Judy Krasna: Unpacking the Challenges of Eating Disorders in Families

This Way Up - Episode 18 - Judy[00:00:00]

 My one message to parents really is, you know, a lot of parents are like, well, we don't want to rock the boat. Our kid's doing really well in school. Finally, they're well adjusted. Finally, they're happy. Finally, they have friends. And nobody wants to, you know, interrupt that, but you have to, if you see behavior that you think is an eating disorder, you know, you can't just wait and see, wait and see is the worst thing that you can do in this circumstance.

Welcome to This Way Up. We are bringing you engaging, informative, and inspiring conversations surrounding all aspects of mental health from the perspective of us as parents and caregivers. I'm Andrea Nanigian. And I'm Emie Waters. When someone you care about is struggling with their mental health, this can be an incredibly stressful and challenging time.

So we're here to provide valuable resources to support you as you navigate this journey.

Thank you everybody for joining us today. Today's guest is Judy. She is the executive director of a worldwide organization to help parents of children with eating disorders. And I really feel like even though Judy's specialty is in eating disorders, the advice that she gives is really going to resonate, I think, with all parents.

Oh, absolutely. Everyone should tune in because she reminds us how to be conscious observers of our kids behavior, how to respond when needed in a timely way, and also how to trust our instinct as parents. So for everyone listening, if this resonates with you, if you know someone who could benefit from this content, as always, we really need your support to continue to grow by sharing this episode with everyone you know and downloading and giving us a review.

So everyone, here's Judy. Judy Krasna is the Executive Director of FEAST, F E A S T, Families Empowered in Supporting Treatment for Eating Disorders. She is a writer and an eating disorder advocate, both in Israel, where she lives, and globally. Judy is deeply committed to helping and supporting families of people with eating disorders and to promoting awareness about suicidality and eating disorders, especially after her daughter, Gavriela, took her own life in 2020 after a prolonged battle with anorexia nervosa.

She is also passionate about working with providers to ensure that parents receive the psychoeducation, skills, and tools that they need to support their loved one's eating disorder recovery. Good morning, Judy. Thank you for joining us. Thank you for inviting me. We really appreciate it. I'd like to tell a little of my story, if that's okay with you.

My daughter was 14, and she told me that she was going on a diet with a friend. And I told her she didn't need to go on a diet because there was really, really no need. And she changed her tune to, oh no, I want to eat healthy. Now, your child comes to you and says, I want to eat healthy. And this is a kid who only ate pizza and chicken nuggets and French fries and grilled cheese.

She never ate a vegetable, she rarely ate a fruit, and I was thinking like, oh, okay, this was a great thing, right? Yeah. This kid who eats junk food, right, all the time now wants to eat healthy. So I was like, okay, and she told me that, you know, she and her friend were gonna diet for two months, and the last day of school they were gonna go out for ice cream.

And I figured any diet that ends with ice cream, you know, how dangerous could it be, right? Yeah. So, She went on this diet with her friend, her healthy eating with her friend. Quite honestly, I didn't see much healthy in her eating, but you know. I wasn't really expecting it, and I didn't think much of it, to be honest.

And throughout the summer, you know, kids in the summer, especially teens, they're on a weird eating schedule. They're on a weird schedule in general. They get up at 11, they eat breakfast at 2, like, Yeah. So, I, and again, I also, I have four children, so there are kids in the house on these weird schedules. And at a certain point, I realized that I wasn't really seeing her eat.

I would say to her, Gabriella, did you eat breakfast? Gabriella, did you eat lunch? And it was always kind of like, I just ate. I'm about to eat. I'm going out. I'll eat at my friend's house. But at a certain point, I did realize that I wasn't seeing her eat. And we went clothes shopping before the beginning of school.

And she reached her hand out of the dressing room because I needed to exchange one shirt for another because it was the wrong size. And my heart just Dropped. I mean, dropped. Because, you know, it was like a stick figure arm. I mean, it was really like a skeleton. And I realized at that very moment, you know, there's moments in life where you can, you remember where you were standing exactly, what you were feeling, what you were thinking.

Yeah. And that's one of those moments for me, is that moment of, oh my god, there's something really wrong here. So, While she was in the dressing room, I went to the front of the store and I called my husband and I said, we really have a problem here. And that night we took my daughter into a private room without anyone else around.

And we said, we think you have a problem. And to our surprise, she said, I think I do too. And this is all just after two months. This is, well, it was a little more than two months because she started her diet in around May. So it was really the summer. It was probably about five months at that point. And she said, but I want you to please let me handle it by myself.

Now, this is a kid who got straight A's, who was self motivated, who was an achiever, who was so smart, who always did what she said she was going to do. And we didn't understand that an eating disorder is an illness and that she had no control at all over, you know, this illness. And she didn't realize that either at that point, you know, she thought, Oh, I can handle it just like I handle everything, but she couldn't.

And we made the mistake of giving her more time to handle it on her own. And by the time we got to the doctor, it was already pretty far along in the progression of her illness. So we unfortunately didn't catch it early enough and we didn't act on it early enough, which is a mistake that a lot of parents make just because you don't know, you don't know what you don't know.

And then once you do know, you scramble, right? You scramble. And I did everything right in going to the doctor. I called the pediatrician first before I brought her in. I said, I have a suspicion that she has an eating disorder, hoping that he would back me up. We went into his office and he didn't. He basically looked at her and I kept bringing her back over and over and over.

And he kept saying, well, it looks like depression. She has a flat affect, but I don't really see an eating disorder and her weight was going down and down and down and we were really getting scared and she had other symptoms. I mean she was dizzy, her heart rate was low, and he kept kind of denying that she had an eating disorder.

