00:00:00

Intro

00:02:59

Johanna’s journey from eating disorders to recovery

00:09:19

Her relationship with her father, a Holocaust survivor

00:14:14

How ballet impacted on her eating disorder

00:19:57

Why she quit ballet

00:24:58

Eating disorders aren’t just about food

00:34:00

How she started the National Alliance for Eating Disorders

00:41:56

How Johanna manages her own mental health

00:45:15

The role of genetics in eating disorders

00:51:38

Johanna’s drawer analogy

00:55:59

The importance of awareness + celebrating small wins

01:01:16

Johanna’s sinkies + floaties analogy

01:07:04

The ‘ignorant stamp’

01:13:57

Writing an ad for your healthy voice

01:20:09

My recommendation for this week

00:00:00

Intro

Chris Sandel: Welcome to Episode 260 of Real Health Radio. You can find the show notes and the links talked about as part of this episode at www.seven-health.com/260.

Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist who specialises in recovery from disordered eating and eating disorders or really just helping anyone who has a messy relationship with food and body and exercise.

Today’s show is a guest interview, and today’s guest is Johanna Kandel. Johanna is the founder and CEO of the National Alliance for Eating Disorders and the author of Life Beyond Your Eating Disorder. She founded the Alliance after a decade-long battle with various eating disorders, and since founding the Alliance in October 2000, she has brought information and awareness about eating disorders to hundreds of thousands of individuals nationally and internationally. In addition, she facilitates weekly support groups, mentors individuals with eating disorders and their families through their treatment and recovery, and helps thousands of people to gain information and to find the help they need.

As a passionate advocate for mental health and eating disorder legislation, Johanna has spent a lot of time meeting with numerous members of Congress and was part of the first ever eating disorder roundtable at the White House.

I’ve been aware of the Alliance for a while now, but it was only recently that I read Johanna’s book, Life Beyond an Eating Disorder, and I really enjoyed it. So I wanted to have her on the show to talk about it. As part of the episode, we talk about Johanna’s eating disorder and what her recovery looked like. She quit ballet and started studying psychology. We talk about how she founded the Alliance and how this has grown and changed over the last 21 years. And then we cover many topics from her book and some of the wonderful exercises and analogies that she shares. There’s a lot of practical ideas with this one, and Johanna is clearly someone who’s very passionate about eating disorder recovery.

And there is so much of the book that we didn’t get to cover, so if you enjoy this conversation and the ideas that she shares, then I suggest checking it out. I’ll be back at the end with a recommendation, but for now, let’s get on with the show. Here is my conversation with Johanna Kandel.

Hey, Johanna. Welcome to Real Health Radio. Thanks for taking the time to chat with me today.

Johanna Kandel: Thank you so much for having me. I’m really excited to be here and to have this conversation.

Chris Sandel: There is a lot that I want to chat about with you today. I’ve read your book, Life Beyond Your Eating Disorder, which I really enjoyed, and there’s lots of exercises and analogies in that that I’d love to share with the listeners. And then I also want to chat about the Alliance for Eating Disorders and everything that the Alliance is doing.

00:02:59

Johanna’s journey from eating disorders to recovery

Just as a starting place, do you want to give listeners a bit of background on yourself? Who you are, what you do, what training you’ve done, that kind of thing.

Johanna Kandel: Sure. As you shared, my name is Johanna. I am the founder and CEO of the National Alliance for Eating Disorders, which for the first 21 years of its life was the Alliance for Eating Disorders Awareness. We have grown into the largest US-based non-profit organisation that does education, referrals to care, and support for individuals experiencing eating disorders as well as their loved ones.

I came to this work as someone of lived experience. For over a decade, I experienced my own eating disorders – and I say eating disorders because it wasn’t only one type. For many folks that will experience these disorders, it seems to never just be one. So my struggle started at the age of 11-½. I struggled with restricting anorexia nervosa, and then it morphed into bulimia nervosa and then binge eating disorder. Then at the tail end, really worked itself into orthorexia.

The thing is, I experienced an eating disorder at a time where there wasn’t a lot of conversations being held just like this. There weren’t humans like you, Chris, that were amplifying this message that individuals experience eating disorders, that there is help, that there is hope, that people can and do recover.

During my day – there’s a channel here in the US called Lifetime, and it’s a very feel-good TV channel, and the only time that we ever talked about eating disorders was these after-school specials. Something that was really unfortunate was it was the same story being told. The three stories that there were, they were all very similar. They all adhered to this archaic stereotype of who developed eating disorders and what they looked like. As you can imagine, it was a very thin Caucasian middle- to upper-class female-identifying young woman.

For some of my experience, I did relate to that, very truthfully. But for a lot of my experience I didn’t. The only person that I had ever known that had experienced an eating disorder that had talked about it was Karen Carpenter. So many people listening to this podcast probably don’t even know who she is. A beautiful, amazing singer who lost her life to her eating disorder. That’s really the message that I had: that’s what people with eating disorders do; they would lose their lives or they would just struggle forever.

Unfortunately, due to many circumstances – one that my family didn’t have the funds to pay for treatment out of pocket, because insurance here in the US was very terrible, and still is to some extent, at covering the treatment of eating disorders – I never got access to care. Also, because of the lack of education from our healthcare providers, no-one interjected and said, “Hey, I think what’s happening is that you’re experiencing an eating disorder.” I was actually in the hospital at the age of 17 in the cardiac care unit, and no-one said the word ‘eating disorder’ to me. They didn’t find it odd that here I was, 17, and everyone else on the floor was in their sixties, seventies, and eighties.

What makes it so unbelievable is that our clinical director now at the Alliance, who’s my dear friend and mentor, was actually on staff at that hospital and was one of the few psychologists that worked in hospital settings that worked with eating disorders. There were so, so many opportunities, Chris, for me to have intervention, for me to get access, and it never happened.

When I finally started reaching out for help – unfortunately, my story is very similar to a lot of people. I went to a clinician at a community care organisation who had no experience in the treatment of eating disorders and looked at me and she said, “Johanna, I’m really happy that you’re here. I just need to tell you that you’re going to be struggling with your eating disorder forever. Once you have an eating disorder, you always have one.”

I understand where she was coming from on some level. I want to give her that. But in that moment, when you have no hope and you have this little flicker of “I’m going to reach out and ask for help”, as you can imagine, in that moment she completely squashed that hope. I basically said, “Well, if I’m not going to get better, then why am I here? If I’m going to be struggling with this forever?” So I continued to act out. Concurrently, like many people, I had a co-occurrence of anxiety. My anxiety was there from as much as I can remember. Depression. I did have two suicide attempts in my journey.

But I will tell you that I finally was able to connect to a therapist who had lived experience, who was specialised in the treatment of eating disorders, and it was a game-changer for me. A literal game-changer. I really, really thought – because my brain was so black and white, was all extremity, it’s all or nothing, this or that – that if I was going to be in my eating disorder, I was going to be fully in my eating disorder. If I was going to be in recovery, I was going to be fully in recovery.

But my journey to recovery was not a linear process. It wasn’t a straight line. It was such a mess, and it really, truly was one step forward, three steps back, two steps forward, four steps back. But it wasn’t about the steps back. It wasn’t about the trips and the falls. It was about what happened after the trips and the falls. It’s what happened if I got up and when I got up, with the help of my supports.

