Episode 20 - Generational Trauma
Johanna Kandel grew up the daughter of parents who survived the Holocaust and with roots in deep poverty - traumas that continued to shape her life even though she was born long after they occurred. We explore how her body image issues and eating disorder unfolded and why it took years to receive a diagnosis and find treatment. We also discuss helpful steps to getting a diagnosis if a medical provider is not clued in so that you can access recovery.
Ellie: [00:00:00] When I first sat down with today's storyteller, she told me that to know my story is to know my heritage. It's so easy to forget that the ripple effects of trauma reach beyond our present moments. They affect not only the immediate future but also generations who follow. Today, We get to talk with Johanna Kandel.
Johanna: [00:00:30] Hi, there. My name is Johanna Kandel. I am the CEO and founder of the Alliance for Eating Disorders Awareness.
Ellie: We're going to see how the interplay of genetics and the life experience of your parents play into the development of an eating disorder and what you can do to change the tide. We'll also cover some helpful steps to getting a diagnosis, even if your regular physician is not familiar with eating disorders. You're listening to Mental Note podcast. I'm Ellie Pike [00:01:00].
Johanna: Whenever I am asked to share my story, I always bring it back to my parents, because so much of what they experienced in their life had such significance on my life. My father is actually a Holocaust survivor. He was born and raised in Paris. He was in a Jewish ghetto and at the age of three, when the Germans came into [00:01:30] the ghetto to round up the Jews to take them to the concentration camps, my grandmother, my father and my uncle narrowly slipped away and were able to go into hiding. My father was separated from his mom and for the next six years, actually lived on a farm in the outskirts of Paris and was really left to his own accord to take care of himself truthfully.
Ellie: Johanna's father wouldn't see his family again until after world war II had passed. [00:02:00] When he did finally see them, there weren't many left.
Johanna: His father, and pretty much everybody besides his mother and his brother were killed in Auschwitz. When you turn it over to my mom, she was also born and raised in Europe, but she was born into a very, very poor family. There were about 13 of them that lived in a studio apartment and they didn't even have running water. [00:02:30] Eating once a day was actually a really, really good day.
Ellie: The aftermath of these traumas affected Johanna in very tangible ways. Would you say it, it caused you to be more approval seeking and seeking affection specifically?
Johanna: Oh my goodness, without a doubt. His trauma, what he experienced absolutely shaped my growth, my childhood, my lifetime experience. I know personally I spent so much time trying to be good enough [00:03:00] so that I would hear from my dad that he loved me or that he was proud of me, which wasn't anything that he was capable of.
Ellie: How did that affect who you actually became personality-wise and what your temperament really was longterm?
Johanna: Sure. We know that so much of personality and temperament can be genetic. My dad has always struggled with OCD, with perfectionism. My dad has one sister and she struggled with anorexia. My mother had three sisters [00:03:30] and three brothers and two out of our three sisters, struggled with bulimia nervosa and anorexia nervosa. We all know that genetics are not the only thing that contribute to the development of eating disorders. It's the temperament, which I had, the black or white, all or nothing, that people pleaser.
The existence of comorbid psychiatric illness. I had anxiety, I've also struggled with depression. The last thing, which was really the environment trigger pole for me was when I started [00:04:00] walking, I walked pigeon-toed and my parents thought it would be a really good thing to put me in ballet. It would turn my feet out. It would give me poise and much to their chagrin, I absolutely fell in love with ballet.
By the time I was seven, I was dancing four days a week. By the time I was 10, I was spending my summers in New York at prestigious academies, like School of American Ballet. [00:04:30] My world very quickly shifted to being the best ballet dancer I can be. You know the saying the path to hell is filled with good intentions. That is exactly my journey summarized. I remember going home and looking at my mom and saying, "Mom, I'm going to go on a healthy food diet." That's really what it was, that I was going to eat healthier. Fruits and vegetables.
