Podcast Transcript

Episode 77: Eating Disorder Recovery is Possible: Johanna Kandel on Hope, Healing & Advocacy

[Bouncy theme music plays.]

Sam: Hey, I’m Sam.

Ashley: Hi, I’m Ashley, and you’re listening to All Bodies. All Foods. presented by The Renfrew Center for Eating Disorders. We want to create a space for all bodies to come together authentically and purposefully to discuss various areas that impact us on a cultural and relational level.

Sam: We believe that all bodies and all foods are welcome. We would love for you to join us on this journey. Let’s learn together.

Sam: If you’ve ever felt like recovery is out of reach, like you’re too far gone, too broken, or too tired to keep going, we want you to know you’re not alone.  Whether you’re walking through recovery yourself, supporting someone you love, or working as a provider in this field, this episode is here to remind you that healing is possible, and it doesn’t happen alone. Today, we’re honored to be joined by Johanna Kandel. She’s a nationally recognized leader, advocate, and expert in the field of eating disorders.  As the founder and CEO of the National Alliance for Eating Disorders, she has dedicated more than two decades to advancing access to care, support, and education for individuals affected by eating disorders and their loved ones.  After personally struggling and recovering from a decade-long battle with various eating disorders, Johanna turned her lived experience into purpose founding the Alliance in 2000.  Under her leadership, this organization has grown into the leading national nonprofit, providing referrals, support groups, and advocacy across all 50 states.  Johanna is a trusted voice in national mental health policy and legislative advocacy.  She’s worked closely with lawmakers on Capitol Hill, participated in the first ever Eating Disorders Roundtable at the White House, and served as a member of the Federal Interdepartmental Serious Mental Illness Coordinating Committee under HHS. She’s also the treasurer of the Board of Directors for the Eating Disorders Coalition and a proud member of the Collective of Eating Disorders Organizations. She’s the author of Life Beyond Your Eating Disorder and a frequent media contributor featured in outlets such as The Today Show, NBC News, The New York Times, Wall Street Journal, Cosmopolitan, and Glamour. Johanna has received numerous accolades for her service and advocacy, including the Jefferson Award for Public Service, the Academy for Eating Disorders’ Me and Hartley Leadership Award, the Harlequin Enterprises’ More Than Words Award. She’s a fierce champion for change and continues to drive national conversations on eating disorders with compassion, innovation, and an unwavering commitment to saving lives.  In this episode, we talk about what it means to truly heal, and how even the most painful parts of our story can become the foundation for purpose in our future.  We’re so honored you pressed play today.  If something in this episode gives you a little bit of hope or inspires you, sharing it with a friend or hitting subscribe helps us reach others who might need to hear it too. Thanks for being here.

Welcome back, everyone. You’re listening to All Bodies, All Foods. I’m Sam. I’m here with Ashley. And boy, do we have a show for you today. We have Johanna Kandel with us, and we’re so grateful. Welcome to the show.

Johanna: Oh my goodness. Thank you so much for having me. I’m so thrilled to be here with all of you today.

Sam: Johanna, before we get into your powerful story, what an incredible story that I have, I think the first time I heard your story was 12 years ago. It has stuck with me. You’ve made such an impression on me and all the incredible work you do today, which we’re going to get into. I was hoping we could start the show where we could get to know you even more. If you could take us back to who you were before your eating disorder began. You shared that your eating disorder started with a diet at 11. So young and I was curious, who were you before the eating disorder, and what do you think that younger version of you was really needing deep down?

