that we do at the Alliance. We have free therapist-led support groups that happen all times during the day, every day of the week. But really, this idea of, you know, we don't have to walk this journey alone, nor should we feel like we have to do it on our own. We would never tell anybody with a physical illness or ailment that, you know, you broke your arm, you have to will it to be fixed. We're not going to give you the help. We're not going to give you the support. But if you have the willpower, your arm will be fixed. And yet so often and I would probably say you see this a lot at NAMI in general, but it's this idea of because your head is above the neck, you should be able to do it. And so to me, healing and community healing and connection allows people to show up as they are and to see that they're not alone. And when you have that person or group or community around you that's taking those steps, it's just a little bit easier to do it. And so this Eating Disorders Awareness Week, I, alongside 32 different organizations called the Collective of Eating Disorder Organizations, came together and we decided that the theme was going to be unifying through community and connection. This Eating Disorders Awareness Week, really working off of last year's theme of healing and community, because we know that you are not supposed to do or walk or experience this journey alone. Thank you. And I'm going to come back to you on a little bit about what you shared in terms of there were a couple of things that you mentioned earlier on about anxiety, about depression, and I'd love to hear more about how they are actually portrayed. And actually, I want to be careful that I use the right language. And if I use the wrong language, you both are the SMEs. You're the subject matter expert. So correct me while we're on this podcast because it will help so many others. But I do want to come back to that. And right now I'd love to go to Alexandra and have you tell us a little bit about PROJECT BLACKBIRD and specifically how the project helps to fight stigma around eating disorders. What is it? Why are you doing it and how do you see it manifesting itself and helping others? Well, first of all, I want to point out, Johanna, thank you so much for everything that you shared, for taking your own experience and your own story, and actually using that as a way to connect with others and help them realize that they're not alone. And everything that you said, I was so excited hearing it on this end, because everything about community, about the breaking the stigma on your end, everything was just so important. And I hope everybody really was listening to all of those points, because we are not alone as providers of care, as those struggling, as those trying to end the stigma. I mean, as the founder of PROJECT BLACKBIRD, as I work with different partners, even what I talk about in every single meeting that I have with anyone in this space is, look at how many of us there are out there that are providing treatment, that are providing care, that are trying to spread awareness. There are so many of us, because there are also so many that unfortunately struggle with this, and there's such a need and we can't do this alone, and we shouldn't be doing this alone, on either side of it. So whether you're struggling or whether you're a supporter as well, I think a key takeaway, community and that we're not alone. And just thank you for everything that you shared on that. There was so much that I can't wait to chat with you about, too offline, but on the PROJECT BLACKBIRD side, PROJECT BLACKBIRD, the organization that I run-- I started the organization, I was not in the business space by any means. I was an actor. And then following being an actor was a filmmaker, and I was actually at a grad school program where I was learning about film, and I wanted to create a story about somebody that was a hidden hero in my life. And that individual was Blackbird, a young woman, Kendra Williams. We came from very different communities. We had very different diagnoses, different struggles, different traumas. But we met at a treatment center back in 2018, and she was inspirational to me. She barely spoke a word. She was very silent. That was her way of deflecting from her own eating disorder. And I was constantly looking at others and I was constantly saying, well, how can I help and what can I do? And trying to understand everybody's struggle. And ironically, that was my way of deflecting from my own disorder as well. I was so unable to acknowledge what was happening internally that I tried to focus my energy outside. So we could not be more different. But we actually connected really, really deeply in treatment over this shared experience of just being completely paralyzed. Honestly, we were in this space where we wanted to recover, but we really didn't, all at the same time. We felt stuck and numb, and we won't ever leave here and we won't ever get better. And we were terrified because we didn't want that. Deep down, we wanted to recover. As you said, Johanna, nobody asked for an eating disorder. It is debilitating. It is not living. I mean, it really is not. It's, it's awful. But the reality is that it happens to many individuals that don't even