My mom having this [00:05:00] child who hated vegetables and hated fruit actually said, "Hallelujah, my kid's going to eat these vegetables." There was a lot of pressure in my ballet class of you need to lose weight, you need to lose weight. About two months later when we auditioned, unfortunately, I was the only one out of the 15 girls that didn't get cast. They pulled me aside and they said, "Johanna, the reason why you didn't get picked is not because you're not a great dancer, on the contrary, [00:05:30] it's just that you look so young." I have to tell you in that moment was the first time that I ever experienced that nasty game of telephone, that so many people with eating disorders experience.
Ellie: What do you mean by that?
Johanna: So often somebody will say something and what the eating disorder does, is it twists it almost for their own agenda. Someone can say, "Oh, you look so healthy," and what I probably [00:06:00] would have heard when I was struggling was, "Oh, they called me fat."
Ellie: To summarize, to piece it together, tell me if I'm correct. You had genetics going against you. You weren't even raised necessarily around your mom's sisters that had eating disorders. It wasn't that nurture piece, but the nature piece there, and then you had your own tendencies towards perfectionism, black and white thinking. Then you had the cultural piece of your dance teacher saying you should lose weight. [00:06:30] I think that is so important to point out that never was this a choice. It just evolved into the way that your brain worked. Is that correct?
Johanna: Right on. It's so important because people don't realize the whole perfect storm that that comes together. I never chose this like I would have never chosen to struggle with cancer or any other physical illness, but I think that there's this misnomer out there that when it comes to mental illness because it's [00:07:00] above the neck, we should be able to fix it and we should be able to avoid it. That couldn't be further from the truth. I also think that the feedback that I got surrounding my appearance at the beginning was a big, a big propeller. Honestly, it came down to, it became so safe and it became so second nature and so habitual that I really couldn't even imagine my life without it.
Ellie: In the process of the eating disorder being in control. When you look back, [00:07:30] did you notice like actually not being in control of your life or your relationships being affected or your performance in any way?
Johanna: I think of how many relationships that I no longer have because of my eating disorder. I think of how many times I put my health, my wellbeing, my mental health in jeopardy because of my eating disorder. If I would have been in control, I would have never made those choices.
Ellie: I think that's a really important distinction. Can you [00:08:00] tell me a little bit more about in the midst of this it's functioning for you, it's helping you in some way coping with your anxiety, functioning in life, but also in the grand scheme, it was, it was maladaptive. It was not helpful in the grand scheme. In the meantime, did anyone know that you had an eating disorder?
Johanna: My eating disorder started the summer between my sixth and seventh-grade year of school. Truthfully, for a good solid two years, everybody was very much in the very complimentary stage. "Oh, you [00:08:30] look great. Have you lost weight?" Of course, my eating disorder fed right into that excuse, that terminology but there was a shift right around ninth grade where people's tones went from, "Oh, you look great. Have you lost weight? How did you do it?" To, "Oh my God. Are you okay? Are you feeling okay?"
It was interesting because the only two people that really didn't say much at all about my [00:09:00] weight and my eating disorder are my parents. I was always very careful to leave the door closed when I was changing but at that point, I'd become so foggy-brained and honestly, so exhausted from struggling for so long that I left the door open and I was changing. Just at that moment, my mom happened to walk by and she looked in and I think for the first time in about five and a half years, she saw what I looked like without clothes on. [00:09:30]
She pushed the door open and started screaming and was shaking me not badly, but just saying, "Oh my God, you're going to die. You're going to die." In that moment, I remember having this a little bit of relief that she knew and at the same time, so much more fear that she was going to take it away.
Ellie: She was shocked. She had no idea. It had [00:00:00] developed to this point.
Johanna: Exactly right. The next morning she took me to the doctor and he put me on the scale and looked at my mom and said, "She's very, very thin. However, just go home, feed her some good French food and she will be fine."
Ellie: Do you remember what you felt at that moment?
Johanna: So much relief that I was going under the radar. Then truthfully I felt like, "You see, there's nothing really wrong. [00:10:30] I'm not sick enough." Truth be told, I knew what eating disorders were at the time. I knew very well I was struggling with anorexia.
Ellie: You get away with it essentially and your doctor lets you go. What happened right after that?