That’s truly where my recovery started. I do consider myself recovered. That is the terminology I connect with personally. That doesn’t mean that anybody else needs to, and hell, we don’t even have a definition of recovery. But for me, I’m living my life completely beyond my eating disorder, and it’s now been 23 years. And here I am.

00:09:19

Her relationship with her father, a Holocaust survivor

Chris Sandel: Nice. That was a good snapshot to start with, and I’d like to fill in some of that a little bit more. I know in the book, you mention about your father being a Holocaust survivor. I just wanted to get a sense of how this played out in your relationship and how he saw the world and how he saw the world through you.

Johanna Kandel: Such a great question. Yes, my father is a Holocaust survivor. There is so much research on the effects of transgenerational trauma on individuals, how it plays out with the development of an eating disorder. There is such high incidence rates of children and grandchildren of Holocaust survivors that will develop eating disorders, substance use.

The way that it showed up in my house was that the Holocaust was always a part of my household, even though we never talked about it. A word was never – but it was felt. It was palpable. The way that it showed up in the terms of my father and I is my father – I love him very much – was completely void of any affection, any connection. There was only one way to be, and it was perfect, in his eyes.

When I was born, I was my parents’ only child. I was going to be the person that they fought so hard to survive through. They emigrated from Europe, they came here, they built a life. Very much first-generational story. But he wanted me to be a doctor, a lawyer, or a nuclear physicist. That was the three things. I have these memories, very few and far between, but when he would pick me up at school, it wasn’t just a jovial conversation. It was like, “Let’s do our multiplication tables. Let’s recite poetry.” It was always ‘you have to be the best’. When I would get a 98 on my test, it wouldn’t be “You got an A, that’s wonderful.” It was “Why did you get one wrong?” It was always this relationship. Never was compassionate, never gave me hugs, never gave me affection. So that’s really how it showed up in the context.

It started this narrative – and please know I’m not blaming my father on any level; it’s just the situation that unfolded in my household – it created this narrative internally that maybe if I was perfect, maybe then my father would say ‘I love you’. Maybe then my dad would say ‘I’m proud of you’. For me, it was be a perfectionist in every situation – in school and being a perfect child. And then for me, it was “Maybe if I have the perfect body, maybe if I have the perfect everything, maybe then it’ll be okay for me to be worthy of love and affection.”

Chris Sandel: Definitely. And I guess when you started later on studying psychology, starting to understand this at a different level.

Johanna Kandel: Oh, completely. And I will tell you – I fully believe, I should say, that I think everyone should be in therapy. I think it is the best thing. I don’t think there needs to be something wrong for us to go to therapy, just like how when you go to your doctor once a year, it’s not because there’s something wrong, hopefully; it’s because it’s preventative. It’s just to make sure everything is okay.

It’s actually still something to this day that we talk about in my therapy sessions, because I now have a daughter who he’s completely opposite to. He is so embracive and says ‘I love you’ and hugs her. I have to very honestly say that sometimes I’m like, maybe it really is me. This understanding of all the work that we’ve done together, all the work that he’s done – he’s nearing the end of his life – a lot of stuff has happened.

But you can know it in your mind – and I think so much for individuals experiencing eating disorders, they are the smartest individuals I’ve ever had the opportunity and the luck to meet, and yet there’s this disconnect between your head and your heart of I know what happened to him, and yet as an 11-year-old small child just wanting to be loved and say that you are loved, that you are supported, that your family is proud of you, there really was that complete disconnect. I worked very hard as an adult to try to mend that and heal that and get that connection.

Chris Sandel: Yeah. Those early years are so formative, and as you say, you can understand something intellectually, but to truly feel it in your bones is a different thing.

Johanna Kandel: Exactly.

00:14:14

How ballet impacted on her eating disorder

Chris Sandel: One of the other things that seemed fairly like a big component as part of your eating disorder – and maybe this is something that is a little mor stereotypical – is ballet. Talk about the ballet piece and how this had the role in your eating disorder.

Johanna Kandel: When I started walking, I walked with my feet turned in. I walked pigeon-toed. So my parents thought it would be a good thing to take me to ballet to give me poise, to turn my feet out. Much to their chagrin, I completely was enamoured with ballet. As a three- or four-year-old little girl, the epitome of what a princess is is a ballerina with pink tights and a tutu and tiara. I just loved it.

I happened to be given the gift of being a very good dancer, so I went to a professional academy at an early age and was dancing all the time and got opportunities to dance in New York during the summers at School of American Ballet and New York City Ballet. So there was a lot of pressure on me to be that successful dancer.

The summer between two grades, I remember I’d just come home from New York and I was in my ballet class, and I was with girls that were – because my class at the time was all female-identifying people – about four to five years older than me, just to give you an idea. The artistic director of the professional ballet company came in and said, “We’re doing a brand-new production of The Nutcracker. We want you all to audition to dance for the corps de ballet.” Then she concluded by saying, “But before the audition, we want you all to lose some weight.”

I was very young at the time. I didn’t know anything about weight loss. I had read some of my mom’s magazines, and at that time the big fad was everything was fat-free. Like, don’t eat fat. Fat was bad. Now I think it’s more carbs and gluten and all of that stuff. So my mother picked me up from ballet, I got in the car, and I told her that I was going to ‘eat healthy’. I was going to eat fruits and vegetables. At the time, I didn’t consume those things. And also, now being the mother of a very picky eater – my daughter is – it was like music to her ears. I mean, what parent doesn’t want to hear their child say, “I’m going to eat healthfully”?

This is where I say to people, the path to hell is filled with good intentions. I didn’t say to my mother, “I’m going to develop anorexia nervosa.” I just wanted to better myself. I wanted to dance, I wanted to get the role, I wanted to be successful. And if I had to lose weight, which I didn’t because I was so small compared to everyone else, I was going to do it. It’s this mentality of winning at all costs, doing whatever it takes to succeed that not only is super embraced by the ballet world – and I would say athletics and so many other areas – but also the characteristics of individuals that experience eating disorders also have those sets of rules internally.

That’s what happened. I started eating healthfully and moving my body a little bit more, and unfortunately I auditioned, and I was the only person in my ballet class that didn’t get the roles. They pulled me aside and said, “Johanna, you didn’t not get the part because you were not good enough. On the contrary, it’s just that you look so young compared to everyone else.” That was the first time in my life that I experienced that very nasty game of telephone that so many individuals that experience eating disorders have.

Very directly, that’s what they said, but my eating disorder, or that negative thought, that crappy committee behind my ears that already was so loud and judgmental, took it and said, “They talked so much about weight loss, it must be that but they’re just being nice.” If anybody who’s listening is part of the ballet world, they know people are not that nice in the ballet world, so clearly that should’ve been my red flag. But I was already there in my mindset.

And because eating disorders do run in my family – we know that they’re a biologically-based brain disorder – my mother had two sisters that experienced eating disorders, my father has a sister who has an eating disorder. So genetically, biology was there. And because I started on this restrictive diet, because my weight might’ve dropped a little bit under where my body set point was, it very much started. And then it was in that moment that I committed to do better. I again did not say, “I’m going to starve myself”; it was “I’m going to do better so next time there’s not a question, I will get the role.”

