S3 E4: Jenni Schaefer on Anorexia: Americas Greatest Mental Disorder

Eating disorder recovery advocate Jenni Schaefer draws on her personal experience and vast research to help others dealing with one of America’s deadliest mental health disorders. Schaefer knows firsthand the damage eating disorders can do, and she takes a holistic view on these topics, knowing there may be a connection to trauma or other co-occurring conditions. Through her work as an author and speaker, she challenges the very foundations of diagnosis and treatment to help people get the care they deserve.

Podcast Transcript

Jenni Schaefer
When you talk about recovery, you know, the human condition is one of constant growth and every human on this planet is always working on something or they could be. So again, it comes back to it’s not about the label. It’s just about what are you working on right now because we all are working on something.

David Condos
Welcome to Beyond Theory, a podcast powered by Meadows Behavioral Healthcare. That brings you in depth conversations from the frontlines of mental health and addiction recovery. I’m David Condos. The most fatal mental health issue in America isn’t depression or schizophrenia. It’s anorexia. So how does eating disorder recovery advocate Jenny Schaefer, help others overcome this deceptive disease? And how can healing trauma help mend the bonds between our brains, our bodies and our plates? Let’s get out of the abstract and see how this applies in the real world. It’s time to go beyond theory.

Jenni Schaefer
Hey, I’m Jenny Schaefer. I am a senior fellow with The Meadows and I’m an author and speaker talk a lot about eating disorders and trauma and PTSD. from a personal perspective, I’m not a clinician or researcher. I’m just someone who’s been there. And I try to spread hope, because that’s kind of the way I got here is from people spreading hope to me.

David Condos
Oh, Jenny, thank you so much for being with us. Here at the US Journal Conference in Scottsdale, Arizona.

Jenni Schaefer
I love this conference. It’s amazing.

David Condos
All right, well, let’s start with your story. Your background like you just alluded to, you have very personal experience deeply personal reasons for doing this work. So let’s kind of start with the beginning and lay the groundwork there.

Jenni Schaefer
Yeah, well, thank you so much for having me. So when I was four years old, and this surprises a lot of people, but when I was four years old, I already heard this negative voice in my head. I learned later to call this voice Ed. So my first book Life Without Ed, that’s not my ex husband, “Ed” is an acronym for eating disorder, I learned to kind of personify it, putting it, put it in a chair, talk to it. But at four years old, I heard this voice of Ed already, of course, at that point, I was four, I didn’t recognize that these thoughts were different. But I had negative body image thoughts at four. So I remembered four years old, four years old and negative body image, often for people with eating disorders is kind of the first piece to creep in. And oftentimes, importantly, if you’re out there struggling with an eating disorder, that’s usually the last part to get better, which makes it really, really hard because you end up being in this body that you don’t recognize you don’t like and you just are told to just sit there and wait, and eventually your brain. Yeah, and you kind of feel yourself first your brain ends up changing framework slowly than the body does. So negative body image tends to be a stuck point for a lot of people. Paradoxically, eating disorders are not really about body image. They’re not really about food. Importantly, I had personality traits, I was born with a certain temperament that made me more vulnerable to having an eating disorder and what I actually try to encourage parents and teachers and coaches and doctors and people who see young folks, what you can often look for is these personality traits. So for me, my personality traits that I inherited, that really fueled my eating disorder were perfectionism. We talked earlier, you guys told me how close to get to the mic. And thank goodness, the wonderful camera guy over there. Caleb was telling me “Don’t worry, you don’t have to stay like five inches.” I was like, okay, you know, I can relax but my perfectionistic tendencies to, you know, be rigid rule driven. And that’s great if you’re going on a diet and I mean, great, you know, in that way we know in the eating disorder field diets don’t work. Also obsessive compulsive kind of personality, persistence. If I if I put my mind to something I can do something delayed gratification. When I was a kid, I would get Halloween candy and I would save it the whole year. In part like it was this delay gratification. I’m going to wait and in part I was afraid of the calories but if you think about just those traits and apply that to dieting Wow, that’s how I was able to diet successfully and I mean that in an totally not successful way. But those traits were enabled me to to really stay on that restrictive eating path. At the same time. Most people with anorexia nervosa end up flipping over into binge eating I did. It’s biological. We need food to survive. So 50 to 80% of an eating disorder is genetic inheritable. That’s big compared to men personality traits. So that’s the personality traits. So we often say genetics loads the gun when it comes to an eating disorder, and the environment pulls the trigger. So at four years old, I already had the genetics I mean, I was born with them, but The environment already that was pulling the trigger for me, dance class. And you don’t know how many people I’ve heard come up to me and say it was my dance teacher or dance class, I heard this in dance class when I was 12. going through puberty, a dance teacher said, You guys got to worry. Now your thighs are going to start getting bigger. And here’s what you can do. She showed us these things. And I became obsessed. Now most people in the room just went on and we’re fine. But I had those traits. And this is not to put dancing down. There’s nothing against dancing, dancing is great. It’s a way to be in your body. And that’s actually really helpful for some with the disorder. But what I like to tell parents is, if your child is in a dance class, find out what the teachers are saying, find out if they know about eating disorders, do you have a eating disorder informed dance center, and we use the word trauma informed a lot, meaning different, everybody really needs to be trauma-informed. But we also need to be eating disorder informed, because eating disorders are everywhere. If you’re a clinician listening to this, you might not be treating eating disorders, but you are treating eating disorders, eating disorders are coming into everyone’s office, you can’t not see eating disorders, because they’re prevalent, and they’re sneaky. Like some of the stats that are key is, you know, one in 200 us adults will have anorexia nervosa official anorexia, one and 201 in 20, will have key symptoms of anorexia, bulimia or binge eating disorder, and struggle, often significantly, and often without getting help because they don’t quite meet the official criteria. And what one in 10, teenage girls will struggle on that level. So you’re kind of looking at the system we have in mental health where we say like all these people have eating disorders, and we put them in a box. And a lot of the people who fall out of that box, don’t think they’re good enough or worthy. And this is the word language people use. But those are often the people that were completely missing. And we’re missing people with full blown eating disorders, too. We’re missing a lot. We’re missing men, we’re missing LGBTQ, we really need to broaden our eyes and open our eyes and see that this does impact a lot of people more than we know.