Johanna: Wow, okay. You know, it’s so interesting because I don’t think I really knew  me before my eating disorder very truthfully.  To talk about going back to, when I was 11, I think we actually have to go back even further, very honestly, because I think that so much of our history dictates who we are as humans, right? So my father was a Holocaust survivor. My mother came from extreme poverty from North Africa.  They both, my mother emigrated to Paris and then they got married and then they emigrated from Paris to the US.  And my father having lived through such a traumatic time, developed a lot of unhealthy coping mechanisms, a lot of traits, struggled with extreme, such as compulsive disorder, perfectionism, and  I really had that proverbial first generation, you have to succeed, you have to make us proud. We came to this country to have a better life. And so for as long as I can remember, and I think also genetically, I struggled with anxiety. I struggled with perfectionism also. It really sort of came out as being that very shy kid, never feeling good about myself. I was always high behind my parents’ legs. And I grew up in a house where I knew that I had to be a success. I had to be a lawyer or a doctor or something along those lines and, you know, the American dream, if you will. And it just so happened that when I started walking, I walked with my feet turned in, so I was very pigeon-toed. So my parents thought it would be really good to put me in ballets to be able to turn out my feet. And so at the age of three, I went to a local ballet studio that was attached to a professional company. And I remember in that moment, it’s probably one of my earliest memories, seeing a professional ballet dancer wearing a tutu and pointe shoes.  And I knew in that moment, I wanted to be just like her, and that’s where my love for ballet started. And so if you think about this time of never feeling good enough, living in a very black or white, you know, very binary brain, always having to be the best,  dancing, succeeding at all costs, as you can imagine, that was  really  part of that perfect storm that ultimately  at the age of 11 and a half became  what was  the development  of an eating disorder. And so to get back to your question, I think I wanted acceptance. I think I wanted to feel good. I wanted to feel good enough. I wanted to feel okay in my body.  And I think all of that really were so many of the parts of the development of the eating disorder. 

Sam: So many risk factors that I think so many people can relate to. Intergenerational trauma, the pressure to succeed, the perfectionism, ballet. You know, this is an activity that’s, you know, that has a lean aesthetic. I mean, just like you said, it’s like this perfect storm and wanting acceptance is usually at the root of so many eating disorders.

Johanna: Yeah, feeling really like feeling good enough, feeling deserving. And it was really interesting because further on in my story on my journey to recovery, I was working with this amazing clinician because for a lot of my story, as we’ll talk about, I didn’t have access to care, which is probably one of the biggest reasons why I started the Alliance.  But I’d finally connected with a clinician who agreed to see me in a sliding scale and she was revolutionary for me and really, really helped.  And one of the exercises we did was, you know, these affirmations and I remember telling her like, I’m not going to be the person that’s going to write like I love myself. I’m beautiful because I think they’re full of caca like let’s move on. And so, we worked a lot on finding an affirmation that connected and ultimately what mine ended up being was the two words, “I deserve.” And I remember saying it very almost robotically, not connecting to it. And after doing it for a while, this one time I heard my voice, my words, and I started to cry. And I think I must’ve been around 20 or 21 at the time. And that really was such an important moment for me on my journey to recovery was because I didn’t feel like I deserved.  I didn’t feel like I was good enough. I didn’t feel like I deserved to take up space or to be seen.  And I thought that if I just kept on trying, if I just kept on working enough that maybe, maybe, maybe I would get there. But unfortunately, what I wasn’t realizing was that bar was so unattainable, there is no way that I would ever get there, which would lead me to this constant trying and failing and then perpetuating that, you know, the crappy committee between my ears, giving myself fuel to keep on going  with  whatever I was doing to myself at the time.

Ashley: That sounds so hard, Johanna.  You’ve shared in some of the talks that you’ve done that  you’ve walked through trying to get to recovery for a while and you even had a period where you were close to death.