What actually reinforced my eating disorder, as I take a step forward into more of my story, is the following year when I was engaging in my eating disorder, I got every single role. So it very much solidified and gave that reward of ‘what you’re doing is okay; in fact, here, everything you’ve ever wanted is given to you now that you’re engaging in this eating disorder’.

Chris Sandel: Yeah, even if actually the reality was you’d just done ballet for an extra year, you would’ve got that role even if you hadn’t engaged in this.

Johanna Kandel: That’s exactly right, Chris.

Chris Sandel: That’s not the story that is being told in the head.

Johanna Kandel: Exactly right.

00:19:57

Why she quit ballet

Chris Sandel: Then in terms of ballet and how that continued on, you did reach a point where you quit ballet. Maybe talk about that.

Johanna Kandel: Yeah, further along. It was after my high school career. I was dancing professionally. I hadn’t planned on going to university at all because I was going to be a ballet dancer, and I don’t think I ever thought past the average career length of a ballet dancer. But I remember I moved out of my house and I moved to Orlando, which is about two and a half hours to the north of where I lived and currently live. I was by myself for the first time, and at that point in my life I was living life in a much higher weight body because that was when I was actually engaging in bulimic behaviours as well as binge eating.

I went to go see a physician, a real MD, who I was very direct about my eating disorder struggle and told her that I was too, in my mind, large to have a ballet career. So she put me on a very strict diet, which literally was kryptonite for me. It got me right back into restricting. So I moved out of the house and my mother came to see my first production up there, and she saw how thin I was and basically said that she and my paediatrician, who had known nothing about my eating disorder, but she consulted with him, believed that the ballet was causing my ‘disordered eating’, is what they called it at the time, and that clearly I would have to stop dancing.

So my eating disorder ended up costing me my greatest love of my life up to that point – my career, my passion, my life. At the time, I would turn around and say all the time, “If I can’t dance, I don’t want to live” because it was my life. I went to a special arts school. I danced five hours a day at night. I spent my summers in big companies. So I was completely lost at that time.

For so long, I had this dual identity. Even though my eating disorder was never my identity, and it’s not anyone’s identity, it sure has a way of making you feel like it is. So I had the eating disorder and then I had the ballet, and those were my two guiding – that’s how I would describe myself, if I really would even have the courage to say the eating disorder word out loud. But I definitely would say dance.

So when you take the ballet out of the picture, the only thing I had left that I felt was my eating disorder. That was really hard for me, and that’s when I started engaging in my binge eating when I would just numb and stuff and use food to maladaptively cope with the anxiety, the depression, the loss. It was at that time that I also knew that here I was, age 19, living in a city where I didn’t know anyone and had an apartment.

My parents were very direct, like, “You have to go to university.” So I went to the local university and had this heart-to-heart with the person in admissions and said, “The only thing I know about more than ballet is my eating disorder, and if I ever do get better, I’m going to do everything in my power to help others. I know I’m not the first person, and I know I’m not going to be the last, so I’m going to do everything I can.”

I started university, and I used university in the same way that I didn’t use food and used food. I used it to numb. I used it to maladaptively cope. I took an insane amount of classes. I got my degree that should’ve taken me four years in a little over two and a half. But I was dying inside. I had suicidal ideations. I was depressed. I was binging and binging and binging, and I had this moment where I knew that the eating disorder would kill me. I had lost people at that time already to their eating disorder. I knew this was going to be the end of me, and I had this moment of my desire to see what life was beyond my eating disorder was a little bit more than my fear of change, my fear of letting go of my eating disorder.

I know you’ve probably talked about this, and so many people that are listening can understand – my eating disorder held this really unbelievable role in my life. It was my best friend and confidante, but it was my worst enemy and the thing that was killing me at the same time. I was in that mindset of ‘the devil you know is better than the devil you don’t’, but I had that moment of ‘I’m sick and tired of being sick and tired’. So that’s when I made my first call for help.

00:24:58

Eating disorders aren’t just about food

Chris Sandel: With the uni piece and you saying you did four years in two and a half, I think this is just so true of how the eating disorder is not just about food. It morphs, it shifts, it changes into whatever it needs to. It was really interesting; I watched recently the Anthony Bourdain documentary. Have you seen that, Roadrunner?

Johanna Kandel: I haven’t, but I’ve heard a lot about it.

Chris Sandel: He’s someone who struggled with heroin for a really long time and then stopped heroin, but it just morphed into lots of other addictions.

Johanna Kandel: Of course.

Chris Sandel: Some of them appeared healthier than others, but yeah, he still never seemed to get over that.

Johanna Kandel: You make such a good point. This may not feel great for some people to hear, but along my last 22 years of running this organisation, I’ve met people that say, “I had an eating disorder and then I recovered on my own. One day I decided that I didn’t want to [insert whatever behaviour they did].” Then I turn around and the more that we talk, they start sharing, “I then went to treatment for alcohol abuse and addiction” or “I exercise X amount of hours every day” or “I eat a paleo diet” or “I do this or I do that.”

It’s this idea, like what you were talking about, this symptom substitution. It’s this game of whack-a-mole. Perhaps the eating disorder is not the primary anymore, but what else are you using to maladaptively cope with all the stuff that’s underneath? Because the eating disorder on some level is about the food, but it’s really not. It’s just the tip of the iceberg. It’s about the depression, the anxiety, the trauma, the comorbid stuff, our society that we live in that’s extremely fatphobic, very diet-centric, that dictates what ‘health’ looks like or should look like, social media, all of those factors.

Unfortunately, so many people do not get access to care, and even more people don’t get access to good care to really take a look and to be able to get the tools to be able to healthfully work through all the other pieces. So of course someone, if they weren’t given the opportunity to get the treatment that they need, of course they’re going to keep on reaching out to whatever’s going to continue to make them numb. For me, it was university; then it was drinking, and then it was shopping, and then it was whatever it was, because I just didn’t want to feel. I didn’t want to feel as terrible as I did about myself.

Chris Sandel: Totally. When I reflect on the way that I work with clients, in the beginning it is very much about what you would think it would be about when you think of eating disorder recovery. It’s like, how do we help in terms of nutritional rehabilitation? How do we help in terms of challenging food fears? All of the stuff that revolves around the food and the exercise that seems very much connected to the eating disorder.

But then it’s like, let’s look at how this then plays out in relationships or how this plays out in all of these other aspects of your life. How is the eating disorder still there? Because if you’re not dealing with that at some point, this is going to rear its head, either as the eating disorder again or in some other way. Especially because life is hard. There is going to be a death, there’s going to be a divorce, there’s going to be many opportunities for you to be in a situation when life is really knocking up against where you feel like “I just can’t deal with this.”

So having explored all of those things in advance and continuing to explore all those things I think is really important.

Johanna Kandel: You bring up so many really great points. I think one of the things that – I say to people I’m recovered, but yet I’m living in my life, and you do not recover to utopia; you recover to life, and life is full of good and bad. And I also know, too, that first of all I have accountability humans in my life. It’s humbling, almost, at this point. If they ever see something, they need to say something, like, “Hey, Johanna, you doing okay?” Of course, my first defence mechanism is always “I’m fine, I’m fine.” But to have the humility to say, “These are my most entrusted floaties in my life. If they’re saying something, something might be going on.”