So we were fighting him and at a certain point he was like, well take a step back mom because you know you're a little overbearing here. And I couldn't take a step back because you know as a parent sometimes you know there's something wrong. Like, you know it in your gut, you know it in your heart, you know, you know there's something wrong and you can't just let it go.

So, you know, we persisted and did get a referral for Eating Disorder Services, but the thing that I've learned is that when you lose time, you can't make it up. You know, that time in the early diagnosis, in the early intervention, it was gone and we couldn't get it back. So, my one message to parents, really, is, you know, a lot of parents are like, well, we don't want to rock the boat.

Our kids doing really well in school. Finally, they're well adjusted. Finally, they're happy. Finally, they have friends. And nobody wants to, you know, interrupt that, but you have to. If you see behavior that you think is an eating disorder, you know, you can't just wait and see. Wait and see is the worst thing that you can do in this circumstance.

Can you take a moment and share why there is a definitive line between where it's okay to be treatable and where it, when it turns into something more serious? Okay, so that's a really good question. The way that eating disorders work, in my understanding, is that at a certain point, your intake is less than your output, meaning you're taking in less calories than you're expending.

And that puts you into what's called negative energy balance. Negative energy balance means exactly that. I mean, calories are also energy. If you look on a label, you see Kcal is energy. So, basically, you're not taking in enough calories and you're burning more than you're taking in. And that puts the body into this state of negative energy balance.

You know, people have been working for decades to try to understand the mechanism. What triggers this in the brain? How does negative energy balance trigger an eating disorder? And no one, they've done fMRIs on brains of people with eating disorders. They understand that the pleasure centers in a brain is not reactive anymore.

Like you, take your favorite food. If they showed you a picture of it when you're in an MRI machine, your pleasure center's gonna light up, right? It doesn't light up in the brain of a person with an eating disorder. And it's not just food related. Somehow dulls the pleasure centers in the brain. And basically, something happens.

When a person goes into negative energy balance, something happens. Where basically it just flips a switch in their brain, which is the least scientific term, but it's actually probably accurate. All of a sudden, this person develops an eating disorder. And that Lying is, it's impossible to say, Oh, at this moment in time, this day, this week, you know, it's something that happens.

And because most parents don't know anything about eating disorders, it happens [00:10:00] on our watch and under our noses. And also people with eating disorders, a lot of times they'll wear baggy clothing. They don't want to be discovered because they like their eating disorder. It's, it's called egocentonic, and also there's an element called anosognosia, which means they're not cognizant that they have an illness.

Just like people with schizophrenia don't know that they're schizophrenic, people with eating disorders really, legitimately don't understand that they are ill. And they also legitimately believe that their eating disorder is giving them something. It is improving them. It's enhancing them. It's making them better.

And if you felt like that about something, you wouldn't want to give it up either. So what happens basically as a parent is you're trying to help your child who won't realize that he, she, or they have a problem, who don't want help, and who feel like you're actually getting in the way of their life and their happiness.

And, you know, I always say for parents, you're fighting, you know, on different fronts. If your child has an illness like cancer or diabetes, right, you know, they're interested in fighting the illness with you because they just want to, Be happy and live a life and be healthy. When your kid has an eating disorder, you're fighting your child and you're fighting the eating disorder.

You're fighting two fronts simultaneously and not being united with your child in this fight, it takes such a toll on you psychologically and mentally because it's just exhausting. It's fatiguing and it's, it hurts. Like, it hurts because you feel like you're hurting your child in order to help them.

Yeah, and so your child doesn't see the need to be better or change. They have no will. Not at all. And they think you're crazy. They think you're crazy. And what happens is when you go to a primary care physician, who sides with your kid, then you're just validating the illness. And it happens all the time where a physician will look at a, you know, a mother will walk in and say, I think my daughter has an eating disorder.

And the physician will put her on the scale and say, Oh no, no, no. Actually she's like five pounds overweight. Mm. In the presence of a kid. Right. So we are really fighting, we're fighting a system, multiple systems, to try to get the help that we need for our kids. Yeah. Can you go back? I interrupted you because I wanted to understand the timeline piece of it, but can you go back?

You were saying that your pediatrician finally gave you a referral to a nutritionist, I think you said. Can we start back up there? I'd like to hear the end of this journey. Unfortunately, our journey does not have a happy ending, and we went to a dietician, and my daughter went to a therapist, as part of, you know, this program that we were in, and the first day that my daughter went to the dietician, she was 14 years old, I went with her, I took her.

And we're waiting outside in the waiting room and then the door opens and the dietician calls her name and we both get up because she's 14 years old. And the dietician took one look at me and said, no mom, you stay outside. Oh, that's so surprising. And my daughter said, but I want, and that's the thing, and my daughter said, but she's my mom.

And I wanted her to come in with me, and the dietitian was like, no, mother, stay outside. And I listened outside the door, it was a 45 minute appointment, because it was the first appointment, my daughter cried for 45 minutes straight, and the mother that I was then, respectful for authority, and would never disobey someone who told me something, you know, is not the mother who I am now, I would never now sit for 45 minutes outside of a door, and listen to my daughter cry, I would never now let someone dictate something against my daughter's wishes.

But, in this case, I was obedient, and after 45 minutes, I walked into the room when she invited me in. She hands me my daughter's meal plan, and she says she's responsible for eating this food. And I looked at her, literally, I thought I was just like, it was a joke. So I said, I'm a little confused because she has an eating disorder.

If she could eat on her own, we wouldn't be here. And she said, no, she needs to eat independently. So of course, this is what a professional told me. So I listened. And my daughter kept losing weight and losing weight and losing weight. And her health was really in a precarious situation at that point. And a friend of mine actually had a daughter with an eating disorder.

And she gave me an article from the New York Times. And it was an excerpt from a book called Brave Girl Eating by Harriet Brown. And it talked about how parents have to eat with their children with an eating disorder. You don't just let your kid prepare their own food. You don't just let them sit at the table by themselves because they can't.