Johanna: Yeah. Unfortunately, my eating disorder started at 11 and a half.  And, you know, I say this a lot, and so for those of you that have heard me speak. There was never this moment that I woke up one morning, looked outside the window on West Palm Beach, Florida and said, what’s a beautiful day; I think I’m going to have anorexia nervosa today. That was never it. And that’s not it for all of us with eating disorders, right? I often equate it to this, you know, that quote that the path to hell is filled with good intentions.  I did what everyone else in my ballet class did. We all went on a diet to get ready for an audition, but because of my genetics, because of my temperament, because of the environment, everything came together and my simple diet  turned into a nearly 10 year battle with  various eating disorders. I struggled with anorexia nervosa, with bulimia nervosa, with binge eating disorder, with atypical anorexia nervosa. I would even say orthorexia at some point as well, and you know, the whole time is I was going through these cycles of restricting and then binging and then restricting. And even when I was binging and I, and I talk about this a lot with binge eating disorders, like so often the root of binge eating disorder is restriction, as well. Like it was I was trying to be better. I was trying to do better and I would set myself up.  But for so long of my struggle until I was around 17 and a half, I sort of touted that line of  not in my head being sick enough, quote unquote,  and you know, not being that lifetime after school specials. So no one thought, oh, eating disorder, you know, and it wasn’t really until one,  one night my mom happened to walk in on me in the bathroom when I was changing and I was  at that point extremely underweight.  She just looked at me and started crying, and I was so afraid in that moment. I have to tell you that I was crying out for help and I wanted to get better because I knew that I couldn’t continue.  Yet at the same time, I was  so terrified that this would be taken away from me because it had become the way that I coped. It became the way that I lived. And the next day, my mom took me to my pediatrician. And as many of us have experienced in this world, you know, the doctor was very evasive. It was like, you know, she’s a little bit underweight, but go home, feed her some good French food, she’ll be fine. And, you know, ultimately I ended up in the hospital and, you know, it was really interesting because at that time I really looked like the textbook version. And no one, no one said the word eating disorder to me. They were more concerned about physiological side effects of the eating disorder as opposed to, oh, maybe this is what she’s struggling with.  And there is that part of me that was like, okay, great, I can continue to do what I’m doing. It’s not that bad, you know, and my eating disorder continued. And that’s where my eating disorder really switched from, you know, more of like a, you know, restricting anorexia nervosa, it’s a bulimia and binge eating disorder.  And it was really interesting because I then lived life in a larger body.  And when I lived life in a larger body, I was then prescribed the behaviors that I was struggling with when I was struggling with anorexia nervosa or low weight anorexia nervosa, I should say.

Sam: You were told to diet, essentially.

Johanna: I was told to diet. You know, I was legitimately more sick in that body than I had been previously. And that’s what makes me really, really want to advocate to shatter that stereotype that eating disorders have a look because you can look absolutely fine and be dying from an eating disorder. So, you know, I had this moment, I ultimately had my ballet career taken away from me because my mom, she came and she saw one of my performances and she said, it’s clearly the ballet that’s  causing you to struggle with whatever you’re struggling with. I didn’t have a name for it. I didn’t have a diagnosis for it.  There was part of me that thought if I didn’t have to wear pink tights and a black leotard all the time, this will go away.  What ended up happening is for so long, I felt like I had these dueling identities of Johanna the ballet dancer, and even though my eating disorder was never my identity, it felt like it was my identity. And when the dancing went away, the only thing I was left with, I felt was the eating disorder. And so that’s where it really, it’s just became worse, really.  And it also led me to what I’m ultimately doing today. Cause I had this feeling of, you know, the only thing that I know about as much as I know about my dance is my eating disorder. And if one day I would ever get better, I really want to do something. Now, I was definitely not in a position or a place to do anything because I was so ill at the time,  but that was really the catalyst for me to start going to school, to get my degree, and then ultimately um led me to making up probably one of the hardest phone calls I ever made in my life.

Ashley: What was that phone call?

Johanna: It was a call to my parents.  And, you know, I literally said to them, you know, mom, dad, I’m sick and tired of being sick and tired. And that is, that was really it. It was after, unfortunately, a suicide attempt that I had.  And I had this moment  where the fear of change was just a little bit less than my desire to just open up that door and just take a peek out. And I think somewhere inside of me, I knew that if I didn’t  get the help, if I didn’t change that I wouldn’t make it. I had lost people in my circles to this insidious disease. And I had this moment of, I think I want to get better. I’m not fully  committed or invested, but, and I really, have to tell you both that because I’m so all or nothing in my head, I thought, make the decisions, get better, you know, very much in the path of my eating disorder. That’s how my eating disorder recovery was going to be. And as we all know, that is absolutely not how it works. It was, you know, one step forward, 26 steps back, two steps forward, one step back. And what was devastating is I thought that when I asked for help, I would be able to get the help. And it turns out that I couldn’t get the help.

Ashley: Is that because of the inaccessibility to care Johanna?