realize they're going through it. And so anyways, we both felt the exact same way deep down, even though we looked very different, came from very different worlds. So created this film about her, but about really connection. These two that meet that are very different. And then I realized that I didn't create the film for it to win splashy awards. I created the film because I wanted someone to watch it and realize that they were not alone and empathize with what lies behind an eating disorder. Because, again, like Johanna said, it's seen as this vanity disease. And even if it comes from quote unquote vanity, how awful is it that in this world we feel the need to look a certain way in order to be loved and in order to be belonging? And instead, can we have compassion for that? So what that turned into the film is the organization now, PROJECT BLACKBIRD, that uses the film as a way to engage students and different populations around the country, and it's become a program where we screen the film. We put together a panel with different public figures and role models, different actors, different NFL players, or singers, or even just experts in the field that are role models to these students and to these community members. And we have them just share their story. Not necessarily expert advice, but just being honest with the fact that they struggle or have struggled. And, and the point behind that is to let these kids know and these community members know that it's just part of being human. It's the human experience. We're going to struggle because we all have minds, and a mind is a body, too, you know? It's all part of our existence. And so struggling is just being human. And we want to make it safer for these students to say, I'm not okay, and I need help, and that's okay. And that's safe to do, because in a lot of communities, there's so much shame and silence. Shut shame over here as our hashtag. But there's a lot of shame and silence that is experienced by a lot of different community members, and we just want to get rid of that. There's no point in being ashamed because it's a part of the human experience, the culminating piece of our event. Bringing together the community, we set up a resource fair in the back of the room with national resources. NAMI, you are our partner, and Talkspace, and a few different treatment center resources that we partner with on a national level. But then we also bring in the local resources. Who is available to these students on their campus, in their neighborhood, in their backyard, who is helping with subsidized care and support for those that might need it financially? We set up that space, and then our organization pays for a year of therapy to get them started on their journey, and that's done through Talkspace. So that's kind of the initiative of our organization, is to travel to these communities, spreading awareness and access to care and bringing together the community. Because we can't do this alone either. We need all of the support that is there to just connect with the students and with the community members. Thank you. Alexandra. What you're doing and the medium that you're using for and with young people is so powerful in terms of that medium. You know, I always talk about leadership, tone and execution. The leadership that you're demonstrating, the tone, and the temperament that you're setting, and almost setting a judgment-free, you know, environment and also your early experience with Kendra, a peer-to-peer, you know, coming from different backgrounds, it is peer-to-peer. It's so healthy. And then how you're operationalizing it is fantastic. You know, as you've both said, about the brain and the neck up. You know, David Satcher, our, 16th Surgeon General, he coined the phrase that the World Health Organization uses now,“there is no physical health without mental health.” Now, if we can go full circle, let me ask a layperson's question. You know, you both have kind of led me into something. I've been talking to our staff and others about that. We are a cosmetic society. We judge the book by its cover. You don't get into the table of contents in the chapters, and that's what you're doing. How do you have the young person realize that what they are experiencing is an eating disorder? What's the “aha” that they-- “Oh, that's what I'm navigating. I have an eating disorder,” because they don't know what they don't know, no matter where they are in their life. How does that happen that all of a sudden I now know what I am experiencing. I now know what I'm navigating. How do you both help a person come to that discovery? Yeah, I mean, I can I can hop in. I think number one is awareness, because I think that one of the biggest obstacles that we are experiencing is this archaic stereotype of who develops eating disorders and what they look like for so many years. And I think even to this day, we have this belief system that individuals that experience eating disorders are female identifying. They are young, they are typically Caucasian, they're heterosexual, and they live in a very small body. They come from a middle to upper class family, when in actuality eating disorders, they do not discriminate between age, gender, race, class, body shape and size, sexual