They actually can't. Yeah. It's like accountability. They're not being willful. They're not being disobedient. They can't. I've heard it described for a person with an eating disorder. You give them a plate of food, it's like you're giving them a plate of snakes. Like, the fear that you would have if you were handed a plate of snakes, that's what they feel about food.

It could be pizza. That's what any of the eating disorders really, I mean, more anorexia and ARFID, the truth of matters, than bulimia and binge eating disorder. But those two, you know, specifically, yes. So, of course they're terrified, and of course they don't want to eat it. And there's also, I think of eating disorders as abusive boyfriends.

There's that voice in your head and it basically says, you're worthless. You don't deserve to eat. You don't deserve this food. You don't deserve your family. You don't deserve to be happy. And this voice is just a constant. It's just running constantly through their head. And that, as a parent, is probably one of the hardest things of having a child with an eating disorder, is knowing that they're being abused and there's nothing you can say.

Meaning, of course, you're trying to counter that. And, of course, you're saying all the time, we love you, you're worthy of love, you're worthy of, you know, everything, but it's futile to a degree. I mean, you have to say it, and you hope that they'll hear it, but it's really, really hard. So, at that point, we I read this book, Brave Girl Eating, I went and I bought the book.

And I understand that there is a method called family based treatment, which is totally different than the type of treatment that we were getting. And basically, the premise of family based treatment is that families, parents, should be partners in treatment. Parents should be responsible for feeding their children.

Nutrition, or nutritional restoration, is the first step toward recovery. You know, don't do the whole psychologist thing, don't do the therapy piece, just feed them. And there's ways to feed them. Real quickly. So giving the, the child a menu, basically what to eat is common practice. That is something that is seen, um, across the board.

And then there is the piece that you're talking about, this evidence based or family centric eating. So there are people who do family based treatment that work with dieticians. Okay. So they do work with a meal plan. Or, you know, with exchanges or these type of things, and then there are people who families who work totally on their own, meaning they work with a family based treatment provider.

But it's really meal support. It's really showing them how to get through meals, how to make sure that they eat. The premise also is that parents fed their kid before they got sick, right? We know how to feed our kids. We know what our kids like. We know what they like to eat. We know how they've eaten since they were born.

So we're perfectly capable of feeding our own kids. We don't need someone to come and tell us, Oh, two tablespoons of peanut butter on two pieces of whole wheat bread and a banana. There are parents who prefer to have a dietitian work with them. I liked working with the dietitian because it put the accountability on the dietitian and it put the blame on the dietitian.

So if my daughter was like, Oh my God, I don't want to eat this. I'd say, I'm so sorry. I know it's really hard for you. This is what the dietician said you have to do. Yeah. It's like the prescription is given to you. Exactly. And then your job as the parent is just to make sure that this protocol is executed.

So then you sit together and eat together. It is. And the thing about family based treatment is everyone has to eat the same thing. Meaning, you know, the person with an eating disorder can't have their own meal plan because otherwise you have mom eating a salad and dad eating, you know, his chicken cutlet and vegetables and this kid has to eat a big plate of pasta and dessert and it's not fair.

Yeah. So we have an expression in our community called bite for bite. You have to match your kid bite for bite. And it can be uncomfortable for some parents, but it's really the most successful way to lead your kids toward recovery is to lead by example. And to say, all food is good food, this is good food, this is what your body needs, this is what's going to help you get better.

And we see also, I mean, there's studies done that talk about the role of fat in the diet of somebody recovering from an eating disorder, and how fat helps recovery. So the types of foods that you eat matter. To get to the end of mine, eventually we did find Good eating disorder treatment. The thing that I tell especially to providers and especially to primary care physicians who sometimes do misdiagnoses is, again, you can't get that time back.

Meaning, we lost a year and a half or two years to bad treatment. And it's just like any other illness. The longer you leave it untreated, the more dangerous and life threatening it is, the more damage it does to the body. This is really what happened with us, is that by the time we got into good treatment, my daughter's eating disorder was very entrenched.

So they were able to turn it around to some degree, but she was never able to fully recover. There were periods where she was very functional. She was able to do the things that she wanted to do in life. She had gratifying jobs, she felt fulfilled. She was always part of our family, but unfortunately she took her own life about three years ago.

which is, unfortunately, suicidality is a part of eating disorders. And it's something that providers don't really talk about and don't educate parents about. And my daughter had an eating disorder for quite a few years before she developed the suicidality. And I kind of thought like, okay, well, I got this, right?

Right. And she was [00:20:00] stable at that point. Her weight was stable. She wasn't in any medical danger. And then all of a sudden, the suicidality creeps in and it's like a whole other illness. And then you have to teach yourself what to do about that. And suicidality is much more terrifying because you just never know when or how or what they're thinking.

And you have to learn really a new language and ways to monitor your kid and make sure that they're as safe as they can be. And it was really, for us, it was a very difficult journey. It was a 14 year journey. Which, unfortunately, we didn't get our full recovery, but even with that, in my situation, I can say, really, with a honest heart that eating disorders are treatable, that people really can fully recover.

You need the right treatment. It needs to be timely. You know, you have to have this family involvement or you have to find a treatment center. which can give the kid or the adult what they need. You know, you really, we, we had the perfect storm for failure. There are families who have the perfect storm for recovery.

Oh, that's beautiful. And for whatever reason, we didn't get the recovery, but there are many, many families who I deal with every day through my work that I see. But their kids really are recovering. Judy, what do you think is optimal timing and, um, you mentioned getting good treatment. What would that look like for people who are listening that are looking for direction?