Johanna: It was a combination of, you know, at that time we weren’t talking about binge eating as much as we are now. I didn’t quote unquote present like I had an eating disorder. Insurance didn’t cover it and my family couldn’t afford treatment. And so I tried. I really tried. And I ended up, I was able to connect with one therapist who didn’t really work with eating disorder. She worked with substance use. And I went in and I was like, okay, I’m going to tell you  what I’ve been doing, what’s been going on. And she listened and she was really nice.  But she said to me, you know, I’m really happy that you’re here and very proud of you for sharing what you just did, and I need to tell you that you’re going to be struggling with this for the rest of your life.  And, you know, after a very long time of thinking about it, I think what she meant, she was very much in that 12 step recovery mindset of, once you’re an alcoholic, you’re always an alcoholic. And I do believe that that’s what she meant. But in that moment, what I needed more than anything was for someone to say, it gets better. Because I left that meeting and I was like, if I’m not going to get better, why am going to try? And it took me some time, right, to like, look, and I ultimately ended up in 12-step rooms, I actually ended up in alcoholic anonymous groups where alcohol was not my drug of choice. It wasn’t, but I was craving community. I was craving connection. I wanted to be in a space where folks sort of spoke my language, if that makes any sense. And that was really the beginning. And through that, I met this clinician who worked with eating disorders and agreed to see me for a sliding scale. And that is really where my healing began.  And it was really interesting, the journey to recovery, because it was really realizing that it’s not going to be a linear path, and it’s going to be messy. And I don’t do messy. I don’t like messy. I like things in nice little neat boxes. An  it was really hard to not lean into that voice that told me that when I had a trip and a fall, to not continue to trip. And that was really the biggest lesson is you will have a trip in a fall. You’ll have detours, but it’s not about that. It’s about what happens after what that moment next is going to be. It’s about the picking yourself up, the dusting yourself off and continuing to move forward. And that was humbling and it was overwhelming.  And, you know, I was lucky enough and I have the privilege to say that, you know, I now am living beyond my eating disorder. I personally prescribed to the word recovered. That is just my word. I don’t put it on anybody else.  But more than anything, to people that are listening, what I really want you to know is that it gets better.  Whether it’s in recovery, in recovery, healing, in remission, whatever word, it gets better.  And recovery is the hardest thing that I ever did to this day. And, you I often say, you know, you don’t recover to utopia. It’s not sunshine, bunnies and rainbows. It is  hard and overwhelming. And it’s so great because I get to show up and I didn’t show up for so long. I get to be here now and  being here now is all the feels  and very overwhelming, but it’s so worth it.

Sam: Thank you for sharing that. This question comes up all the time, whether or not are you recovered? Are you in recovery? And you’re an example of someone who says, I am recovered from my eating disorder.  And there might be some listeners thinking, what exactly does that mean?  Do you still hear your eating disorder voice? Do you ever have urges? What does recovered mean to you?

Johanna: So I always go back to the fact that there is no definition for recovery, right? I think, which was actually really made me a little angry because I was like, you want me to get somewhere, but you can’t tell me where I’m going. Like, so that’s great.  But to me, recovery means that I am human. Recovery means that that voice every once in a while will come in and to me, recovery means that I can hear that voice and say, I hear you and I’m going to choose to do something different.  I think,  you know, I’ve had, I mean, I can say this with so much privilege and so much gratitude. I’ve had such a long time now that it’s, it almost feels like my DNA has changed. Like it’s almost like that neuroplasticity has happened where inherently I need to know that like when I get stressed, I may not, because I’m a human and not a robot, like humans that have never had eating disorders, like when there’s stress,  either will not want to eat or will go to eat, they’ll go one or the other. And for me, sometimes it’s like, I don’t feel hungry, I don’t feel comfortable. It’s actually pushing through that and saying, I don’t have the liberty to not do that.  I also don’t have the liberty to partake in diet culture because for me, know that like not even a baby toe, it’s like game on,  which can make it really hard in the world that we’re living in right now. And I still, and I share this a lot, I still struggle with anxiety. you know, it’s something that I’m actively working on,  but no, my eating disorder does not dictate  things at the negotiating table. It doesn’t dictate things at the dinner table, you know, and I’m not perfect. And I really more than anything want people to know to give themselves grace is that we’re human beings being human in a world  that’s very,  you know, weight stigmatizing, fat  phobic. And I also can tell you that I also have a privilege of living in the body that I do.  And that’s never very far, far for me.