orientation, ability, neurodiversity. And the other thing that I think we need to, like, move past is out of everyone who experiences an eating disorder, less than 6% are medically underweight. And so we have to shift this focus on that eating disorders are just weight related illnesses. We know that eating disorders come in all shapes and sizes. And something that is truly remarkable, the alliance, one of the services that we provide is we are the resource for every single major social media network. So if you type in eating disorders on Meta or TikTok or YouTube or Snapchat or Reddit, our information comes up. And when we look at all of the numbers that come into our helpline, which we hold the national helpline, about 38% of those calls are from male identifying individuals. However, when you zoom out and look at all of our calls in general to our helpline about 78% of them are for female identifying individuals. The reason why I mention that is because of that stereotype. Individuals that are male, individuals that are Black and brown, individuals that live in higher weight bodies, they might not connect to the fact that they have what we call an eating disorder, because for so long they have been told that it looks a certain way. So when going back to your question, our first line of defense needs to be education and awareness, which is so much of what so many of us organizations are doing. The next thing that we have to share is that there is help. There is hope. Recovery is possible. When I started my recovery journey, I had never known anybody who had recovered from an eating disorder. And I'm aging myself right now. The only person I knew of was Karen Carpenter, who died. That's a direct result of her eating disorder, and I was struggling at the same time as the actress Tracey Gold, who was on Growing Pains, and she just went away from TV. And so it's so important to have voices, to have representation not only for the person that's struggling, but we work very closely with families as well, because when your six year old or ten year old or 90 year old parent or grandparent is diagnosed with an eating disorder, there's this idea that once you have an eating disorder, you will always have an eating disorder, and that there is no help and that there is no hope. We are here to say that it's never too late to recover. And there is help. There is hope. Whether you believe in recovered or whether you believe in recovering or recovery, or healed or in remission, whatever word, we have to do a better job at eliciting hope. I love that this podcast is all about hope because as a loved one who's supporting a loved one, it's some of the scariest stuff. So we need to be doing a better job at not only education awareness, but connections to care, resources, and recovery, and hope. Thank you very much. This is really profound, and I want to make sure we give you both the opportunity to share with the audience, that what you want them to know and what they need to walk away with. So, Alexandra, let me ask you this, and thank you, Johanna. Let me ask you this. Someone listening to this podcast, excuse me, and they're like, I think I may have an eating disorder. What do they do next? Walk us through that, if you don't mind. So one, the response of eating disorders do not discriminate. And all of the statistics, the very true and incredible statistics that Johanna shared, absolutely accurate. And we see it, from less of a statistics standpoint, just from a person-to-person standpoint. We see it as we go on to the majority, actually, of individuals that come up to me in the back of the room and are honest for the first time about struggling with food or struggling with their relationship with food. The majority of them are men. Maybe a body that hasn't been impacted yet by their eating disorder or impacted at all. And might never be impacted. I think what a lot of individuals don't realize is that an eating disorder doesn't look like necessarily what we read in a textbook in high school. That was my experience. Was, well I can't have an eating disorder because when I was in eighth grade or ninth grade and I learned about this, it said that anorexia was x, y, z, you know, and so on. It was a very black and white definition. And the reality is it doesn't look like that. And it doesn't appear the same on every body, and it doesn't influence everybody in the same way. So a lot of the individuals that we see in the back of the room are not that stereotype definition that Johanna gave earlier. And so I think just having awareness around that, first of all, but when somebody asks me as well, when we present this tour, when someone asks me, how do I know if I have an eating disorder? My response is generally, if you feel like your relationship with food is causing you pain, hardship, stress, anxiety, hurt in any way, then it's something to address. And I'm not a clinician. I'm not here to say you have an eating disorder or you don't. But if it's making you unhappy, if you have reoccurring thoughts about food, if it's influencing your life in a way that you don't want it to, that's just first step. Take a look. Get curious. Become curious. I personally think therapy is a wonderful place to start. To start just exploring and