But also, I can never be too far away from my recovery to know that sometimes I may need to go back to basics, especially when it comes to nourishing myself. I’m a human; if I lean into my biology or my hunger and satiety, when I’m super stressed, my hunger goes away. That is not an eating disorder thing; that’s a human being thing. And I also know that I don’t have the luxury to be flippant about that. Even if I may not be hungry and even if it doesn’t physically feel good, I still have to nourish myself.

I have to do that because there are certain things I know. I know I will never, ever be able to go on a diet ever again. I will never be able to go on a cleanse, on a fast. I’m of Jewish faith; I do not fast during the high holidays. It’s something that I have to do, because I know that the intentions behind it are never good if I do it. And I know that for me, one diet can lead to a slippery slope back to my eating disorder, and I will tell you, I have come too far to only come this far and to go back to where I was.

I’m sure many folks on this podcast have said it, many of your patients have said it – you’ve probably said it as well – my best day in my eating disorder pales in comparison to my worst day in my recovery. Life beyond my eating disorder is everything that my eating disorder was not. It means accountability. It means sometimes you’ve got to do the things that you just don’t want to do.

One of the things that early on my dietitian said to me is, “You don’t have to want to do something to do it.” That was a huge game-changer for me. Or you don’t have to like doing something to do it. I hated my recovery. It was the hardest thing I ever did. Literally. I tell people all the time, if someone’s telling you that the journey to recovery is great, they are lying to you. It sucks. It really sucks.

Chris Sandel: [laughs] During recovery.

Johanna Kandel: Yeah, but it’s also the best thing I ever did, bar none. And that’s why we’re not meant to do this alone. It’s not like ‘when you need it, reach out’. It’s ‘reach out’. You need support. You’re not supposed to recover on your own from an eating disorder, just like you’re not supposed to will a broken bone to heal. You go to the doctor, you get the treatments you need. Same thing. You get the support. Maybe people help carrying your bags, doing the different things. The same thing with mental health. Mental health is health, period. End of story.

Chris Sandel: I’m totally in agreement with you on that. Also, as you said, you have to know yourself. You have to really start to learn. I know if I’m stressed or anxious, I don’t feel particularly hungry, and I also know that if I don’t eat, then it has a much bigger impact on me. So even though I don’t necessarily feel hungry, I know that when I’ve eaten, I will feel better; if I don’t, I don’t sleep well. It has this knock-on effect even if I’m not getting the very obvious hunger cues. And as you said, for you, you know that the risk with that is far greater than the average person because you’ve been there.

It’s just remembering that even in those moments, when life feels really busy and chaotic and “I’ve got this next meeting and then I’ve got that thing tomorrow”, it doesn’t matter. I still need to stop and have something to eat here.

Johanna Kandel: Exactly right.

00:34:00

How she started the National Alliance for Eating Disorders

Chris Sandel: When you started studying psychology, you obviously talked about having that meeting; was the end goal always “I want to work with eating disorders”?

Johanna Kandel: I think I wanted so much to talk to that seventh-grade me who felt like she didn’t deserve to take up space, to be seen and heard. There wasn’t anybody talking about it. I felt so othered, I felt so alone. And I know that for me, so many things went wrong on my journey. In fact, I say this quite a bit: my experience ultimately became the blueprint of starting the Alliance and the work that I do today.

Obviously, it’s grown far beyond me, but to me, I wanted to know why no-one was talking about it. I wanted to know why I was doing this alone. I wanted to be in a room where people spoke my language. And I still see this to this day. You have families – God forbid they have children that have cancer or something going on. Here in the US, everyone brings them a casserole and they ask what they can do and all of the things. You have a child that has an eating disorder and no-one is there. No-one. The child with an eating disorder did not choose to have an eating disorder any more than the child that unfortunately has cancer.

So that was really my impetus. Why are we not talking about this? Why is more not being done? That was really my mission. I was getting ready to go to graduate school to get my PhD in clinical psychology. I had gotten into a programme. That was really when, for me, I was like, “This is really what I want to do. I want to create change on a grassroots level. I want to go into schools. I want to talk to people.” So I called my parents up and I said, “Mom, Dad, I want to go to school, but this is really where my heart is.”

I took out a loan and I moved back home to the South Florida area. I filed the papers to start the Alliance on October 15th, 2000, and I opened up the doors of the organisation on January 2nd, 2001. I always had this plan of going back to school if it didn’t work. I’ve gone back twice; I haven’t completed twice because my heart really has been in advocacy and the work that I do. It’s been a really interesting road. It’s been a very hard road.

I never was a business-minded human. I never was politically charged. I hated talking in front of people. I mean, you can put me on a stage to dance in front of 25,000 people, fine, not a problem. You ask me to talk? That’s terrible, terrible.

Along the way, I found my voice that I had lost for so long, and I found my passion, and 22 years later I’m so grateful and so humbled by the position that I’m in and the work that I do, being able to be part of the narrative, part of the story of someone else’s recovery, because it’s a rough road. I think people don’t really give credit to how hard this journey is. I want to hold space. We want to be a support network, and we also want people to know that it gets better, that there is truly life beyond eating disorders.

Chris Sandel: Going back to when you were first starting out with the Alliance, at that point how much did your parents know about eating disorders? Obviously, you’d been struggling for a while; you’d started to seek treatment. What had their role been? How much did they know this thing was such a big thing in your life, not just from something you were suffering with, but you’re like “I want to have this be my calling”?

Johanna Kandel: I don’t think honestly much. What’s really interesting is I remember in college, I wrote this essay about my eating disorder, and it was the first real time I put pen to paper. I remember I let my parents read it, and my mother cried. My father’s never touched me, so let me just say that, but he said, “I should’ve kicked your ass when this was going on so that you would’ve known better.” That was his mindset, like ‘let’s fix this’.

To this day, my mother doesn’t like to hear me speak because my mother on some level feels like she did something wrong because of my eating disorder. My parents did nothing, zero, to contribute to my eating disorder more than just how they gave me brown hair and brown eyes; they gave me the genetics. Definitely there was some temperament in the house – obviously, the situation I shared about my dad and I – but my parents did not cause my eating disorder.

So I very much know at this point my parents are extremely proud of me. Every once in a while, my mother will say something to me that my dad has said to her about my work. But it’s a different path that I chose than they wanted for me. There are some things that I do – I hold special positions within the US government under health and human services. I’ve spent time at the last three White Houses working on the Hill. I do a lot of really cool things that I don’t think they would’ve ever imagined their daughter to do. And then on the same level, I think it wasn’t the path that I think they would’ve chosen for me. And I still think that they are – I hope that they’re pretty proud.

Chris Sandel: I would imagine that there’s enough of the doing stuff in the White House to tick that box for your dad of where he wanted you to get, even if you’re not doing nuclear physics or whatever it was.

Johanna Kandel: Exactly, exactly. [laughs]

Chris Sandel: With the Alliance, obviously it has grown so much over these 21 years, but is it doing now what it was doing in the beginning, just on a much grander scale, and this was always the vision?

Johanna Kandel: Honestly, where the Alliance is today is not at all – I think it blows my wildest dreams, very truthfully. I don’t think I ever allowed myself to put out there or even – I would say manifest or just put out there what the organisation is today. It’s something I wanted, I’m sure, on some level. But for the first 10 years of the organisation, I was a party of one. I was by myself. I had some amazing volunteers, but it was me. I was also working three jobs outside of the Alliance to keep the organisation going.