Sam: You know, there are people who might be listening right now who are in the beginning of treatment, beginning of recovery. And I think one of the fears that comes up quite a bit is this fear that it’s always going to feel this hard. You know, that my eating disorder voice is going to be screaming at me. I’m going to be always having these intense urges and how am I going to do this forever? And your story is really, I think, so many people hope that it doesn’t, it’s not going to feel that way.

Johanna: It’s really not. It’s really, really not. And, you know, that’s also not to say that you’re not going to have days that are going to like knock the wind out of you.  And that’s okay, because I will tell you one of the things that I learned through my recovery, but I’ve actually, or my journey to even just sort of recovery, but even more so since my recovery is we’re not meant to do this alone. We’re not supposed to do this alone because I never wanted to be a burden. I never wanted to reach out, and you need a community.  I believe fully that healing happens in communities, which is why I’m so adamant about the services that we provide at the Alliance, specifically our support groups, because to me, that’s where my healing happened, was in groups.  It’s remarkable when you can be in a space where someone says something and it’s very similar to how you’re feeling, but you’ve never been able to vocalize it or actualize it. And in that moment, like cracks happen and light starts to come in and you’re like, I am not alone because my eating disorder loves to thrive in isolation. It loves to thrive in secrecy. And yet when I allow myself to lean into the humans that are around me that are there extending their hands, it’s so much easier to take that step. 

Sam: Oh yeah. And I’m a big believer that vulnerability is contagious. Courage is contagious.  it’s, you know, when you see other people engaging in the work, it fuels you.

Johanna:  Absolutely.

Ashley:  I was curious, Johanna, if that was maybe something that you found, like, like being in community or seeing other people thriving in the world, kind of without the existence of an eating disorder, like, was that some of what moved you forward when you were in some of your deepest, darkest spots? Or what did, what helped you in those places?

Johanna: Yeah. So I think that’s selfishly why I ended up doing the work that I did, because I tend to forget how old I am now. But when I was struggling with my eating disorder, there was no conversations about eating disorders. Very rare, very few. I think like Renfrew was  one of the only treatment centers at the time. And the only people that I knew that had struggled with eating disorders, and this is going to age me, so forgive me, was Karen Carpenter, who unfortunately lost her life to an eating disorder, and Tracy Gould, who was on a show called Growing Pains.  And when she had struggled on the show and then left last season because of her eating disorder, and no one really knew what happened to her. She went off to do,  she ultimately did a movie on Lifetime, which I’m not going to say the name because please don’t watch it. was such like, it was kryptonite to my eating disorder, but those were the only two people that I knew that had struggled with eating disorders. And so  I was wishing I had almost that proverbial, like canary in the coal mine to tell me that there was a thing called recovery because with the lack of recovery stories and the fact that, you know, I had this clinician say to me, you’re going to be struggling with this forever. I didn’t know what I was going through. And then like, what, now you’re telling me that there’s no definition of recovery. Like I don’t understand. And so that was really the big impetus to start the Alliance and to share my story in a very honest way, because I think so often the way that eating disorders were portrayed for a very long time was, you know, all these books about eating disorders, like three quarters of this narrative was this tumultuous relationship with food and your body and your brain. And then something happens, they end up in treatment or the hospital and then they live happily ever after. And I was like that’s not my story.  That’s not at all my story. And so I really worked hard to sort of push that discomfort of sharing my most vulnerable facts about myself in hopes of helping other people know that it does get better. I am, you know, I think the first person I ever heard talk about it was Carolyn Costin when she was really talking about recovery, then, you know, Wendy Oliver-Piatt talked about her recovery. Dr. Jillian Lampert talked about her recovery and these were the people in my orbit when I was coming up. That’s why I’m so happy that about three quarters of the clinicians that run our support groups are actually humans of lived experience themselves and they share.  And let me also say that you do not have to have lived experience to be an unbelievably amazing clinician.  And it’s really cool when someone can say, you know, I’ve walked this journey and  keep on going because it might be so hard, but it’s so worth it.