Originally, eating disorder treatment was developed. The thought really was that families cause eating disorders. There was a lot of blame that went on families. There was this presumption that it was the family dynamics that somehow caused this illness. And one of the things that I like about family based treatment is that it's totally agnostic about cause, right?

We don't know what causes eating disorders, and I tell people that all the time. We don't know what causes them, we just don't. So basically, any type of treatment that blames parents is bad treatment. Sure. Any type of treatment that isn't evidence based is bad treatment. It doesn't mean that it won't work, but it means that it's not a good option.

You know, there are families out there that try things that I would consider to be off the wall crazy. But you know what? They've tried the more conventional treatments and they didn't work. And I understand that as a parent. I understand that you just want your kid to get better. So you will try whatever it takes.

But that should be the last resort. The first line of treatment should always be evidence based. There's family based treatment, there's CBT, there's DBT, there's a lot of modalities of treatment which are proven effective. It really depends on the situation. The thing about family based treatment also is that it requires full family participation, not as in the full family, but parents have to be all in.

Which means sometimes one of the parents have to leave their job. Now they have to take a leave of absence because you have to be feeding your child three meals and three snacks a day. It is a full time job, but this is the way to get your kid to recover. There are some families who can't do that. So you have to come up with.

other methods of treatment, you know, that can work, but you can't recover from eating disorder without the weight restoration. Like that is just, you know, the weight has to come back on, the brain has to be reset, that negative energy balance has to be reversed, only then can a person start to recover. And it can take a long time after weight restoration for recovery to happen.

A lot of parents are like, well, My kid's back at, you know, their ideal target weight for six months. Why are the behaviors still there? And the answer is because the brain has to heal. This is a brain based illness. People don't think about it that way. But it's a brain based illness and the brain is ill and it takes the brain a while to come back.

But in many cases the brain does recover. And you really see a person They come back to themselves, behaviors disappear. Is it the negative energy balance when your body is in that condition that is then triggering the change in brain chemistry? That's the theory. It's been very hard. There are so many great researchers out there.

They're researchers doing genetic studies because eating disorders are positively genetic, trying to figure out exactly which gene it is. They're trying to find out which neural pathways so that they can find medications to target eating disorders. There's so much great research being done out there and has been done out there for a long time and very tragically there's no answers.

There's a lot of questions and a lot of things being tested and a lot of things being researched, but to the best of my knowledge so many of these questions. haven't been answered yet of exactly how that works, right? Like exactly what is that negative energy balance? And exactly how does it trigger an eating disorder?

And then how is recovery triggered? And what's interesting is if you ask people who recover from an eating disorder, like where was that moment where you recovered? They have no idea. And that is actually reassuring to me that they just don't know. It just happens. You know, curating these valuable conversations is really about our shared passion for promoting mental wellness.

Behind the scenes, however, there are several platforms and systems that help us bring these episodes to you. If you found value in our conversations. and feel inspired to support, please consider making a donation, whether it's the price of coffee or wine or more, your contribution directly supports our ability to keep connecting, sharing, and growing with you.

Please visit our website at this way up podcast. com to support this community. We thank you. And we appreciate you.

It's concerning to me because let's say, you've got an alcoholic. Right. They can keep themselves recovered or away from alcohol by abstaining from it with an eating disorder. There could be conditions that drop you below that. weight or the calorie intake that you were talking about. Could that trigger them to go back into a disordered state?

Absolutely. Wow. There are maintaining factors for an eating disorder. It's like they're maintaining factors for any other illness. And basically what's really important Somebody who has an eating disorder is genetically predisposed to having an eating disorder. And there's nothing you can do about that.

It doesn't mean that they will have an eating disorder. We find in our community, a lot of parents have multiple children with eating disorders. Which makes total sense because they're genetic, right? So if you have multiple children with blue eyes, that means that you're always going to be vulnerable to developing an eating disorder.

So what's really important, is not to go into negative energy balance. And the way to do that is to create a buffer. Your target weight can't be exactly the weight, right? The ideal body weight. It has to be higher. Parents whose kids have recovered swear that it's because there's a buffer on top of their target weight, that their target weight is set higher than you would think it needs to be.

That's got to be hard to convince a person that has a eating disorder that their target weight has to be higher. It is. And to be very honest, I was told that my daughter needed to go above, you know, the weight where she was in order to recover. And I was kind of like, how can I ask her to do that?

Because, you know, she already got back to what the dietician considers to be a healthy weight. So how can I add 10 more pounds or 20 more pounds to that? And it was my mistake because I really should have. And there are parents who basically say. I'm your mother. I know what's best for you, and this is what we're going to do.

And what's actually interesting is the reverse of what you think happens, because the more their weight goes up, the less the anxiety is about the gaining weight. So you would think that it's actually harder, but at a certain point when the weight goes up, And that brain chemistry changes a little bit.

They're not as oppositional to gaining the weight. So, but yes, it is absolutely a very hard sell to someone with an eating disorder, but everything about this is hard. I mean, you are basically, you know, facing someone at the dinner table who was not the child that you gave birth to, not the child that you raised for all these years.

I mean, essentially this child's a stranger, an oppositional, hateful. you know, really stubborn stranger who is not going to eat what you give, who is going to curse at you, who's going to say horrible things to you, who's going to throw the plate of food, who's going to be violent. Kids who are the most docile, kind, sweet human beings become violent at the dinner table when they're forced to eat.

The eating disorder really is a monster that's like unleashed inside of them. Everything about caring for a child with an eating disorder or an adult with an eating disorder is so monumentally difficult and exhausting. Now disheartening and frustrating. So this is just one more layer on top of everything else.

Yeah, I can imagine. Can I jump back to when you were talking about the genetic predisposition? Can you explain to me, because I'm trying to imagine and connect what you said earlier about this being a disorder that starts with distorted thinking, negative thinking in your head, kind of you said it's like having a toxic boyfriend that's just criticizing you endlessly.