Johanna: Three days later, I ended up in the ER and they moved me to go to the cardiac care unit because my heart rate was so low they didn't think that my heart was going to make it through the night, unfortunately.
Ellie: Which [00:11:00] is a side effect of eating disorder, long-term?
Johanna: Absolutely. The thing that I have to tell you, just makes everything so much more like or I should say has fueled my work so much at the Alliance, is nobody in the entire time I was in the hospital said anything about anorexia nervosa. It would have been prime time for intervention and actually treatment. I could have actually had access to care but [00:11:30] I left. They stabilized my heart and their only concern was they diagnosed me with malnutrition and with the fact that I was 17 and a half years old, and I had never menstruated. Their solution was "Well, we need to get her menstruating."They decided to "Fix me with medicine." They gave me hormones and they also gave me steroids.
Ellie: Taking these meds caused Johanna to gain weight which only propelled her deeper into her disordered eating.
Johanna: [00:12:00] At that point was when I shifted from restricting to binging and purging because I thought "You know what, heck, if my body is going to be doing this anyways, I might as well start engaging in these behaviors."
My mom came up to see my first performance and at that point, she was starting to mill around the word eating disorders. She had talked to my doctor [00:12:30] and he finally acknowledged that yes, I probably had an eating disorder. Between my doctor and my family, they decided that the best thing that I could do for my "recovery" was to stop dancing.
For me, ballet was my world. It was my heart, it was my soul. It was why I woke up every morning. It was the only thing I ever wanted to do. [00:13:00] It was, number one is, it was the biggest loss I'd ever felt in my life but more than anything I realized that I had lived my life for the last definitely six years, at that point, almost seven having two identities. Johanna the dancer, and then Johanna the eating disorder person. When you took out the dancer identity, [00:13:30] all I was left with was my eating disorder.
Ellie: Do you think that that was directly correlated with not dancing anymore and not having to hold a certain shape and allowing yourself to eat again?
Johanna: Without a doubt, yes.
Ellie: Then it fell out of control but then it also had a side effect of numbing all your feelings.
Johanna: Oh, my goodness, absolutely. Then I remember setting myself up [00:14:00] all the time also at the same time. Meaning, I would engage in these behaviors where I know factually through the work that I do now is the number one behavior that leads to binging is restricting. I would have these cycles of restricting and binging and restricting and binging. I remember thinking, "Who am I?" Because for so long I was Johanna the dancer. Going back to that identity of the eating disorder, I remember thinking "The only thing I know about just as much as I know about [00:14:30] ballet is eating disorders."
It was in that moment that I really had this, I don't want to say epiphany, but this moment of discovery where I was like "If I ever get better, what I really want to do is help other people." Because I struggled for so long in silence. I struggled with isolation and loneliness and feeling like I was the exception to the rule. More than anything, not feeling that I deserved anything. I'd feel like I didn't even deserve to take [00:15:00] up space."
Truthfully, I was sick and tired of being sick and tired. I had struggled for 10 years in the hell that was my disease. I was tired of not showing up even though I was showing up. I was tired of not laughing or building these walls that were so tall because I was so afraid of letting anybody in and yet looking around and seeing how isolated I was. I called my parents and I said, "Mom, Dad, I need help." That was when my journey [00:15:30] to recovery started.
Ellie: Johanna's desire to recover was so strong that it took root despite discouragement from her first treatment team that had no idea what they were doing.
Johanna: The first therapist that I went to go see for help for my eating disorder was actually not an eating disorder specialist. She was very lovely. I shared with her some of my story and she looked at me and she said, "Johanna, I'm really proud of you for being here [00:16:00] but I need you to know that eating disorders are very similar to substance use, that once you're an alcoholic you're always an alcoholic and so once you have your eating disorder you'll always have your eating disorder."
I have to tell you, that absolutely was probably the worst thing she could have ever said to me because I remember looking at her and saying "Well, then why am I here?" What I needed her to say truthfully, was it gets better. I don't think I was prepared [00:16:30] to hear the word recovered but I needed someone to say, "It gets better." I left her office and it just gave me carte blanche to keep on doing all this stuff I was doing. Act out in all the shenanigans I was doing.