Sam: Oh, absolutely.

Ashley: There is something with that when you connect with somebody who’s experienced something similar before and they’re on the other side of it or they’re closer to the other side than you are, right? Like that can be so encouraging for someone.

Johanna: It’s hope.  I remember my best friend when we were 33, she got diagnosed with pretty significant breast cancer. And I remember in that moment hearing her diagnosis and right away I had this immediate sense of hope because of so many survivor stories, because like October, everywhere you turn, there’s a pink ribbon and you know that people live beyond this diagnosis. And I always had this, and I’m not a jealous person by any means, but I’ve always had this tinge of jealousy. We need more of that for eating disorders so that when you get diagnosed or you have your kiddo that has an eating disorder or a sibling or a parent or a spouse, that you’re not overcome with, oh my gosh, are they going to struggle with this for the rest of their life? Or God forbid, are they going to lose our life to this? We need more stories. And it’s so empowering and so hopeful to me as I’m seeing so many more people share. It’s just to me, Ashley, to your point, it gives you hope.

Ashley: Yeah. Well, and eating disorders thrive in shame and secrecy.  I mean, and they have for years. And so if we can come to the other side of that. I’m thinking about that too, like how October is completely pink, right? There is, you know, and there’s runs and all sorts of stuff and like fun shirts and things. Why does somebody getting diagnosed with an eating disorder, why does there have to be stigma or shame attached to that? Why can’t we approach it and treat it in a similar way? Let’s rally around this person and support them.

Johanna: Well, and I think that that is so much of the work that I think I’ve spent the last 25 years doing is really, you know, changing the narrative that eating disorders are disorders of choice or vanity. These are biologically based brain illnesses. These are serious mental illness and need to be treated as such. Like you would never in a million years tell someone that broke their arm, well, will it to get better? And if you had enough willpower, you could, but that’s absolutely not. And why are we doing this to people with mental health disorders, specifically eating disorders? Like, how is that okay? Like, they need to be treated on par. Physical health, mental health, they’re all hell. Full stop.

Sam: I’m wondering, Johanna, was there ever a time where you felt any fear or shame about sharing your story? Because I know this comes up for people, and those feelings can get in the way of talking about what’s going on.

Johanna: You know, I think for me, which was really interesting is I never wanted to talk about it during my struggle and during my recovery.  When I was in more of a recovery state, I really wanted to talk to that 11 year old me who was so afraid of taking up space or to be seen. So I think that was really, that sort of superseded any shame that I had around talking about it. So it was very much of, I want people to talk about this and something which always humbles me every single time is whenever people find out what I do. I mean, there’s some that are ignorant and we’re not even going to allow them to take space and are this conversation, but it’s, oh, I struggled with an eating disorder or my roommate or my this, everyone knows someone who has struggled and people want to talk about it, but they don’t know how to talk about it. I think we’ve come very far from where we were. We still have very far to go, but you know, our biggest North star at the Alliance is ensuring that eating disorders are part of the general mental health conversation, because if we’re not, at least including it in the mental health conversation, we’re never going to include it in the mainstream conversations that we have.

Sam: Well, you do so much good work spreading awareness and giving hope to people. We’re just so grateful to have you in this community. I hope you know what a powerful voice you are, and you’ve given a voice to your little 11-year-old self who was scared to  speak out and take up space. And that’s such a powerful visual of you giving that little girl voice.

Johanna: That’s extremely generous. Thank you so much. I try. I started this work for me, very honestly, for that 11-year-old me. And then as I started to meet so many, probably the most incredible people I’ve ever met in my life through this eating disorder community and feeling actually a lot of anger that this disease was happening to them.  And then I have a daughter now and I do this work for her. And that is full stop why I do this work and why I will continue to do this work. I have to. have to. I believe in it.

Sam:  It’s such a powerful thing when you’re really clear on your why. We talk about this a lot with our patients and our alums that you have to get clear on the why. Why are you doing this?  And whether it’s for the little girl inside of you, or it’s for your daughter, or for the people you love, or  just for yourself. I mean, that why is so crucial.