David Condos
So that’s getting into your presentation here at the conference on Almost Anorexic. And that idea of, you know, people who maybe don’t meet that that medical diagnostic criteria. So could you lay out? What is that diagnostic criteria? like? What does it mean for somebody to be diagnosed? What does it mean for them to still have symptoms? Yeah, and not going to be there?

Jenni Schaefer
Totally. Well, I have my little book here, Almost Anorexic. And I was, I wanted to tell you guys a funny story. You see the cupcake on there. We fought hard for that cupcake.

Jenni Schaefer
On a scale.

Jenni Schaefer
We didn’t want to scale because that’s stereotypical. But it was it was a broccoli floret. And my, my co-author, Dr. Jennifer Thomas made a PowerPoint of why a cupcake is better than a broccoli. And the reason is, the broccoli was stereotypical. And this comes to your question. People tend to think that someone with anorexia would like way a Florida broccoli. Well, no, they wouldn’t. Like that’s not the case. That’s not what it’s about. So you for anorexia, you have to be underweight, you will not get that diagnosis, if you are not underweight period. Now, the good news is recently the diagnosis got a little more flexible. It used to say you had to be, you know, kind of 15% below ideal body weight. And now, the clinician, whoever you’re working with can determine by looking at you, are you underweight, are you not, but that’s really the key difference with anorexia. And the problem with that. I know, so many so many people who have anorexia, all the signs, except they’re not underweight. In fact, many of them, most of them that I know, are told by their doctors, they need to lose weight. You know what it’s like to have anorexia to be restricting on a level you are malnourished, you can be malnourished at any weight. And to go to a doctor and have the doctor tell you to lose weight, when you know what you’re eating. And this is why these podcasts are important is we need to get this information out to doctors, but that’s really what makes official anorexia different is that under weight feature, the good news is with the latest diagnosis, diagnostic criteria, they took that kind of catch all category like off bed, and they made five subtypes. So what we have now that’s important to the question is, we have something called atypical anorexia nervosa, so my friends who I was talking about, they would now fall into that category. And it’s not about being a label where people were not disorders, but for a lot of people getting some kind of label, feel. It’s validating. It feels like there’s other people out there…

David Condos
…It’s just to understand that I’m feeling something and it’s real.

Jenni Schaefer
Yeah. And so that’s like key I’m writing a book right now on PTSD. And I actually, the diagnostic criteria, kind of makes my brain hurt sometimes, but I have to remember why we do it and, and it is to help people. It’s for research. It’s for validation, but unfortunately, unfortunately, that’s the whole reason we wrote this book and this is a book series with Harvard called the most effective mean, this this crosses boundaries, there’s a book called on Almost Alcoholic. Everybody knows people who struggle with alcohol, maybe not to an extent where they’re officially diagnosed with substance use disorder, but they struggle, they need help. There’s a book called almost anxious, almost depressed, almost a psychopath. That’s a really good one. If you’re out there in the dating field, you should read almost it’s like, it’s, it’s for you to detect if who you’re with is a psychopath.