processing what you might be going through. Because an eating disorder looks different for every individual. I think being able to even just explore that yourself and feel empowered to recover on your own as well, you have to want recovery is the other piece. You have to want to be in a space of happiness and health to really start that transition to recovery. So I think being able to lead in your own recovery by starting with therapy is a really nice place. Now, there are a lot of tools out there. There are treatment centers, there's online therapy, in-person therapy, and again, that doesn't look the same for every individual. What works for one person might not work for the other. So in my space personally, in the tour that we present, that's why we have the resource here in the back of the room. Because while we do cover a year of free therapy online with, Talkspace therapists, that might not be the answer for someone. Somebody might need a higher level of care. They might need to go to residential. They might need an inpatient treatment center. They might need a dietitian and setting up their own team. It could look different for every individual. But I would say the first thing is just get curious on your own. And by getting curious on your own, I think, as an individual, you will feel empowered then to really own your own recovery and fight for it. So getting curious on your own, I'm going to come back to that, because I want to ask you to share your websites and the information, so that people know where to go to get curious and to go look up for resources so we can type them. But I want to also give you the opportunity to verbally share them. So let me go back to something that I heard earlier. First of all, you've turned your pain, and we do this at NAMI and most of our folks that work with us, our executive directors, our volunteers, our staff, they've all turned their pain into purpose. And their purpose becomes their passion. And all three of those pieces become the power. And that's what you guys have and what you demonstrate in your body of work. And I want to circle back and use you as my coaches and say that there's times when I think I do binge eating. I may have 20 bags of chips in a chest that I've gone to the store to buy when I'm having a moment and I'll go buy them. And then I know that at some point in time when either my energy is low or my mental fatigue is high, then I just will sit and eat bags and bags of chips. That might just be binge eating. That might not be an eating disorder. I don't know what it is, but I experience it. So there's probably some other things. You know, there's this thing about binge drinking, but there's binge eating and there's always some other labels for it. I don't know. But to your point, Johanna, you said that only 6% of those who have eating disorders are less than their recognized body weight. So we have a misnomer in terms of what we think it is from the look of it. You mentioned depression, anxiety, and I think there was another there was a third. Tell us more about the mental side of it, because I do think when I'm a bit depressed, that's when I don't care about, a really healthy meal. I go and grab chips. Yeah. So the way that I like to look at it is that, you know, eating disorders don't happen in silo. It's not the sole individual in the car. So typically it's anxiety that tends to come up first. So anxiety, depression. We also know that trauma, specifically trauma with post-traumatic stress disorder you will see can be a major trigger pull for the development of eating disorders. We know that substance use. We know that personality disorders. We know that the myriad of mood disorders, they all are going to be, you know, standing hand-in-hand with the eating disorder, which is why it's so important. Alexandra talked about treatment is when you have a multidisciplinary approach to a treatment and you're not just treating one at a time, because what will happen is you will play the worst game of whack-a-mole like if someone is recovering from substance use and eating disorders, if you're just focusing on one and totally alienating the other, of course the other one is going to come up while the other one comes down. And so eating disorders have to be part of the general mental health conversation. And by keeping it out, we're doing a very big disservice because as you started this conversation and I hold in my heart that every 52 minutes someone dies as a direct result of their eating disorder. And of all the people that have eating disorders, almost 75% of them will never have access to care, will never be able to see a therapist, will never be able to get those higher levels of care. And so they're struggling in silence. And so that's why, you know, we talk about why you need to support all of it is the Alliance offers these free therapist led support groups and many of them to your point, Dan, about using your personal experience to fuel, to pay it forward. About 80% of all of our clinicians that run our support groups are humans of lived experience. So you have that peer-to-peer connection with that safety of having clinicians in the space. And for our more specific groups, for our BIPOC support group, for our queer support group, for