Johanna: Yeah. I also, you know, something that we talk about a lot, in fact, our eating disorders awareness week campaign was all around why’s this year. And it was really interesting listening to people because  a lot of folks that come to our group or even we’re connecting with a campaign, we’re like, well, I don’t really have a recovery why. And the first thing that I would say to them is I didn’t have a recovery why either when I started. And because I didn’t have a recovery why, I had to think about what I didn’t want anymore. So my recovery why was to not feel the way I was feeling anymore. It wasn’t like, cause I would be watching some people that were like, oh, my why is to have kids one day or to get married or to be the CEO of Fortune 500 company. I was like, I don’t give a crap about any of that really. And to me, what connected was I just want to be able to get out of bed. I just want to be able to not have my mind going all the time where I’m just so exhausted at the end of the day. So one of the things that I’ve actually learned through my journey, my recovery, my work is that my why has changed over time and that’s okay. 

Sam: Exactly. What a great reminder. It’s so true. And it might take time to, you know, really get clear  on the whys and the whys can be as simple as I just want to feel better. I just want to be able to get out of bed. And that’s a perfectly okay why.

Johanna: Yes, it is. Yes, it is.

Ashley: Johanna, thinking about the whys and about how we figure this out, thinking of somebody who’s maybe just been diagnosed or is in the throes of the start  of their journey with this and is maybe feeling overwhelmed, scared. What would you say to them? What encouraging words?

Johanna: You’re not alone. I would say that. And I would be like, absolutely, you’re feeling all the feels and it’s okay.  One of the things that I have actually written on my desk at my office, “is you don’t have to like to do something or want to do something to do it.”  And that was real important for me because I was always like, well, the stars have to align. It has to be totally perfect, you know? And almost  I think about all the times that I would have this perfect,  well, when this happens, then my recovery will start. Or when this happens, then it’ll be easier to recover.  That day will never come. Those stars will never align. Like it just will always be a reason to still engage in your eating disorder. And so if you are right at the beginning of your journey to recovery first, I think you are extraordinary for starting your journey. It is so difficult and it’s so overwhelming and it’s going to feel like a lot and it’s going to feel like even more, and keep on putting one foot in front of the other. Please do not do this alone. There are communities, there are support groups, there are so many people that are there to hold your hand and walk next to you on your journey. Know that no one is expecting perfectionism. I know that sometimes we internally do. And I also want to name that those around us might also, you know. It’s really hard sometimes when the people around you are saying, you know, are you recovered yet? Like, are you fixed?  You know?  And it’s not going to be a straight line. So give yourself grace.  If you take a slip or trip, a wrong turn, a detour, it’s all part of your journey. We have this amazing support group member who’s been coming to the Alliance for the last five years. I can use her name freely. name is Meryl and she’s in her mid-seventies  and she has a saying, she’s like, it’s just another AFGO- another effing growth opportunity.  So when you have those moments, it’s just another growth opportunity. So just give yourself that grace and think of Meryl. 

Sam: What does Meryl say again? What is the phrase?

Johanna: It’s AFGO, A-F-G-O, another effing growth opportunity. 

Sam: Oh, wow. I have to use that one. That’s the title of the episode.

Johanna: And we actually have Meryl Merch. So it’s her face with her cat eyeglasses. And she is fabulous and amazing and literally started her recovery journey very, like, later in life. And to me, she’s got that hope that recovery doesn’t have a timetable. It doesn’t have a timestamp.  It doesn’t matter if you’ve been struggling with your eating disorder for a beat or a lifetime. You deserve to heal. It doesn’t like, think so often, you know, we think like, oh, are we sick enough or  have we been struggling for long enough? Uh-uh, no. Well, you don’t have to actualize or quantify your struggling. You deserve help and support, full stop, no question.

Sam: Yeah. It’s back to that affirmation. I deserve.

Johanna: You deserve. I hope someone out there uses that. For listeners out there who love someone with an eating disorder, who want or listening today because they want to support in the best way they can. I was wondering any guidance you have for them or anything you wish your loved ones would have done or done differently.