It wasn't until several weeks later that I once again had this moment of almost like peeking to see if recovery was something that I could try. I found, finally, a therapist that [00:17:00] had knowledge on eating disorders. Of course, that's where the actual work started.
Ellie: To talk about that actual work, we tracked down Dr. Joann Hendelman. A clinical director with over 45 years experience in the field.
Dr. Joann Hendelman: I am Dr. Joann Hendelman. I am the clinical director of The Alliance for Eating Disorders Awareness and The Alliance for Eating Disorders Awareness psychological services.
Ellie: [00:17:30] She also happened to be the chief psychologist at the hospital where Johanna was initially admitted but because of misdiagnosis, they never met until years later. Through her work, she is keenly aware of why it can be so difficult to get an eating disorder diagnosis in the first place.
Dr. Joann: Wow, when I started out in 1973, yes, that long ago, it took me about a week to read everything that was [00:18:00] out there about eating disorders. It took many years for more information to start coming out. Till now, there's just no way I can keep up.
Ellie: You worked at the hospital where Johanna went in when she needed help. She was not diagnosed with an eating disorder at the time. You might not have ever interacted with her but just what's your take on that where people went so undiagnosed because there was lack of education, lack of awareness?
Dr. Joann: The sad part is that [00:18:30] the lack of awareness continues till today. Years ago when Johanna first went to the hospital, at the time, I was the department chair for psychology and yet, the information out there was very limited and unfortunately, that's true in a lot of places today. Especially in hospitals where they are not specializing in eating disorders [00:19:00] so they're not really aware of what to pick up. They're not really aware of what signs and symptoms they want to hear not only from the patient but even the patient's family.
Ellie: If you were to educate our audience or even professionals in the field, what are some of the warning signs that you would ask them to look out for?
Dr. Joann: There are things that are subtle, there are things that are significant. What's interesting is that [00:19:30] the person with an eating disorder is unlikely to come in to the doctor by choice for their eating disorder. They basically come to the doctor because they have stomachaches, they have constipation, headaches, loss of energy, difficulty keeping up with their exercise regimen that they have always maintained, sleep issues, or dry skin. Those are the kinds of things that are going to [00:20:00] come into the doctor for. Their eating disorder in their mind is their only way of maintaining control over their bodies.
Ellie: I think that you really do bring up a great point. No one's really going to come into the doctor saying, "Hey, I'm doing all of these things, would you please diagnose me with an eating disorder?" It's always going to go underlying, an eating disorder is always telling the person to protect it. It's a coping mechanism, it's a way of survival in essence. I think you [00:20:30] speak a lot to just how we have to read between the lines as medical professionals, and how we also have a lot of work to do in this field to raise awareness.
Dr. Joann: Yes. When you think of the fact that only 19% of medical centers actually have an elective course about eating disorders, and then they may not even get the information in their residencies. [00:21:00] We did a presentation for first-year residents from a local medical school, we asked them about the information that they received about eating disorders. Not only did they not get very much, but it was all out of date.
Dr. Joann: It was frightening.
Ellie: That is extremely concerning and I imagine that that breeds a feeling of fear of if there's this whole topic of eating disorders that someone doesn't know how to treat, [00:21:30] I imagine there's this fear in being able to even diagnose it correctly or knowing how to treat it if you did diagnose it.
Dr. Joann: Unfortunately, we have a real problem with many doctors when we start talking about, for example, binge eating disorder that they still have the belief system that shame is the way to change the patient’s behavior. They're not diagnosing binge eating disorder what they're doing and saying, "You're too fat, and therefore, you need to lose weight [00:22:00] because medically it's not okay," and the utilization of shame is frightening.
Ellie: I think the other side of it too you could probably speak to someone who is exercising and wanting to eat, "Healthier, really clean" you could probably have a lot of medical providers really praising them for their discipline, for trying to be healthy and not really recognize that they're urging on this demon of an eating disorder. [00:22:30] The next topic I wanted to ask you about is about using the traits of an eating disorder. We've talked about with Johanna like perfectionism, high achieving people-pleasing tendencies, and using those traits for good instead of destruction. I’m curious just what your take is on that and also how you've seen that in Johanna's life?