Now, we are definitely doing a lot of what we did, but on a much higher scale, but we’re doing so much more than we had originally started out doing.

00:41:56

How Johanna manages her own mental health

Chris Sandel: How do you manage your own mental health with this? We talked obviously before about how easily an eating disorder can morph into other things, so how does it not do that given you talk about three jobs and all of those?

Johanna Kandel: I would tell you that, very transparently, at the beginning of the organisation, I feel like the way that I worked was probably also a way of numbing and continuing that. And for sure, I tell people all the time, I’m a recovering perfectionist and it’s something that I work on all the time. I don’t think I will ever move past that. But I’m trying to use some of the ‘evil for good’ as opposed to where I used to.

But for me, it means having my weekly therapy session, and very much knowing that I have the privilege of doing that. My story – and again, this is just my experience – is psychotropic medications was a necessity for me. I needed meds because for me, I had deficiencies in my brain, and that is exactly what the meds help with.

Also, having a support system. I can’t even tell you. For me, my eating disorder stole so much of my journey, so much of my life, but having really meaningful relationships that I don’t have to always be the ‘yes’ person anymore – because I was the ‘yes’ person for so long. Showing up, doing everything for everyone. Even if I was secretly resentful, just doing it because I was so afraid of letting other people down or being confrontational – and not in a negative way, but letting my voice, my opinion be heard.

Very truthfully, my partner, my husband, we’ve been together for 19 years, and he’s my human in this journey. He never ceases to lift me up and to support me and love me for me, as imperfect as I am, and letting me know that it’s okay to be okay, even though I’m not this unrealistic perfectionistic version of myself. Because even to this day, I have these moments of “Why isn’t the organisation in a bigger place?” or “Why aren’t we doing more?” or “How am I failing? Am I the right person to lead this organisation?”

But it’s the things that I don’t keep secret anymore. It’s the things that I bring out to the light, because when you bring things to the light, they make it a little bit more tolerable and you’re able to really work through them and push through them a lot easier.

Chris Sandel: Nice. I am totally in agreement with that in terms of speaking up about what’s going on, not with the thought that someone’s going to fix it for you, because that’s not actually what you need, but just “I want to tell you, this is what’s happening, this is how I’m feeling.” It stops resentments starting to occur. It stops you second-guessing. I agree with that bit of advice.

Johanna Kandel: Absolutely.

00:45:15

The role of genetics in eating disorders

Chris Sandel: I want to talk about some of the bits from your book in terms of different analogies and exercises and things that you cover, because I think there was so much great information in here, and I want to be able to share it with the listeners. One of the things you talked about – and you’ve already mentioned this a little bit in terms of your own experience, but just how much genetics are a part of eating disorders. I wonder if you could talk a little about that.

Johanna Kandel: Yeah, we know that if you have a parent or a sibling of a parent that’s had an eating disorder, you have a significantly more increased chance of having an eating disorder as well. They estimate that of all the causes of eating disorders, about 50% to 80% is genetic.

Dr. Cindy Bulik, who’s doing research in North Carolina and in Iceland – she holds two positions – is the foremost researcher on genetics. It’s truly remarkable because I will tell you, when the research originally came out, I was into my recovery. It’s culpability, because for so long, I had this shame. “I can’t believe I did this, I can’t believe I caused this.” Because I very clearly remember going on a diet, doing the things, and I was like, “I can’t believe that I caused this harm onto my family and myself.”

But having this knowledge that I did not choose this, this happened to me – just like a physical ailment – really changed the course a lot for me. When we start sharing that information with individuals and their loved ones, you see the same thing happen. It’s like, “Okay, this is not something that I caused. I don’t need to blame myself. And this is why I need access to care.”

Chris Sandel: Definitely. I think the genetics piece is a really important thing to remember, both for recovery and going forward, like we talked about before, in terms of someone’s tendencies. Like, “I need to keep an eye on this thing.” Because personally, I don’t think I could develop an eating disorder like anorexia because when I get hungry, it is so uncomfortable and unenjoyable, there is no part of me that thinks “I want to keep going with this experience.”

But for someone who has the capacity to develop an eating disorder, that is not their experience with it. Their experience is very different, and the early parts of that experience aren’t saying, “Hey, let’s stop, this isn’t great.” It’s like, “Wow, this is some calmness I haven’t noticed before.” There is some very good positive feedback to keep doing this thing that the vast majority of the population doesn’t get because they don’t have the genetics that make that so.

Johanna Kandel: Oh, 100%. Something that you bring up that’s so important is that restriction is the basis of all eating disorders, including binge eating disorder. I think a lot of people don’t realise that. They’re like, “Okay, people with binge eating disorder just binge eat.” But no, there’s always that marked restriction that leads to the binging.

And you’re going to get some type of something from doing that, or else you wouldn’t do it. That’s when the biology comes in, because like you said, a lot of people – like my husband, for example, he is hangry when he doesn’t eat. You need to feed him asap, and he’ll make no bones about it. And for me, if I actually leaned into what genetically – I would be like, “This is fine. This is just a feeling. It’ll pass.” That’s the difference. Or “I actually sort of like it” or it feels whatever you feel. So absolutely.

I also don’t want to put it out there like if you’re genetically predisposed to having an eating disorder, there’s really nothing you can do, you just have to go with it. That’s not at all what either of us are saying. For me, sharing about genetics is a way to make people feel less culpable, or more of the idea of you’re not bad for having an eating disorder. It’s quite the opposite. This is happening to you, and that is why you deserve access to really good care. Period.

Chris Sandel: I also think it’s useful to know because with eating disorders, a lot of people – and I’m included – use the language of ‘fully recovered’. But even though you’re fully recovered, that does not take away your genetic predisposition. You can be fully recovered, living a good life where your eating disorder is not having an impact, but if you get back into an energy-depleted state, there you are again.

Johanna Kandel: Exactly. That’s why I talked about not going on diets, and when I know that I’m being triggered in life, I have to go back to basics. As someone who’s lived on the side of recovery for 23 years, it’s humbling to be like, “Okay, let me go back to my old school, in my head meal plan.” Because I did have a meal plan. For me, I do believe in intuitive eating, but originally I had to go into some type of meal plan to start to lean into my hunger and satiety a little bit more. It’s like, have I nourished myself? For me – and again, everyone is different – it was three meals, three snacks. That’s what I had to do on my journey.

I really should caveat, that was when I was struggling with binge eating disorder. A lot of times people are like, “Oh my gosh, that’s only for restricting anorexia nervosa.” No. Again, my basis of my binge eating was I was restricting all day and then I was binging at night. So I had to normalise eating meals consistently.

But for me, it’s leaning back into that. “Okay, I know what I need to do. I have to do this right now,” Even if every cell in my body is like, “We really don’t want to do this”, it’s like, I need to do this because I am surely not going to go back to where I was.

00:51:38

Johanna’s drawer analogy

Chris Sandel: Definitely. One of the analogies you use in the book is the drawer analogy with the different drawers. Talk about this.