If that's also kind of what triggers the eating disorder, how is the genetic component related to that? Do you know? So it doesn't trigger the eating disorder. It's actually the result of an eating disorder, meaning once you develop an eating disorder, then these negative thoughts come. Oh, okay. And so basically the genetic component is Take cancer because it's the easiest analogy that I can think of, [00:30:00] right?

You have a genetic predisposition. Many times there's also environmental factors. If you have the genetic predisposition, but there are no environmental factors, chances are you're not going to have cancer. If you have the genetic predisposition and the environmental factors, then yes, you will develop cancer.

So there are people that carry genes for cancer that don't have cancer. They're just carriers. And I'm thinking it's the same thing with eating disorders. That you can have this predisposition. It doesn't mean you're going to have an eating disorder. What it does mean is that your weight can never drop below X.

X is variable for everyone. It's not the same number. Everybody has that red line where if they drop below, they go into this negative energy balance. So as a parent the most important thing is not to let your kid lose weight. And if there is a medical reason, it should be done under medical supervision, but you know, this is, it's weight loss.

I also want to mention that there are higher weight eating disorders. Anorexia, there's something called atypical anorexia. I really don't like the word atypical because it implies that someone in a larger body is atypical and that's just mean, right? But it's called atypical anorexia nervosa and basically there are people that are at higher body weights but their bodies are ravaged by anorexia even though their weight is not that low.

It's still the same effect on their heart. is still the same effect on their mental state. So, you know, people with bulimia, a lot of people with bulimia are not underweight at all. Binge eating disorder, same thing. So we like to think, I mean, I, I think there's a statistic that says only 6 percent of people with eating disorders are underweight.

So how would they evaluate then? How do they determine that? There are, there are basically tests, um, you know, evaluations, which are given by professionals, um, which ask a series of questions. About your relationship with food, you know, your thoughts about food, your thoughts about exercise. But another important thing is really that when you include parents in these conversations, you know, as a parent, what your kid's baseline is.

So, you know, when your kid's answering a questionnaire, whether they're answering truth or false. So that's why I think it's really important for parents to be involved in this diagnostic process because they bring historical, you know, truth basically to the picture. But most times, you know, these evaluations are pretty accurate, um, and at least getting a picture for who has an eating disorder.

So if only six percent of people with eating disorders are underweight. It would appear to me that there are a lot of hidden behaviors that parents may not be able to see that their child is doing. Like if, if the child has bulimia, you might not necessarily know that they're purging their food. Correct.

What are some signs that a parent should be looking for if the weight's not a factor and you don't, you're not seeing some of these behaviors that would trigger you to go to a doctor and say, I think there's something wrong. Attitude is really important. Attitude toward food. Do they suddenly change their diet?

Do they cut out entire food groups? Are they obsessive about what they're eating? Again, part of this is our normal culture. Nobody, no child or adolescent should be cutting out an entire food group. In order for them to grow and develop, they need to eat everything. There is a percentage, and I don't remember offhand what it is, of people who become vegetarian or vegan within a year of developing an eating disorder.

Because it's restrictive. You know, it's taking out an entire category of food and saying, no, I'm not going to eat that. But it's considered to be the norm to be vegan or to be vegetarian. Yeah, trendy. So any type of, exactly, so any type of dietary changes. Is a really good giveaway when your kid won't eat food that they've always eaten and always loved you go out for a family For pizza your kids not eating pizza you go out for ice cream your kids not eating ice cream, you know You go out for anything and the thing on the menu that your kid has always always ordered They absolutely refuse to they won't eat with you.

They won't go out with you. They withdraw socially. That's another one because Kids with eating disorders don't want to go places where there's food because, first of all, they're tempted, and they don't want to be tempted, and also they don't want anybody to be onto them. So, they don't want to go with family out to dinner, they don't want to go with their friends out to dinner because somebody's going to notice and comment on it.

So, social withdrawal, cutting out entire food groups. Exercise compulsion. That's so tricky. That's a big one. Exercise compulsion. It's, it's really hard because the problem is people are playing the behaviors. That's the thing. And I would be so excited to see that. That's the whole thing. And, and so that's why it's so complicated.

Right. And that's why eating disorders thrive. They thrive in this culture where thin is good. Thinner is better. And, you know, everybody's looking to clean eat and everyone's looking to exercise. Compulsively and go to the gym and the one thing I do want to mention also, especially for parents, is that eating disorders and males can look different than eating disorders and females.

Eating disorders in males, a lot of times, is building muscle mass. It's not about being smaller, it's about being bigger. And that is really confusing for parents. We're going through that in my family. Which is a huge trend. Yes. And that's the thing. It's the protein powder. Yes. We're counting grams of protein.

And it's like the crazy workouts. Yes. And so that is a warning sign. It doesn't mean that somebody has an eating disorder. Okay. But it means that that is, it could theoretically be a dangerous behavior. So Judy, what do we do as parents? You have to offset that with something. Meaning, okay, fine. You can have your protein powder.

You got to come out with us for ice cream. You have to still eat pizza. In other words, you have to come to some compromise. Yeah. If my, one of my kids came home and said, I decided to be vegetarian. And I'm going to have a strict workout routine to be honest. I would think that that was a positive. So if that by what you're saying is a shift in behavior and a shift in their attitude towards food and exercise, what would be good qualifying questions that I could ask?

or conversations I can integrate to help determine if it's in a healthy lane or is this something really to be noting and watching? So in the exercise I think you have to see if it's compensatory meaning is there this attitude of oh my god I ate a bagel for breakfast and now I have to go for a run.