our folks in higher weight body support group, our clinicians hold that same lived experience because it adds that level of safety, that peer that you were talking about. So all to say, for us to look, like, have those horse blinders on and say, we're just looking at eating disorders for eating disorders, is doing a huge disservice. Then the last thing that I will just hop in is when you talked about, like, the chips is a lot of times we will exhibit traits without having an actual disorder. We know that food is a very, for, and this is going to come from a place of privilege, so I will say this. It's an accessible entity that we have been hard wired to go to in times of happiness, in times of sadness, in times of anxiety, in times of uncertainty, right? Like it's been hard wired in our brain that in every romantic comedy, when the girl is dumped by the boy, what does she do? She goes to the freezer, gets that ice cream, and starts eating it, right? And so we celebrate because of good times. We celebrate because of bad times. Hell, I'm going to endure because of your bad time, right? Like, so we have to really take a look at it when it becomes a disorder and not just, you know, a trait or something that you do every once in a while is when you can no longer do life. So if you're listening and you're trying to decide, is this an eating disorder? It's when you cannot do life anymore. And if you get to that point, reach out. There are people and places that can help. We have our helpline. We have clinicians that pick up our phones at our helpline. We have groups. There's amazing organization like PROJECT BLACKBIRD. There's so many resources there. So often our families get support from NAMI and the Alliance. So you don't do this alone. So Johanna, thank you for that. And you just mentioned the fact of every 52 minutes, and don't do it alone. And there's resources out there. Would you share some of your resources? And then I'd like to go to Alexandra to ask her to share her resources as well. Yeah, absolutely. So the National Alliance for Eating Disorders has the national helpline. We are open Monday through Friday from 9 a.m. to 7 p.m.. And the thing that makes our helpline different, as I share it, is we have licensed and specialized clinicians that pick up the phone so we can absolutely talk to you if you're looking for us for our treatment. We have the largest treatment finder called findedhelp.com. We also have free therapist-led support groups. We have 21 weekly that are all like led by therapist. Our helpline is (866) 662-1235. And our website is allianceforeatingdisorders.com. And we're here to help. You do not have to walk this journey alone. Thank you Johanna. Alexandra, tell us about your resources. I will just celebrate again what Johanna said, but add to it that with the co-occurring, looking at an eating disorder is not about the food, but what lies behind it. And when you do that, you realize that we are all more connected than we realize and what's behind it is usually something that could be experienced by someone experiencing depression, anxiety, alcohol addiction, suicidal ideation, so much of it comes from, like Johanna said, trauma, childhood experience, the way that we've learned to speak to ourselves, the messages that we've learned to give ourselves, our feelings of self-worth. I mean, there's so much at the baseline that is similar and common ground amongst them. So my hope is that, similarly, that eating disorders are not placed in this separate kind of bucket, but it really is. They're all so closely tied together. And in my opinion, a lot of it comes down to connection and belonging and or this comparison culture where we're constantly looking at our peers, our parents, our role models, those around us. Where do I fit in? Where do I belong, do I? And when you can find that you have a place just because you are you. You are human. You are belonging. You are connected. When you really feel that, I think that's where a lot of the healing comes from. But just this idea that we are all really connected and in the mental health space to all of those are very connected as well. And they come from something much deeper and then on the resource note, website for PROJECT BLACKBIRD, please come and both check us out and bring us to your schools or schools in the area. We want to be connected with the colleges, the high schools we visit as well. But www.projectblackbirdinc.org. And our Instagram is @projectblackbirdfilm. And when we're connected with a school, whether it be a high school or a college campus, we will find a way to come to that campus. We will find a way to get to those students, to bring free therapy to those students, to bring the resources to those students, and to bring the voices there as well. And we would really, really love the help and support getting there. Alexandra and Johanna, thank you. I do want to ask you, you mentioned suicidal ideation. You mentioned trauma. You mentioned post-traumatic stress disorder, substance use disorders, anxiety, depression. I want to ask you about some of the current events, right now and from the standpoint of, Los Angeles and all of the displaced families and, and the trauma that goes with that, the incident in the French Quarter. I'll