Johanna Kandel: That’s actually one of my most favourite analogies. I’m a very visual person, so when I finally connected with a therapist that really worked for me, when she started talking about theory, it didn’t really work. But when she was like, “Okay, imagine a box of crayons or imagine this”, it really connected. I’m very much visual in that vein.

This was actually post my recovery journey. I was getting ready to go into a meeting that I knew was going to be somewhat – I don’t want to say confrontational, but not where I could just placate everyone. So I literally went to the worst-case scenario and I was like, “I can’t do it. There’s no way I can do it.” It was very similar to a lot of people when they would take risks, whether it was with their dietitian or with their therapist.

So I had a dear friend of mine say to me, “I want you to imagine you’re standing in front of seven drawers, all seven drawers. I want you to tell me the best-case scenario of what can happen.” I shared with her the situation and she said, “That’s not good enough, because that is not what your best-case scenario would be in your black-and-white dichotomous brain.”

To give you an idea, you’re considering a job. You have to go in for a job interview. Best-case scenario. We’re probably like, “Okay, you get the job.” That’s not big enough. You go in to interview for the job with the CEO of this major company. The CEO looks at you and says, “Oh my goodness, you are the best human ever. You should be the CEO. I’m going to give you £3 million a year to do you, and that’s it.” So that’s top scenario.

Then she was like, “Tell me bottom drawer.” I was like, “You don’t get the job.” She’s like, “Think about your top drawer. Bottom drawer would be not only do you not get the job, but you don’t get the job, you lose your job that you’re working at, and they take your house and your dog.” Worst-case scenario, right? Worst thing you can imagine.

So she’s like, “Tell me middle drawer.” Middle drawer in the job situation is you get the job, but maybe you have a three-month probationary period, and you meet people and you like them, and there are some people that you might not get along with, but overall it’s a good experience.

To me, that seven set of drawers became a real great exercise for individuals that I was connecting with and working with, as far as when they were taking risks on their journey to recovery or trying something new. I like to say, tell me the absolute best-case scenario, which is top drawer, the absolute worst-case scenario, and then give me the middle drawer. Because the majority of life lives in that middle drawer. The majority of things happens in drawers 3, 4, and 5. And that made it a little less scary to do the hard things.

Chris Sandel: When I think about recovery, the goal isn’t that in life, you are then just going through where you’re in the top handful of drawers. It’s that you then learn the resilience and the ways to cope and the ways to be so that really, whatever drawers you’re coming up against, you’re still able to make it through. And yes, if you had your pick, you would pick that it’s going to happen this way and this way. But actually, you truly believe and you have lived experience by being able to come up against tough things that “Actually, I can get through this.”

Johanna Kandel: Exactly. And it’s knowing also, because I think for me, I feel like where I am right now, how I’m feeling right now is going to last forever – it’s realising that there’s always movement between the drawers. Always. You’re not going to be stuck in a drawer, ever. So just continue to give yourself that space and grace to give yourself the opportunity to be able to move through the drawers.

00:55:59

The importance of awareness + celebrating small wins

Chris Sandel: And even a lot of the work that I do with clients and talk about is connected to a thing called polyvagal theory and knowing where you are on your nervous system. So even when you think about that job situation or what that would be like, knowing that if I’m at the top of the ladder and in a good state, I will feel differently about how that exact same outcome feels versus when I’m at the bottom of the ladder and in shutdown. So realising, what state are you also in when you’re thinking about this?

Like I had an experience with a client last week, and we realised that when she was getting into a panic with things, whether it be her job or her body image or whatever, it was actually always when she was hungry. And when she ate and she was no longer in that state, she felt differently about it. It’s like, “Great, now you have this level of awareness of just how dependent and state-dependent your thoughts and feelings are.”

Johanna Kandel: That’s amazing. That’s really amazing. It’s that insight, so often – I co-facilitate several of our groups weekly, and one of the things that we share all the time is awareness is such a big part of life. It’s part of the recovery journey and it’s life. We were actually talking about this last Monday in group, like, “Yeah, but it’s just awareness. You’re not really changing.” And I’m like, but before you can change you need to have that awareness. It’s sort of like playing Monopoly and just sailing around the board consistently, not passing Go, not collecting $200, just going.

This awareness makes you stop. That pause is so, so important. So if anybody’s listening to this and finds themselves in that space of like “I have awareness but yet I’m still acting out on a behaviour”, I just want to say that’s phenomenal, because awareness is really that key step. That pause is that key step.

And I always believe, all the time, that the trips and the falls are meant to be there because you learn from that. Some of the things that I’ve learned and hold so dear to my heart are lessons I learned when I was so far down – so, so far down. But it’s giving me that opportunity to learn and collect those tools, to have this tangible toolbox to be able to successfully navigate.

Chris Sandel: And I think especially as things are starting to get better, when you have those relapses or regressions or step backs or however you want to phrase it, it’s at those points that you realise, “Oh, that thing really was making a difference.” You can kind of forget how much things have changed because it feels like it’s glacially slow, and then it’s when something snaps you out of that that you’re like, “Oh okay, I realise how important that thing I was doing is that I kind of was taking for granted.”

Johanna Kandel: Oh my gosh, you bring such a good point up, this idea of please don’t ever minimise your successes, your wins. For me, in that black or white, that chest of seven drawers, unless something was in the top drawer, it was like ‘it’s not good enough’. But that is actually the contrary. These huge leaps are made out of all these different baby steps. So I challenge you to take a step back and take a look at all the things that you’ve been able to do. Take off your perfectionistic coloured lenses.

We talk about this in group all the time. There was a time in my life where getting out of bed was insurmountable. Could not do it. So for me, this idea of getting out of bed – that was a recovery win. And of course, to my therapist, I was like, “Everyone gets out of bed, and I am not celebrating that. Is the bar so low that that’s what you’re telling me to be happy about?” She said, “But that was not your reality. That is not your story.”

So whoever’s listening to this, please give yourself grace and give yourself the opportunity to pat yourself on the back for all the small wins that you do, whether it’s listening to this podcast, reaching out to your team, if you have the privilege of having one, reaching out to a friend when things might not be great. Those are huge recovery wins.

Chris Sandel: Definitely. And it’s when you then stack those things on top of one another that it does move further forward, and you get that – I talk often with clients about the more you’re able to move forward, when things regress, you have a point of contrast where something is now different. Like if you haven’t got out of bed for 12 years and that has now become your reality, it’s hard to see something different. But when you then had three months of getting out of bed every day and doing a lot more and then you find yourself back in bed, it’s more jarring because you’ve had this different experience.

Johanna Kandel: Yep, exactly.

01:01:16

Johanna’s sinkies + floaties analogy

Chris Sandel: One of the other things you talk about in the book, and you mentioned it briefly in passing already, was sinkies and floaties. Explain what this is.

Johanna Kandel: When I was writing the book, I happened to be in Washington, D.C. I was at my husband’s cousin’s house, and I was watching – at the time, their daughter was so young, and she had those water wings on. She was throwing herself in the pool. Her parents had one eye on her, but they knew that these water wings were keeping her afloat.

I started thinking about how eating disorders give you that narrative. Like, eating disorders are maladaptive coping mechanisms. They have a function. They serve a function. Not even a question. They come along in your life at a time where you need to be kept afloat. So I want to definitely give space to that. Sort of like those water wings, they keep you above water.