That mentality is dangerous and it's not just for kids it's dangerous for adults too. Meaning using exercise to compensate for eating you're allowed to eat. And you have to basically let your kids know you're allowed to eat. It's healthy, it's positive, it's what keeps you alive, and I think a lot of kids feel like they're not entitled to eat because that's what society is telling them, and I think that's really dangerous.

I think you have to basically encourage the eating, and if the exercise is compulsory, Then you have to intervene and you have to say, okay, you can exercise for 45 minutes, three times a week, and no more. You will be timed, you will be monitored. More than that is not healthy because the problem is everyone thinks if exercise is healthy, more exercises, more healthy, and that is really not true.

So I think it's really also just keeping an eye on your kids. I think, you know, we just assume everything is okay. And that's a perfectly natural assumption, but it's just important to know where your kids are, and what are they doing, and what are they eating, and how much are they exercising, and just to keep an eye on it, and also you have the right as a parent to say, this behavior is dangerous, it's going to lead you to a bad place, you know, we have to make adjustments, and if it means going to a dietician, who can basically balance out the protein obsession with something else.

But it has to be a dietitian who is aware of eating disorders. Every dietitian is not equal. There are some dietitians which will just encourage disordered eating behaviors. There are some dietitians who will recognize them and try to stop them. So it's really hard. This is a society which, it's really hard to differentiate.

I really feel your pain in this. But I really have to say that eating disorders, they go from like zero to like, you know, a million and you're, you're there. Well, it's so complex because you've got society telling you, you need to eat healthy. You need to exercise. You need to look this way. And you've got marketers out there trying to sell all sorts of healthcare products and they're targeting younger and younger and younger kids.

And then on top of it, not everybody has the gene for an eating disorder, but that gene is hidden. So you don't know, okay, maybe your son or daughter could exercise a ton and, and do all of these, you know, Healthy things, but you don't know at what point it turns to be unhealthy or if you have the gene that's going to cause you To really take this into a slippery slope.

That is totally correct It's terrifying. That is totally correct. It is terrifying And as I said, eating disorders just slip under the radar and there are a lot of parents who only recognize them when they're very advanced because they look healthy, they look normal. And they're doing the right things.

That's the thing. It looks like behavior that you would applaud, that you would embrace, that you would encourage. So that's part of why they're able really to develop is because it's encouraged by society and it's also what makes it so much harder to recover from an eating disorder. Because you're actually going against the norm.

You're eating foods that everybody's looking at you like, oh my god, I can't believe you're eating that. And so it makes recovery even harder to have to recover in this type of society [00:40:00] where weight loss is revered. At any cost, you know, you do it no matter what the cost is. So, you know, parents just really have to, they also have to model behavior.

As a parent, you have to model eating all foods. You have to model not exercising as a punishment for what you ate. You have to be careful how you speak about yourself and others in terms of your own bodies. Kids learn from their parents, and if a parent is always disparaging their own body, then that's what the kid inevitably is going to think is normal.

So, the modeling of behavior is really important, but I always tell parents, if a lot of it is really intuition, I mean, really, you know, Emie, to answer the question, A lot of it is intuition. Sometimes as a parent, you know, you'll watch your kid exercise. You'll see how focused they are. You'll see how obsessive they are.

You'll see how other things fall to the wayside. You know, they'll give up activities that they love. They'll give up seeing friends because it'll interfere with their exercise routine or it won't be the right foods and you know, it's not going to work for them. When you see, you know, these behaviors interfering with their lives.

I think intuitively most parents get this inkling of I think there's something wrong here. And my experience is that when parents have that intuition, they are usually right. Parents are rarely wrong, but intuition is so useful in helping us see what's wrong with our kids. Yeah, I think that comment and what you said before will be really empowering to our listeners.

And the comment before was about how you wished you wouldn't have disrupted that conversation where you were put on the other side of the door listening to your daughter cry for 45 minutes. And those are the moments where we need our community. We need you and each other. So we kind of lift each other up and say, no, yeah, we're, we're validating.

You go with your instinct, go with your parents, um, hunch on what is right. And we had another guest, Andrea, who called, um, He made this funny comment about being an ask hole, an ask hole, and just, um, you know, because you don't want to be the rude, intrusive parent, and that's not what we're saying, but to be true to your instincts, and be curious, and ask questions, and, and question, not to say advocating for questioning authority, but yeah, maybe asking why, or um, I don't know.

And just not being intimidated. Intimidate. Yeah. Yeah. And not being intimidating, but yeah, finding that balance. So where you can affect positive change for your kiddo. And that's something that I think no matter what illness your child has, whether it's a physical illness or a mental illness, as parents, we have to advocate for them and you need to be empowered to do that because it's very daunting to be a parent with no credentials.

and to feel and to know in your gut that something is wrong and to face a doctor or a dietitian or any other medical professional who tells you, you know, everything is fine, it's just in your imagination. And we really need to be empowered and part of the empowerment that we give at FEAST is education.

Once you understand eating disorders, once you understand what they are and how they're treated, I think it really empowers you to be able to step up and to tell your child's provider when you think That it's the wrong path. And again, there are ways to do it, which are not, we don't want to be threatening, we don't want to be intimidating, you know, we're just parents and there's ways to let your concern show through and to tell them, look, I'm just coming at this as a parent.

You have to understand where I'm coming from. Right. And that empowerment is really critical. To your point also is peer support. I mean, FEAST provides a ton of peer support and that's where I think the empowerment also comes from. Yeah, that's huge. Is you put out a situation on a forum and you have 25 parents answering you within 10 minutes to say like, oh, I had the same problem.

I know that there were times during my daughter's illness that I felt like I was living in a parallel universe. All my friends were out living their lives, and they were going to PCA meetings, and they were going to parties, and they were having fun. And I was stuck with this sick kid, and really glued to her 24 7, because you have to feed somebody three meals and three snacks a day.