David Condos
So I’m envisioning, I’m envisioning kind of a spectrum then. So you have people who are diagnosed with anorexia or another eating disorder. But then you have all these other people. You said, it’s, it’s even more than one out of 20 people.

Jenni Schaefer
And one in 10 teen girls. Yeah.

David Condos
And so all these people are still feeling symptoms. So what kind of why is that? And what does that mean?

Jenni Schaefer
Yeah, well, that’s I mean, so we’re still looking at a genetic environment interaction. So we have, they have the genetics. And then we have this environmental pressure that says, to be happy is to be thin. A lot of people in our country and across the globe, step on a scale every day. And that scale tells them how to feel about themselves. And I don’t care about severity or anything else. I don’t care how many times you’re bingeing per week, or what you’re restricting, you might be eating completely, quote, normal. But if you step on the scale every day, and you feel horrible about yourself, you deserve help. Some people struggle more with the body image component like that. They might be nourished, and they’re fine in terms of nutrition. But if you hate yourself, because you went up a pound, that’s different. And it’s important to note, you know, everyone’s different. For some people on eating disorder, it might start as kind of this negative body image thing, but for a lot of us, it becomes a control thing. For some people with trauma, an eating disorder might be about feeling empty. It’s not about feeling thin, it’s about feeling nothing at all. But everybody’s ignoring the trauma. And if the trauma is the fuel, then we have to deal with that, too. So as you can see, I mean, this is a complex issue like this is everybody’s so different. You know, not everyone with eating disorder has trauma. Yeah.

David Condos
And so you talked about having that control. And it being like the one thing that you can control that I think that that explains it to me clearly, yeah, to be like, “Okay, well, maybe you had trauma,” you have other things swirling around you that you feel like art may be out of your control. But then you have this one thing, right, right. So is that what we see for a lot of motivation,

Jenni Schaefer
You nailed it for a lot of people. And it kind of becomes a way to manage emotions. I mean, the people I know in my life, who are most healthy and balanced around food and body image, are the people who’ve had eating disorders and gotten better, because we’re the ones who had to go to a body image therapy grid, you had to really, you know, we had to look at it, where most people don’t ever have a dietitian once a week for five years. You know, I did, I mean, so I had this great, specialized resource that most people in our country never get. And I’m actually seeing that with post-traumatic stress disorder too, people with PTSD, were forced to reevaluate how we see the world, how we shape our lives, how we view ourselves and others – we’re forced to look at everything. And most people aren’t. And so I would never wish an eating disorder or PTSD on anyone that said. That said, the gifts that you get from recovery are incredible. It’s I didn’t get the gifts from the eating disorder. They came from the resilience and the recovery and getting help. You know, I didn’t do it on my own. That’s for sure.

David Condos
And it is it’s how it changed you.

Jenni Schaefer
Oh, yeah, completely. I mean, changed everything. Like, it’s like, I look back at the way like my first book Life Without Ed or, or even this book, Goodbye Ed, Hello Me, I look back at that. And sometimes I’m forced to revert you don’t like edit and stuff. And I don’t even relate to that mindset anymore. Like, I can’t believe that was me. But it was, but like, that’s the shift that can happen. I mean, I can’t believe like this book, there’s a chapter all about fight with a hamburger. I mean, I had a hamburger like two days ago, and there was no, it was just a hamburger, a hamburger is a hamburger now. It’s not something to determine myself worse. So that’s something everyone needs to learn whether you have an eating disorder or not.

David Condos
Right, here’s a good gets back to how you said our society has right disorder, right? Even even if someone doesn’t have an eating disorder, they would still look at that cookie or hamburger or whatever. And even if they’re going to eat it, they might feel bad about it, or let it tell them like Well, I I failed against the rules that I’m I think I might be following.

Jenni Schaefer
And you’re Yeah, you’re so right. And I mean, and I’m not saying not everyone, there’s some people I know who just would eat the cookie in there. But you know, not everybody has that tendency, but in our society that a lot of people do and, and a lot of times something that’s a sign of an eating disorder is kind of what you alluded to you eat the cookie, and then you feel bad about it. So then you compensate for lunch, or you compensate later in the day and you start doing these games with food were way too much here, I’m going to do this and, and maybe everybody does that on some level in a, “normal eating kind of way.” But in an eating, what happens is, that’s a slippery slope. And for me, I don’t I don’t have that mindset anymore. I can’t. But intuitive eating is a really helpful concept for just everybody’s just listening to your body. But importantly, if you have an eating disorder, right now, you can’t hear your body. So that’s why we need professional help. I mean, if I listened to my body, when I was struggling with anorexia, my body said, “Don’t eat.” so that that tip of intuitive eating was not helpful. You need to get a level a level, yeah, you have to get to a level deeper than that. So at the Meadows Ranch, where we treat eating disorders, and specialize in trauma, too, which is unique and awesome, and the reason I came to The Meadows, but we educate patients on intuitive eating, but no patient is ever going to go to a treatment center for even if they stay three months, and walk out being a complete intuitive eater. It’s just not possible. An eating disorder, it’s more of a process when you talk about recovery. You know, the human condition is one of constant growth. And every human on this planet is always working on something or they could be. So again, it comes back to it’s not about the label. It’s just about what are you working on right now? Because we all are working on something.