Johanna:  First of all, thank you for loving them so much and for being a support. I even put into words what that means. Take a breath, take care of yourself. You know, I’m sure you’ve heard this in various ways or shapes. So, you know, we have to put our oxygen mask on before we put others’ on. It’s not your fault. You know, you did not cause this.  And we can contribute to the recovery. We can support. You know, take care of yourself. We have, there’s a ton of different support groups out there because the eating disorder does not only affect the person struggling. It affects a family system.  And what I mean by family is blood and not blood. I mean family is who you choose to make it and what you choose to make it.  Get the support; get the education and know that you’re not going to be perfect either. Just how we don’t expect our loved ones that are struggling with an eating disorder to be perfect on their journey.  You’re not going to be perfect either. One of the things I wish more than anything that someone would have said to me is, I’m really sorry that this is happening to you. I can see how hard it is.  And I love you and I’m here to help. ah Because for so long, I thought I chose this. you know, it’s been really interesting struggling and recovering at the time that I did. Then, you know, sort of coming into this world and staying into this world of like, we know so much more about research. We know so much about genetics, about epigenetics, about all of that.  But I just needed someone to see my pain.  And I just needed someone to say, you’re not alone. And I love you. Full stop, again.

Sam: That’s so helpful. Thank you so much.

Ashley: Johanna, thank you so much for being here with us.  Honestly, I’ve just been sitting here in awe listening to you and even teared up a couple times, especially when you mentioned your daughter, because as Sam and our listeners know, I have a almost four-year-old. And your purpose, it does change, and it’s okay. You’re wise. As you grow, your wise can grow. So just thank you so much. It’s been such an honor to connect with you and if our listeners want more information on the Alliance, how do they do that?

Johanna: Yeah, so at the Alliance, we have the National Helpline that’s open Monday through Friday from 9 a.m. to 7 p.m. And what’s really cool about our helpline is that it’s staffed by licensed and specialized therapists. So everyone who you talk to, are specialists in eating disorders. We can help, just listen. We can connect you to care from an outpatient provider all the way up to whatever level of care you need. And we also hold 21 free weekly therapists like support groups for individuals struggling with eating disorders, as well as their loved ones. You can find us at AllianceForEatingDisorders.com or across all, like every social platform @AllianceForED.  But we’re here and we want to help. And Ashley, I just wanted to say one more thing about what you just shared about your kiddo is the thing that probably is one of my most cherished stories. And what really keeps me firmly grounded in my recovery is it was, my daughter was born in July and in November, I convinced my husband to go shopping the day after Thanksgiving on Black Friday. Yeah, I went shopping.  And it was one of the first times that we fully left her alone and we went on our own. We were like, okay, we’re not going to talk about her the entire time that we’re out. Like we failed after a minute and, we’re talking about just,  you know, cause  I was told for 20 years, I couldn’t have children and  I got pregnant with my daughter and you know, she’s to me, she’s, you know,  and I was talking to him and I said, you know what? She’s the best, best thing whatever it is hands down. And my husband, who sometimes is way smarter than I am, he looks at me and he goes, actually your recovery is the best thing that you ever did. He’s like, cause if it wasn’t for your recovery, we wouldn’t have her. We wouldn’t have us.  You wouldn’t have The Alliance.  And it was such this moment of like, when I, you know, I look into her eyes and I’m like, recovery just, it took everything out of me.  And I do not regret it for a moment. And I think that that’s something that I hear all the time from other people that have gone through the journey of recovery is no one says, oh, that sucked. Wasn’t worth it. They say, I’ve got a lot of, you know, scars and battle wounds and I would still do it 10 times over to get to where I am. So, if you’re listening and you know, you’re feeling a lot, just keep on putting that proverbial foot in front of the other because I promise you it’s worth it.

Ashley: Thank you so much, Johanna.  It’s been awesome. And thank you to our listeners for being here with us today.

Thank you for listening with us today on All Bodies. All Foods. presented by the Renfrew Center for Eating Disorders.

Sam: We’re looking forward to you joining us next time as we continue these conversations.

[Bouncy theme music plays.]