They're not leaving your house. Ever. So, I felt like I was living in this parallel universe where nobody understood me. Yeah, what was your mental health like? I'm actually incredibly, incredibly lucky. To be a resilient person. And I say that really in all honesty. I had a lot of adversity as a kid. My father died when I was young.

My mother died when I was young. And I think maybe that adversity really worked to my benefit as an adult because it did make me somewhat resilient. I also thankfully am not prone to depression, which is a real huge blessing. Really it is. Like, you know, I certainly get upset about situations. But I don't stay there, meaning I don't wallow.

I don't get stuck and that's an amazing thing. So that's my personal experience. And I'm so grateful because I don't know that I could have. live through the death of my child if I wasn't this type of person and if I didn't make a conscious decision to go on living and to take something of this experience and use it to help other people, but I think that each parent is different.

How does having a child with an eating disorder, you said it's a family treatment, How does it affect the rest of the family? I want to first of all just be pedantic about family based treatment is different than family treatment. Some providers are like, oh, we provide family treatment. Family based treatment is a very specific modality of treatment that has evidence that shows that it works.

You know, marriages have disintegrated because of eating disorders. You don't agree on the treatment. It is very hard to sit meal after meal with your kid with an eating disorder. It's very hard to carry that stress. It spills over to everything else in your life unless you learn how to manage it. Yeah, because like every meal is like a therapy session too, I would imagine.

Every meal is really hell. It's just like you get through it and then it's time for the next one because it takes forever, right? They don't eat in 20 minutes. It could take them up to an hour or two hours and you don't leave the table until the food is done. So you're literally spending all day every day at the table and I was very, very lucky that I have an incredibly supportive husband.

Who really was on the same page as I was. She was incredibly involved. And I would be at home with my daughter. There was a period of time, it was months. That she went to school about an hour away from where we live She would go on the but I would feed her breakfast in the morning Make sure she ate she would go on the bus to school.

I would show up for mid morning snack She would come out to the car and eat it with me And then I would go find somewhere to work that had wireless I was an event planner at the time And I would work for a few hours come back to school Make sure she ate lunch with me in the car and then I would rush home to pick up my kid from elementary school And she went back to school and for months, for months, every single day, five days a week.

Wow. I was there because she couldn't go to school if she wasn't going to eat and she wasn't going to eat in front of her friends in a classroom. So it requires a tremendous investment. I would come home at the end of the day. I was tired. My husband would literally walk in the door from work, put down his briefcase, walk in the kitchen and say, okay, you go upstairs now.

I've got this. Oh, that's amazing. So I always felt like we tag teamed. Some families, both parents educate themselves, both parents understand what has to be done. They invest in treatment and they really work together as a team to get their kid to recover. But a lot of times in other families it doesn't work that way.

It can be a spouse or a co parent and they're just not on the same page. It's really hard to deal with someone with an eating disorder. It's much easier to bury your head in the sand. It's much easier to say, Oh, you know, she's 16 years old. We shouldn't be supervising her meals. We shouldn't be pulling back independence.

You know, this is wrong. And a lot of times you have these parents that one parent knows what to do and the other parent undermines. We're so glad you brought this up because Andrea and I talk about that often, the dynamics between couples and, you know, sometimes you divide tasks, but you speak so well as to how it benefits you when you're both equal, you're both involved, going to the appointments.

And it benefits the person who you're caring for. Yes. It doesn't just benefit us, it benefits the whole family. Siblings are extremely affected by eating disorders. My kids were in a situation. Where they watched their sister throw up and they didn't know whether to tell me or not. They knew that it was dangerous, but they don't want to violate, you know, the trust of their sister.

Yeah. There was one specific night where my daughter was home from the hospital overnight. She vomited in the sink. It got backed up. She went to one of her sisters and said, can you help me? It was disgusting, but her sister helped her. Never said a word to us. you know, sisters, siblings in general, you know, they end up being the holders of secrets and the secrets torment them because the secrets basically are secrets of behavior, which is dangerous.

And they're constantly having to weigh, you know, do I snitch on my sibling? So I hold their confidence. Is it safe for me to hold their confidence? Sometimes it's around self harm. They see their siblings self harming, and they don't know what to do. Now, do you tell mom and dad? Do you not tell mom and dad?

So, siblings often get caught in the middle. And also, our home became a battleground. I mean, meals were a battleground. Nobody wanted to sit and eat together. Because there was, really, there was kicking and screaming and, and every horrible thing that you could possibly imagine. And, I mean, I had an eight year old.

We couldn't have friends over. I would beg my daughter, whenever he wanted to have a play date, I'd beg her. I'd be like, please, please, please don't yell. They're just eight year old boys, please don't yell. [00:50:00] And normally she would never exhibit this behavior. But the eating disorder made her. And so it's a horrible thing when you can never have your friends over.

You know, my kids wanted to be out of the house. And I didn't blame them, I wanted to be out of the house. So you have to try, you know, it was really nice. One of my daughters wrote me a letter when she was in high school that said that one of the things that she appreciates is that I was always there for her.

Like no matter what was going on with my other daughter, I was always there for her. And that was so special to me because it was so hard. It was so hard, you know, you have to try to divide yourself into a million pieces and you have to also try to keep your marriage alive and you have to try to keep stability in the home and relationships with people that you care about and there's just so much going on and you have to balance it all and it's just really, really difficult.

So eating disorders affect every person in the family. They don't only affect the person that has it. And it's really important for everyone to get the help that they need. Absolutely. And, and the support that they need. Um, one of the things that we do at FEAST is we have a sibling group, a sibling support group, which is actually peer led.