David Condos
And so one of those layers I know for you was trauma. Yeah. And you said that’s that was kind of your second recovery. Yeah, that you went through? Could you talk about that, and how that has helped your eating disorder recovery?

Jenni Schaefer
Mine, mine was a little bit different. So an eating disorder can and a lot of mental health conditions can be like, like an ember for PTSD, or can be like, like a smoke screen. So what I mean by that is, my eating disorder was both So here’s an example. So I was 22 years old in recovery for an eating disorder, getting help from a lot of eating disorder professionals. When I was in a sexually abusive relationship with a man it was my first experience with that, and I, now I know, and I’ve learned to say the word rape, but it took me 10 years to say that word. So that was a key point. For me. Having an eating disorder at that time made me more vulnerable. It was an ember for PTSD, it like started the PTSD flame, because I didn’t have a coping strategy to deal with the trauma. So trying to kind of reframe these things. Recovery is not about getting rid of symptoms, really. I mean, it’s, it’s really about what are we getting? What are we moving toward? And I try to encourage people, you know, create a better life starting now. We often think, well, I can’t go to school till I’m better from my eating disorder or PTSD. Well, what can you do now? On some level, there is truth, like we need to rest and for a while with PTSD, I quit everything. I canceled everything. I needed to do that. But there came a time where I needed to add, and I needed to stop running away from and start moving toward. So I encourage people with that, too.

David Condos
Yeah. All right. Well, to wrap up for somebody who’s listening who wants to dive in even deeper on this, what would be, you know, a book resource that something that you point them to?

Jenni Schaefer
Well, in terms of eating disorders, I mean, I would check out the National Eating Disorders Association, incredible resource, and I have, in recent years have fallen in love with ADAA, and it’s the Anxiety Disorders Association of America. They have an awesome website, too. There’s incredible books out there. I mean, they’re here at this conference in terms of trauma, Bessel van der Kolk. He’s actually not here. He was here last year, but the body keeps the score. Peter Levine is one of our biggest heroes. He’s speaking like in five minutes and so I’m gonna go watch him but his book Waking the Tiger really saved me. I have a friend Shannon Cutts wrote a book Beating Anna. Anna is an acronym for or stands for anorexia. And my friend Robyn Cruz Making Peace with Your Plate, she struggled with substance use too. So those are some but if you go to my website, LifeWithoutEd.com, which is easier than spelling my name, JennySchaefer.com. You can there’s actually resources that has links to all of those things. So and of course, check out the meadows ranch and the meadows web pages. I mean, the meadows ranch has an incredible blog with great information on eating disorders and trauma.

David Condos
Yeah. All right. Well, just just to leave listeners with one last thing. What What’s your favorite piece of advice? Something that’s meant a lot to you something that you want to pass on?

Jenni Schaefer
Oh, yeah. Well, hi. Something actually, I heard last night. This is a new one. And I started applying it last night. It’s really helpful. So Jack Canfield spoke, who of course Chicken Soup for the Soul, amazing. And he had on his screen, the word can’t, like ca en ti cannot. And he had this big like circle with an X through it. And he said, take that word out of your vocabulary. And that was key for me because right now I’m trying to finish this book on PTSD. And I have this voice in my brain, like you’re never gonna finish on time that it’s like, you know what, like, I’m going to take “can’t” out of my vocabulary. And so that’s my tip because from him even just that shift like I can do it. It feels better in your body. It’s just a better way to live. So I would say like Jack Canfield says, everybody, let’s take “can’t” out of our vocabulary because I’ve already noticed in one night, a shift in my body. So you can, you can recover from these things.

David Condos
Jenny Schaefer is an ambassador with the National Eating Disorders Association and a senior fellow with The Meadows based in Austin, Texas. Find out more about her books, including Life Without Ed, almost anorexic and her forthcoming book facing the invisible monster at Jenny Shaffer comm beyond theory is produced and hosted by me, David Condos. You can discover more from this podcast, including videos of each conversation and beyondtheorypodcast.com. Finally, thank you for listening. And I hope you’ll join us again next time for another episode of Beyond Theory.

 

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