But what the eating disorder actually does is at some point it does a bait and switch where it’s like ‘I’m going to keep you afloat’, but then what it does is turns into what I like to call a ‘sinkie’. It’s the thing that’s actually going to bring you down. It’s almost like originally they’re water wings, but ultimately they’re a weight that drops you down.

So what I encourage people to do – because we definitely need the things that are going to keep us afloat, so make a list of the things, the people that actually keep you afloat. Is it your friends? Is it your family? Is it your pets? Is it your university? Is it your work? What is it? Then one of the things I also ask people to do when they’re talking about sinkies and floaties is to also put together what I like to call a ‘smile list’. I’ve been writing these for years, and they change because nothing is written in indelible ink. You change, you live, things happen.

I remember when I wrote the book over a decade ago, the things that made me smile – I had a little dog at the time, Sammy. Every time I used to talk to him, he would turn his head like he was listening to me. Or little things would happen. Now my smile list is just thinking about looking into my daughter’s eyes, and her little giggle. My dog now, Teddy, who literally is Eeyore from Winnie the Pooh. He’s just a sad dog. He’s so hysterical and amazing, he’s wonderful.

But write down the things that when you read it, put a smile, because in those hard moments where you feel like you have nothing to smile about, we need those tangible reminders.

Chris Sandel: I think also, not just having that list, that list then might make you go over and look at your dog or go over and look at your daughter. It’s a reminder. Because again, I think when you’re feeling great, the awareness is there that those things help you, and when you’re not, the awareness disappears and it feels like, “That’s not going to really make a difference” or “It doesn’t matter.”

Connected in the same way, you talk about writing letters to yourself, again, to be able to read when you’re not feeling so good or it doesn’t feel like things are progressing the way you would like to, just as a reminder of ‘this is how far we’ve come, and things are really great’.

Johanna Kandel: Exactly. The other list that I would highly suggest doing is what I now call – do you know those things that are on the wall that have a little glass and it says ‘shatter in case of emergencies’ and pull the thing? It’s creating one of those lists – things that you can do when you are at a 4, 5, 6, upwards. You’re feeling very activated, you want to act out, you can’t think of tools on the spot. So having that list. And don’t just have one or two things; have a big list so that if 1 or 2 doesn’t work, you can go to 3 and 4.

This is the most important thing, though. Do not only use that in case of emergency. You need to know there’s reasons why at a location they’ll do fire drills to get you used to doing them. We have an amazing member of group that said, so brilliantly, about two months ago, “I come to group when I’m doing well so I know how to come to group when I’m not.” That is such a great reminder. So write down your list and don’t be shy to do your list of tools when things are going well so that you’ll know how to use them, you’ll know how to break that proverbial glass, when things are not going well.

Chris Sandel: Definitely. I’d also add, if you’re doing them when things are going well, you are building up your window of tolerance so that more often than not, you’re going to continue doing well, or it’s going to take more to knock you off your perch because you’re regularly having these things that are supporting yourself.

Johanna Kandel: Exactly right.

Chris Sandel: It’s like if the only time you try and do meditation is the point at which everything feels like it’s falling apart, you’re never going to succeed at meditation because you’re trying to do it at an almost impossible point, whereas if you’re practicing these things when it is easier, when it gets more difficult, as you say, you’ve got a better shot of it actually being able to help.

Johanna Kandel: Without a doubt. And then it becomes almost second nature, so it doesn’t feel so foreign and so uncomfortable to do it.

01:07:04

The ‘ignorant stamp’

Chris Sandel: Yes. There was a really great analogy as well with the ignorant stamp. I think this is something that I will use with clients a lot now that I’ve read it, so talk about this one.

Johanna Kandel: The ignorant stamp makes me smile whenever I talk about it. The ignorant stamp came out of a situation that happened in group. There was a group member who garnered the courage to share with her medical provider that she had an eating disorder, and his response was very fatphobic. It was just harmful and offensive. He made a comment that – you could imagine what he said.

So she was crying and she was like, “I’m so angry with myself.” I said, “This is not about something you did wrong. It’s about how the information was received. If you could go back to that moment, what would you like to do to that doctor?” She said, “I want to punch him.” I’m like, “I understand in my head, but violence, let’s not do that. Is there anything else that we could do to make his words not so penetrable and becoming that narrative that’s in your head now?” She said, “Absolutely not. There’s nothing.”

I said, “Imagine you were standing in front of him and he had a word written on his forehead. What would it be?” I’m not going to recite what she said; it was highly offensive. Very appropriate, but just not PG-13, as I like to say. So I’m like, “Okay, absolutely, yes. But what about it?” She said, “It was just so damn ignorant.” I’m like, “Okay.” The thing is, sometimes ignorance is not meanness; ignorance is just not knowing. And sometimes it’s meanness, so let me just say that. But a lot of times it’s just ignorance.

So I said, “Imagine that in big red ink on his forehead, the word ‘ignorant’ was written.” She started laughing and she goes, “It doesn’t feel as heavy.” So that’s how the ignorant stamp was born. Moving forward, imagine you have this rubber stamp that has the word ‘ignorant’ in red ink, and every time someone says something that’s triggering, something on social media, imagine you’re just stamping that person with an ‘ignorant’ stamp. So now whenever you see them, all you can see is the word ‘ignorant’ and it’s not so much.

Now, I always have a disclaimer: you can definitely go out and make an ignorant stamp, but please don’t actually stamp people. Just please don’t do that. But it’s just a really great analogy to use and a very great tool, and many of the people I’ve worked alongside have actually made rubber stamps that they can keep either in their purse, in their backpack, and then every time something feels a little triggering, they can touch it, because it’s a very grounding moment for them, and imagine stamping them with an ignorant stamp.

Chris Sandel: I love the physical part of that where you said, “We got these made up and I can actually touch it in that moment.”

Johanna Kandel: Exactly.

Chris Sandel: With this, it shifts it from ‘this is about me’ to ‘this is about the other person’, and so often in those moments, it doesn’t feel like it’s about the other person. The eating disorder thoughts come up and make this all the reasons why you should’ve done X, Y and Z or why you shouldn’t have done X, Y and Z and make it about you, when actually it’s really not about you.

It kind of reminded me of, within acceptance and commitment therapy, there’s this thing where if you’re having certain thoughts that are arising, repeating themselves, like, “There’s that thought again” and making it a category of thought. It could be “There’s that weight loss thought again.” Just making it that category of thought instantly says to you, “I don’t actually have to entertain this. I don’t have to justify it. I don’t have to do anything with it. I’ve categorised it as that thought and I can just move on.”

I think it’s the same here, like, “I’ve put it into the category of ‘this is an ignorant thought’. I don’t now have to spend the next 10 minutes, two hours, three days, whatever it is, in this battle with my eating disorder about this.”

Johanna Kandel: I love that, and I will tell you, ACT really changed my recovery and really my life, I would say. Originally I was brought up on a really CBT version of treatment, of you have a thought, you do the counterthought to that. It became so big in my head. I say this; the best way I can explain it, because I am so visual, is like you have a blemish on your skin and you know you shouldn’t touch it, but you can’t help yourself, so you continue to mess with it, and soon it’s so much bigger than it was originally because you couldn’t stop touching it.