It's led by siblings of people with eating disorders. They are amazing. And siblings are given a space once a week to talk about their experiences. and how difficult it is and what they're feeling and it's such an amazing thing. That's incredible because a sibling does, like you just laid it all out, a sibling does have a different perspective.

That's an amazing resource. They do and it's an amazing resource. We run it with an organization called ANED and it's an amazing resource because siblings are never really given space. And even when they are, it's not peer led. There's something about having a group that's led by a peer, somebody who really understands, somebody who can contribute their own experience to the conversation, who really can empathize, who really gets it.

I think that's so incredibly valuable. So that's a resource. It's a new resource that we started last year. And I think it's really something that I hope it grows, because I know that it's so necessary. That's phenomenal. So before we wrap up, I want to clarify, FEAST is available globally. So FEAST, basically the organization, um, we have a website, it's feast ed.

org, but you can just look up FEAST eating disorders and you'll get to us. We are a global organization. We currently serve over 8, 000 families spread all over the world. And the way that we help families basically is kind of two pronged. We provide support. We provide online support groups. I mentioned the sibling group.

We also have an online support group for caregivers that meets twice a week. Um, you know, they're different groups. But basically, so caregivers can get this online support in a group of their peers led by their peers. We have a parent support team. It's basically a team that answers emails 24 7, 365 days a year.

If you need something, if you have a question, if you're looking for a resource, you email us and one of our amazing parent support volunteers is going to email you back and give you what you need. We have these parent forums. We have, it's called Around the Dinner Table, which is what I call the old school forum.

That's the forum that helped me. Many, many years ago when my daughter was diagnosed and I didn't know where to turn, we've also developed a Facebook group, which is just, it's faster paced. It's a different type of a group, but it's an amazing group. Over 6, 000 parents are involved in our Facebook group.

Wow. And it's an amazing place to get information and resources and also to connect with people in your area. Because we're global, if you want to know where's eating disorder treatment in Connecticut that's evidence based, Somebody's probably going to answer you because they live two blocks down.

You've just never met them before, so it's a great way to network. And we also have a group called Men of Feast. Men of Feast is really special. It's for dads and male caregivers. And it's led, again, peer led by one of our amazing volunteers. And it's just this group of dads that really talk about the specific challenges that they experience.

As men, it is a different experience for them as men, and they need different type of support, and we give it to them. And then we have all these educational resources. We have a program called Feast 30 Days, which is 30 different topics. All relating to eating disorders. You get one email a day concentrated on that one topic, you know, with resources.

So, you know, eating disorders are not a choice. The neurobiology of eating disorders, the genetic of eating disorders. What do I do with the siblings of the person with the eating disorder? Relapse. How do I prevent relapse? Um, self harm, suicidality, recover. All the topics, you know, again. In, in easily digestible chunks so that parents within 30 days can really get up to speed on how to treat their child's eating disorder.

We're developing a caregiver skills program, which I'm really excited about because I feel like you can tell someone what they have to do, but if you don't explain how to do it, it's almost useless. So this is a video based program that's going to teach caregivers a lot of different skills that they really need to care for their loved one and for themselves because as caregivers, we have to know how to care for ourselves as well.

Oh, 100%. We also have, um, monthly webinars on topics that are of interest to the parent community. We have an upcoming event called Feast of Knowledge. It's a one day conference just for parents and caregivers, really geared toward them. And the people that we use to disseminate the educational components of Feast are all leading experts on eating disorders.

And in a nutshell, that's pretty much what we do. And we do it all for free. So comprehensive. It's everything. It's, yes. So well thought out. It's bigger than a nutshell. It doesn't fit in a nutshell. I mean, we also have some translated resources because not everyone speaks English. So on our website, we have some of our resources are in other languages.

That's one of our big plans for the future is to translate more resources so that people can access them in a language that they're comfortable with. I want to give every parent everywhere in the world, equal chance to have their kid recover. And the way to do that basically is through this access to all of our resources.

So, the resources that we have that require or that ask for payment, it's because we need the money to run FEAST and anyone who can't afford it just gets a scholarship. We don't, we don't ask any questions beyond, you know, just give me a one sentence description of why you need a scholarship. Um, you know, because I can't make ends meet, because I'm a single mom.

Nobody's asking anything more than that. But, the idea is that every parent deserves to give their kid the best chance of recovery. And, I know that what we do saves lives. I really do. And I'm so sad that more and more parents each year need us. We give parents a springboard from which they can then find the help they need for their kid.

Incredible. Wow. Judy, you have turned your learnings and your tragedy into. a beautiful thing for the world. I mean, wow, just very inspirational and amazing. Yeah. Can I read this quote that is kind of along those lines? We, uh, Andrea and I posted this on our Instagram and this just seems like perfect tribute to you.

The quote is by a woman named Stephanie sparkles. And she said, I love when people that have been through hell walk out of the flames, carrying buckets of water for those still consumed by the fire. That's very beautiful. I really, I've never heard that quote before. I love it. And I also think that's, that's you.

It is. It's me, but it's also the entire organization that I run. You know, I liken it really to somebody who's climbed this mountain and it's rocky and it's really hard and they get to the top and instead of just walking down the other side, they turn around and they offer their hands to the person coming up behind them.

And that really is what we do. And that's the visual that I carry in my head. I love that. Who we are and what we do is like that visual of like helping others. I don't want any other family to have to suffer what we suffered. And so I work every day to make sure that parents, kids, families have the best chance of recovery.

Yeah. Thank you so much for sharing your story. Well, thank you for the opportunity. I really appreciate it. You are truly an inspiration and a beautiful light in this world. And thank you for being here. Thank you.

Thank you for tuning in to today's conversation. To join our community and access more valuable resources, please visit our website at thiswayuppodcast. com. Don't forget to hit that subscribe button and share this. with a friend and to stay connected, follow us on Facebook and Instagram at listen to this way up.