Dr. Joann: When we have patients who have obsessive-compulsive personality, we actually can help them to [00:23:00] utilize that for their own good, for their health to be able to maintain their lives in a fashion that is comfortable for them without it taking over their lives, without it getting in the way of life and that's really where it comes down to it. When we think about orthorexia nervosa, and the [00:23:30] obsessive-compulsive nature of eating clean and eating only certain foods, perhaps, being a raw foodie.
Whatever it is, yes, it's fine for us to have a plan in terms of maintaining the health of our body, we sort of call it body supportive instead of healthy because healthy becomes obsessive-compulsive whereas body supportive allows you to be flexible with your body, [00:24:00] allows you to go out of the boundaries on occasion, and that's okay.
With Johanna, the obsessive-compulsive got in her way in terms of her dance to the point where she wanted to be the perfect ballerina, to be incredibly successful, that transferred over to be the perfect person with anorexia nervosa.
Now, [00:24:30] Johanna is able to utilize her need for being healthy and taking care of things in a way of getting things done without abusing herself, being nasty to herself, being self-shaming if she can't get something done that needs to get done.
Ellie: Using some of those perfectionistic tendencies to get something done, work [00:25:00] for cause, but then at the same time learning flexibility and balance with some of those tendencies and traits.
Dr. Joann: Exactly.
Ellie: Dr. Hendelman was right. The amazing thing about Johanna is that she took the personality traits that fueled her eating disorder and turn them against the disease.
Johanna: Recovery and this is the truth is the hardest thing I ever did. [00:25:30] It's messy, it's painful and at the same time I can tell you, it is the best thing that I ever did. I really approached my recovery, the same way that I approached my eating disorder. Black or white, all or nothing. I thought that when I chose to recover, I would recover. That I wouldn't be able to sit in front of a plate of food and be okay, that the constant body checking or the constant obsessive and compulsive thoughts would just go away.
Clearly, that is absolutely [00:26:00] not what happened because although my perception of what recovery was, was a linear line, the truth of the matter, the journey to recovery is messy. It's one step forward, three steps back, two steps forward, four steps back.
Ellie: To allow yourself to trip and fall I bet was really challenging for you especially as an achiever, a perfectionist, someone who's able to do things at her own well. What made you keep choosing recovery even when it [00:26:30] sucked?
Johanna: At times, it was my family, at times it was my desire to help others. Whatever inspiration I could pull from because truthfully at the beginning, it wasn't for me, and it wasn't about me, it was for so many other people. Recovery happens in those moments where you pick yourself up, you dust yourself off and you keep on moving forward. The beauty of it is you're not meant to do this alone.
Just how like someone that has diabetes isn't expected [00:27:00] to will their blood sugars to regulate, someone with an eating disorder is not expected to fix this on their own. You are not a failure for not being able to recover on your own, even though the garbage that our eating disorder tells us fits right into that.
Ellie: Will you tell us a little bit about The Alliance for Eating Disorders?
Johanna: As I started to recover, what I realized was what made my heart sing was to be able to talk to that seventh grade me who felt like I didn't deserve, or [00:27:30] I didn't deserve to take up space. I called up my parents and I said, "Mom, Dad, I want to start a nonprofit organization," and I had some nonprofit experience because I worked for another eating disorder nonprofit at the time, and they basically said, "Well, you got into grad school, you got into some PhD programs," and I said, "Let me defer for a year and see if I can make this work."
I actually took out a student loan my [00:28:00] last semester of college, I moved back home to South Florida, and I filed the paperwork to start The Alliance for Eating Disorders Awareness in October of 2000. At the beginning, I worked three jobs to keep the organization going, but this October will be 18 years that were in existence. We do outreach education, early intervention, and advocacy for all eating disorders. We do everything from connecting people to treatment, [00:28:30] to going into schools and educating people about eating disorders.