For me, ACT was realising that that negative thought might never go away, and that gave me freedom. Like, okay, there’s nothing wrong with me that I still have this thought. It’s this idea of exactly what you said: acknowledging your thought, saying “Okay, I hear you, I see you, and I’m choosing to do something else” – this idea of “I can choose to do something else.” I think for so many people with eating disorders, the fact that eating disorders are not obviously disorders of choice, this idea of choosing “I hear you and I can do something else.”

Very honestly, I still have a lot of – I call it the ‘shitty committee between my ears’. I will have it. That’s who I am, that’s how I’m wired, and I can choose to do something different. I don’t have to sit there and counteract every negative thought I have with the opposite. I can say, “I hear you, that’s fine, and I’m doing something else.”

Chris Sandel: Yeah. Acceptance and commitment therapy is a big part of the way I work with clients. And even for myself, I don’t have an eating disorder, but I still have a brain that throws up lots of thoughts.

Johanna Kandel: For sure.

Chris Sandel: I think the mindfulness aspect of this, of just realising, I’m not the author of my thoughts; I’m just a witness to this thought that has come into my consciousness, and being aware of that – like, if this thought has just been auto-generated, I don’t have to say that I believe it. It doesn’t mean that this is part of my identity. It doesn’t mean this is part of my values, any of those things. It’s just there is this automaticity of this thing coming up in me, and being able to notice that and realise that then allows you to check in, like, “Is this a helpful thought? No, it’s not. Okay, cool, I’m going to put it to the side” or “Yes, it is. Great, let’s explore this further.”

Johanna Kandel: I love that. Absolutely.

01:13:57

Writing an ad for your healthy voice

Chris Sandel: The final thing that I want to get you to talk about is just writing an ad for the healthy vice. I really love this one.

Johanna Kandel: That one came out of – and there’s even more of a backstory than what I shared in the book. I think so much of what recover looked like was so foreign to me. It’s this idea of we talk about recovery-wise, “Why do you recover?” To be honest, I didn’t know why I was recovering. It wasn’t like, “I’m recovering because I want to have this career or I want to have children” or any of that. It wasn’t that. So to me, one of the things that started this whole advertisement for healthy voice was realising, what do I know? Which is my eating disorder. And what do I hate about my eating disorder? And then go to the opposite of that.

We talk so much about the ED voice, that negative eating disorder thought. People call it all different things. One of the things that I realised is that sometimes it’s hard to fight that unhealthy voice, so one of the things that was a very helpful tool to me was, imagine if you had a healthy voice, a healthy entity, if you will. In that same vein of recovery-wise, not knowing why I was recovering, I didn’t know what a healthy voice would look like, truthfully. I knew what a negative voice would look like.

So I started with this idea of, okay, if I were to write an advertisement for a healthy voice, what would that look like? I had to start with if I was writing an ad for what an unhealthy voice looked like – being loud and pushy and rude and violent and abusive, all of that – and then flip that. So allow yourself an opportunity to write a voice that was supportive, patient – the ad has changed for me so many times over the years. Inclusive. Not perfect. A cheerleader, in a sense.

And literally I did this activity where I actually put together an ad. It was a way for me to put it out there of what I wanted, and for some people, once they have this ad, then they’re able to name this entity, this positive voice. Some of the people that I’ve worked with over the years will name it ‘The Incredible Hulk’ or different names.

For me, my healthy voice, I named it Rosalie after my grandmother because she was the epitome of strength. What was so special to me is when I had my daughter, her middle name is actually Rosalie now, because I want for her all those things that I wrote in my ad so many years ago. She deserves that, and I want that for her.

Chris Sandel: Nice. I think sometimes it is easier to say, “How would you speak to a small child?”, so imagining that.

Johanna Kandel: Exactly.

Chris Sandel: But the way that you go through this exercise and then have all of these characteristics that you would want, and then when a different voice turns up, you can be the HR team, like, “Is this the kind of person that I want for this job?” And it’s not that you then overnight start speaking to yourself differently, but you can notice when the qualities that you want are there and when the qualities you don’t want are there.

Johanna Kandel: Exactly. I love that. Again, bringing it full circle to our conversation today is this idea that it’s not going to happen overnight. It’s not going to be black and white. You’re not going to go from hearing this voice that’s living rent-free in your brain to all of a sudden having this overtly supportive and wonderful voice. It’s not going to happen. And probably some aspects of that negative voice are always going to be there. But you also can bring in the reinforcements by having that healthy voice, internally and externally as well.

Chris Sandel: Definitely. Johanna, this has been such a wonderful conversation. I feel like we’ve barely touched the topics in your book, and I highly recommend that people go and check it out. There’s lots of analogies and exercises, and there’s definitely stuff that I will be using with clients because of reading this.

Johanna Kandel: Wonderful.

Chris Sandel: Where should people go if they want to find out more information about you?

Johanna Kandel: Absolutely. I would suggest people can log on either to our website, which is www.allianceforeatingdisorders.com – they can visit us on all social platforms under @AllianceforED. One of the things we want to offer for everyone is we have free weekly therapist-led support groups for individuals experiencing eating disorders as well as their loved ones. We have people from all 50 states in the United States that attend and 71 countries around the world. We have so many folks from the UK that have joined. So it’s there, it’s a free service. The groups are wonderful.

So you can find the Alliance on those platforms. And feel free to reach out. We have an amazing, amazing team of humans doing the most incredible work. I really am privileged to work with the best of the best.

Chris Sandel: Nice. I will put all of those resources in the show notes. Thanks again for coming on. This has been wonderful.

Johanna Kandel: Thank you so much, and I hope you have a wonderful rest of your day.

Chris Sandel: Thank you.

So that was my conversation with Johanna. She really is doing such amazing work, and there are so many resources over at the Alliance site, so if you enjoyed today’s show, then check out the site and also check out Johanna’s book, Life Beyond Your Eating Disorder.

01:20:09

My recommendation for this week

I have a recommendation for something to check out. It is a documentary called Val, which is all about the actor Val Kilmer. Val Kilmer now is in his early sixties, and in more recent years he has struggled with throat cancer and had a procedure that means he now has to speak with a voice box. But all throughout his career, he had a video camera with him – in his everyday life, on the set of all his movies. He seemed to just document everything.

So this documentary is a look back at his life, with his son doing the narrating for it. It’s a lot of archival footage pieced together with now how he’s living his life and what’s going on. I found him to be a real fascinating human to feel the need to constantly film everything, whether it was of himself or others, and just to see how his life has played out. I didn’t know a huge amount about Val Kilmer before the film; I knew of him from films like Top Gun and The Saint, and I knew that he played Jim Morrison in a film about The Doors, but I hadn’t seen it. But even though I knew little about him, I still found it a great documentary. I don’t think you need to know much about him. It gets covered.

It’s just really well put together. It has an incredible soundtrack, and that would be a second recommendation connected to this, which is to actually check out the soundtrack. It’s got a lot of listens from me since I saw the film. There’s obviously a lot of The Doors on it, but also Brian Eno, Gary Newman, Bob Dylan, John Lennon, Nick Drake, The Velvet Underground, Aphex Twin, and a really beautiful piano version of Pixies’ “Where Is My Mind?”

So if you want something to listen to or something to watch, then I recommend Val.

And that is it for this week’s show. I will be back next week with another show. Until then, take care, and I’ll catch you soon.