throw one in myself. I’m from DC just because I want to honor this piece, too. But the plane crash that just occurred, too, in Washington, DC, and the traumas of that. Yeah. My brother-- my brother's good friend's daughter was on the flight. So thank you for sharing that. And these are all incredibly traumatic events, from those experiencing it, those directly impacted by it, that trauma. Can they develop an eating disorder? What does that look like? Johanna, you said that yours started at 12, but I’m kind of asking you, how does this manifest? And can trauma be one of those things that at some point a year later, two years later, 18 months later, so on, wakes up and it goes to something you said that I wrote down, “you cannot do life anymore.” So you're the coaches for us. So would you share your insight? Yeah, I think we have to definitely, you know, remember that these are biologically-based brain illnesses. So as far as of all of the contributing factors to the development of eating disorders, about 50-80% is the genetic predisposition. If you've had a parent or sibling of a parent in your family that has had some type of disordered eating or eating disorder, and then what happens is you need to fall into what's known as negative energy balance. So you need to be in this state of receiving less caloric intake than what your body needs. Now to your point, Dan, of like this trauma, and I will tell you, our phones have been nonstop from calls from individuals that had either never experienced an eating disorder before or was in a recovery area, and then the fires happened and then it's caused a relapse for them. So what happens is you have that genetic predisposition, you have that anxiety. If they're not eating what they need to do. And remember, the number one behavior that leads to binge eating is restricting. So even individuals with binge eating disorder restrict as well. And then you get into that negative energy balance, the genes fire, and then the perfect storm happens. And the best way that I can describe this is four years ago, five years ago when the world shut down, when Covid started to happen, this collective trauma, collective anxiety, no one knew what was happening. I remember having a meeting with our clinical director the weekend before the world shut down and said, this is a breeding ground for development of eating disorders or the relapse of an eating disorder, because no one knew what was going to happen. This high amount of stress, anxiety unknown for individuals, maybe not being able to get foods that they feel safe with. For other individuals, being left in a home with, you know, a lot of their trigger foods, all of that. Now, what we know is when you look at the research, there was 104% increase in hospitalizations in adolescents from the beginning of the pandemic till now. We had a 130% increase on our helpline in 2024 over 2023, where we had a 200% increase on our calls in 2023 over 2022. So you talk about this collective trauma. You talk about this collective anxiety. Of course, you're going to see the development of eating disorders and this increase of eating disorders, substance use, suicidality. Individuals with eating disorders, specifically anorexia nervosa, have an 18 times higher chance to die by suicide than their peers. We're talking about individuals with eating disorders have a very, very high suicide rate, a very, very high parasuicide rate, and very high rates of suicidal ideation. And so, again, we cannot be sweeping this under the rug. We need conversations. Thank you to NAMI and to you, and for your willingness to bring awareness to a topic that so often is left out of the conversation because people have discomfort talking about it. But you know what, the only thing that happens when we don't talk about it is that more and more people are struggling in silence. And we don't want folks to struggle with silence. Go ahead, Alexandra. Thank you very much, Johanna. I was just going to add on to that too, and say that I almost want to present the idea that let's not wait until it hits rock bottom with the eating disorder, with binge eating, with restriction, anything of that nature. I think with these traumatic events, as you mentioned, whether it's with alcohol or food, I think the consumption can be directly related to emotions. Sometimes it is, sometimes it isn't. But I think there is an emotional tie in and I know, at least for myself, when I experience certain traumas, when either I go against my core identities or values, if I do something that, for example, for me, if I lie or if I'm dishonest, then I find my emotions rise and I experience binge eating. And I think a lot of again, consumption comes as a result of emotions. But is it tied to shame or guilt afterwards? How do you experience that episode? And I think even if you're not unable to live, if you're experiencing true shame afterwards, that is impacting even a part of your day. If you're seeing that become a pattern or a habit, I think that might even be a wonderful time to seek help before you hit that point of rock bottom. But I think also realizing that these traumatic events maybe questioning or getting curious again about, okay, it has impacted my relationship with food in this moment. Is