Our top three pillars at The Alliance really stemmed from the experiences I had in my struggle. Meaning, first and foremost, we do a lot of work around the country educating primary care providers on how to identify, assess and refer people to treatment. Then the other things that we do here is we offer free clinician-led weekly support groups. We have a bunch of them in South Florida but towards the end of this year [00:29:00] we're expanding to eight cities across the country.
Ellie: That's amazing.
Johanna: We also help people find treatment, all levels of care from outpatient to acute medical stabilization. Last, we do a whole lot of advocacy around eating disorders so the one thing that has really shifted my life was the first time that I went to Washington DC about sixteen and a half years ago, and I was sitting in front of my Congressman, and I had no idea why I was there. I showed up, I was like, "I think it's [00:29:30] a good idea to go talk to your member of Congress. Sure." He looked at me and he said, "Why are you here?" I'm like, "I don't know." He said, "Well, tell me about yourself."
I started sharing my story about my struggle and my recovery and the fact that 30 million Americans will experience an eating disorder and that they don't discriminate and that only one in three people with eating disorders gets access to care. The most unbelievable thing happened is he sat there and he [00:30:00] listened to me and then he started to ask questions. He sent follow-up emails, and became involved. That was really the turning point for me where I realized that every voice matters, and people with eating disorders deserve to be seen and to be heard.
Ellie: Johanna's steadfast belief that nobody can do this alone prompted her to not only find the help she needed but to also fulfill her long-held dream of helping others to find their way out. [00:30:30] She opened The Alliance for Eating Disorders Awareness in the fall of 2000. They provide programs and activities aimed at outreach, education, early intervention and advocacy for all eating disorders. She is truly living out her dreams.
Johanna: As a whole I think our field is getting better, but we need to do a better job that recovery from eating disorders is possible because when my best friend was diagnosed with breast cancer eight seven, years ago now. [00:31:00] Pretty significant breast cancer. I remember her getting off the phone and looking at me. I remember thinking, "You're going to recover." Because October everything is pink, and there's so many survivor stories. We need to do that in the eating disorder world. I'm so happy that there are so many advocates out there now that are using their voice.
Ellie: I love what you say too that every voice matters and you learned that through your personal experience. Thank you so much. We will definitely link to the Eating Disorders [00:31:30] Coalition and the Alliance for Eating Disorders on our website, mentalnotepodcast.com. I'm just so grateful to have had your story shared. I'm excited for people to be able to follow you and get involved. Thanks for sharing your story every day.
Johanna: Thank you so much for having me on.
Ellie: Johanna performed the incredible work of taking generational trauma and reversing it. She now stands in the gap between other people's suffering and a future of healing that will affect generations after them. You can also be a [00:32:00] part of the dramatic change that Johanna and others have dedicated themselves to.
Johanna: There's so many ways to become an advocate. First and foremost, I would absolutely check with your treatment team to see where you are as far as your ability. There are so many other ways besides speaking to be an advocate. For example, the Eating Disorders Coalition does action alerts every so often. Go on and register to get action alerts where you can call your member of congress or send an e-mail. [00:32:30] You can write blogs.
All of that stuff matters because you're creating conversation and every time we talk about eating disorders, we're smashing the stigma around it. We're launching a brand new site. We're looking for people to write blogs for us if they're interested or join us on Capitol Hill twice a year when we do Hill day with the Coalition. There's so many ways to become involved, and people deserve to hear you and people deserve to see you.
Ellie: By familiarizing yourself with signs and symptoms of eating disorders, [00:33:00] talking with your physician if you think you or a loved one might be struggling or better yet, accessing resources like The Alliance for Eating Disorders @allianceforeatingdisorders.com or Eating Recovery Center @eatingrecovery.com. Both offer free information and resource libraries to help you on your journey.
To learn more behind the scenes about each of our podcast guests visit our website, mentalnotepodcast.com. Mental Note is [00:33:30] sponsored by Eating Recovery Center and Pathlight Behavioral Health Centers. To talk to a licensed counselor and see if treatment is a good idea for you, call 877-411-9578. I'm Ellie Pike. Till next time.
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