this something that is impacting my life at large? Is this something that is a one off episode? Is this just that I feel heightened in this moment, but then after it happens, am I okay? Is it okay? Wow, that was unusual for me. But okay, we're fine. Or is it? I am bad because I did that and now the rest of my day can't occur. Or you know, how are your thoughts shaping after the fact? Yeah. Thank you for sharing that. You've shared some incredible statistics and some incredible insight. And, I really appreciate that. And we always wrap up with one last question. As we conclude, the world can be a difficult place, and sometimes it can be hard to hold on to hope. That's why with each episode, we dedicate the last couple of minutes of our podcast to a special segment called Hold On to Hope. Alexandra, can you tell us what helps you hold on to hope? What helps me hold on to hope are these moments of laughter, honestly, and my stubborn mornings. Mornings are everything for me, and when I wake up in the morning, every time I close my eyes, thinking that I don't have hope, that it's the end for me, that I can't go on, I can't move on, I have stubborn--what I call stubborn mornings and I almost get angry at them sometimes when I'm in a bad place. But I wake up in the morning and everything feels like it's fine. And the sun is shining and I'm like, darn, it's good. And then I'm like, no, it's a good thing that it's good. But really it's my mornings. And then those giggle moments. I have these moments with my mom and with a few of my close friends, where you start giggling and laughing about something, and then you realize it's not even funny, but you just can't stop laughing. And it's something just so uncontrollable. And sometimes it's more rare than others. But really, that's hope for me because I know those moments exist and I know they're going to exist again, even when I'm not feeling it, they're going to happen again. Thank you for sharing that. And that's wonderful. I would tend to believe those giggle moments become very viral. So yeah, very cool. So, Johanna, what helps you hold on to hope? I think for me is, this one story that is permanently etched in my mind. I was told for 20 years that I wouldn't be able to have children as a direct result of my eating disorder. And nine years ago, I, a little over actually, eight and a half years ago, I found out that I was pregnant and that I have a daughter. Her name is Annabel. She is the light of my life. And I remember this was the day after Thanksgiving, and somehow I convinced my husband to go to the mall with me, as no human should ever go to a mall the day after Thanksgiving and friends of mine were watching my daughter and we were walking. And of course, as all new parents do, even though we've promised ourselves not to talk about our kids, that's all we talked about. And I looked at my husband and I said, you know, she is the best thing that I ever did, hands down. And my husband, who has seen me in some of my worst times, he stopped me and he said, she's pretty incredible, but I'm going to challenge you on that. So your recovery is the absolute best thing that you ever did, he said. Without your recovery, we wouldn't be together. Without your recovery, we wouldn't have Annabel, and without your recovery, we wouldn't have the Alliance. And it took me a back and I think about how hard recovery was. It was the hardest thing I ever did. And if anybody out there is listening who's struggling, please know that we see you and that the journey to recovery is not going to be sunshine, bunnies, and rainbows. You don't recover to utopia. You recover to life through good and through bad. Recovery is messy and it's painful and it's overwhelming and it's so incredible because no matter what, it is the best thing that I ever, ever did. Because now I get to live my life. I get to show up. I get to be in spaces and places and rooms where sometimes I feel like that highlights, you know, what doesn't belong. And I'm like, “Over here, I'm here. Hi!” And the truth of the matter is, is that that is what you hold on to hope for. And if you can't hold on to hope in this moment, let your loved ones, let your supports hold on to hope for you now. Because we promise it's going to get better. So do it for any reason. Any reason. For your pet, for your loved one, for your job, for school, just take that step and believe in life beyond eating disorders. Wow! Thank you so much for sharing and congratulations to you on navigating the most difficult, hardest thing that actually allowed you to move forward and show up in spaces and places and to be blessed with the wonderful young lady who's now about eight. So fantastic. So as we close this out, I'd like to just say this has been Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. If you are looking for mental health resources, you are not alone. To connect with the NAMI Helpline and find local resources, visit NAMI.org/help. Text “helpline” to 62640 or dial 800-950-NAMI (6264). Or if you are experiencing an immediate suicide, substance use, or mental health crisis, please call or text 988 to speak with a trained support specialist or visit 988lifeline.org. I'm Dan Gillison, your host. Thank you for listening and please be well.