On today’s episode, we will have two special guests for a candid conversation about the seriousness of an eating disorder diagnosis. Dr. Karen Nelson is joined by Dr. Emily Wacker, PHD, LMFT licensed clinical therapist at Melrose, and Diane, who tragically lost her daughter to an eating disorder. Eating disorders can be life-threatening and we feel it’s important for our listeners to understand the potential impact on the person with the diagnosis, but also on their parents, guardians, spouses, and friends.
On today’s episode, we will have two special guests for a candid conversation about the seriousness of an eating disorder diagnosis. Dr. Karen Nelson is joined by Dr. Emily Wacker, PHD, LMFT licensed clinical therapist at Melrose, and Diane, who tragically lost her daughter to an eating disorder. Eating disorders can be life-threatening and we feel it’s important for our listeners to understand the potential impact on the person with the diagnosis, but also on their parents, guardians, spouses, and friends.
Click here for a transcript of this episode.
Dr. Karen Nelson: [music] Eating disorders thrive in secrecy and shame. It's when we create a safe space for honest conversation that we'll find the opportunity for healing. Hi there, I'm Dr. Karen Nelson, licensed clinical psychologist at Melrose Center, welcoming you to Melrose Heals: A Conversation About Eating Disorders, a podcast designed to explore, discuss, and understand eating disorders and mental health. On today's episode, we have two very special guests with us who will be sharing information and having a candid conversation about the seriousness of an eating disorder diagnosis. Eating disorders can be life threatening, and one of our guests will be talking about that reality. We feel it's so important for our listeners to understand the potential impact on the person with the diagnosis, but also the impact on parents, guardian, friends, and family. Now, before I begin, I invite you to take a deep breath, and join me in this space. So, first, as we get started, I have the joy of welcoming two amazing guests with me. Emily, you were a previous guest on our podcast. I would love it if you could remind our listeners about your previous episode and also your role here at Melrose.
Dr. Emily Wacker: Yeah. Happy to be here, Karen. So I am Emily Wacker. I'm a licensed marriage and family therapist with Melrose. I do mainly outpatient work with kids, teens, young adults, um, and I also run our support group.
Dr. Karen Nelson: And Diane, welcome to the podcast. So happy to have you here with me today. We're just so grateful that you're here to share your story, and I would love it if we could just start with a brief introduction.
Diane: My name is Diane, and I'm a member of the Melrose parent support group that's led by Emily and very pleased to be here. I've been involved with the parent support group for about eight years, and during that time, my daughter, Brooke, was a patient at Melrose and did lose her life to the eating disorder as well. But I've come to realize that needing support, and being able to help support others during that time, is very important. So that's why I'm very pleased to be a part of Emily's group.
Dr. Karen Nelson: I'll be chatting with Diane initially to just talk about your story and your experiences. Let's get started and begin by telling us about your daughter, Brooke.
Diane: We loved downhill skiing. When she was 18 months old, I would take her over to Highland Park.
Dr. Karen Nelson: No way.
Diane: And so she was on skis at 18 months. We water skied together. Um, very active, bike riding. We just had fun.
Dr. Karen Nelson: Did you?
Diane: She was a fun person, an energetic, active…fully enjoyed life. Very caring. Family meant a lot to her.
Dr. Karen Nelson: Anything particular you remember that made her laugh or made her kind of crack up?
Diane: Anything to do with Christmas and the holidays. That was her time. She shined. If it started in July, [Karen laughs] that would even be better.
Dr. Karen Nelson: She would be all on board.
Diane: [overlapping] Absolutely, absolutely.
Dr. Karen Nelson: [overlapping] That’s awesome.
Diane: It definitely would bring out the kid in her. And she made everybody enjoy the holidays. It was always about the glitter and the bling.
Dr. Karen Nelson: Yes! I love it.
Diane: The lights—
Dr. Karen Nelson: I love it.
Diane: Absolutely.
Dr. Karen Nelson: For sure. That was just, that was her jam.
Diane: It was. It was.
Dr. Karen Nelson. Aw, so cool.
Diane: Yep.
Dr. Karen Nelson: As you were kind of describing that lovely full life that your daughter had, when did you start to notice that things were a little off and…and that she might be struggling with something?
Diane: Well, I think it was kind of the junior year, where that's the big year of, you know, all of the college entrance exams. The “What are you going to do for the rest of your life?” big decisions kind of became overwhelming, I think, to basically every 11th grader and parents that go along with it. And during that time, she…I guess what the easiest way to say is, was diagnosed with, you know, anxiety and some slight depression. And at one point in time, I had taken her to a therapist, and they had kind of suggested an OCD tendencies as well. And so, those were the topics that were treated, was the anxiety, depression, and OCD. As a parent looking back, don’t think that much education came to me. And this would have been back in the early 2000s, which was also…mental illness, etc. was not necessarily talked about out in the open. It was a “behind closed doors, in the house” type of discussion that was had. She did test positive to a number of food allergies. So when she would say, “My stomach hurts because of…” And then you could actually go look at the sheet that had come back from the allergist saying, yes, you are allergic, sensitive to a number of different foods. It kind of gives them a place to hide behind. And that anytime their stomach didn't feel right, they weren't comfortable eating a particular food, they would blame it on, “I have allergies to this food.” And so that became a big part of what she was hiding behind. But a lot of that is looking back, because you don't know what you're really into at the moment. Because there's so much going around. Um, you know.
Dr. Karen Nelson: But you remember some of the weight loss that…that started to be noticeable—
Diane: Yes.
Dr. Karen Nelson: —or concerning? Or what do you remember about that, Diane?
Diane: Um, especially between her junior and senior year and high school and then going into college. Eating at school became a real issue, especially with your freshman year. That became very apparent that there was, um, a significant weight loss, and especially by people who hadn't seen her in a while. They would comment, if not to her, to me, um, “Boy, has she lost a lot of weight?”
You know, “Is she sick? What's going on?” Where, when you sometimes live with something day to day, you don't necessarily see the fine details. But as you look back at pictures, it was like, “Wow, how did I miss that?”
Dr. Karen Nelson: And so it…it also sounds like the eating piece started to really become apparent late into high school, then into early college. But she had some general mental health things that were happening, right? Sounds like she was anxious. That…maybe a previous diagnosis of OCD. That all started to kind of spin together. And there was some complexity around it.
Diane: You know, there was. And you think back to the conversations that you had. Like, “How did your day go in school?” And the stress of, you know, “What am I going to do for the rest of my life?” But also just the random bullying that goes on with kids. It might not last for years, but there might just be one or two individuals in high school who pick on you for some reason. You're dating their old boyfriend. You seem to have eyes for the same guy I do. I don't like the way you wear your clothes. I don't like the choice of your clothes. Kids don't need a reason to bully, they just do. And so numerous times she would come home saying, “So-and-so is bullying me, again.” And you, um, you listen to the conversation. You bring it up to the school. “Is this something that's common? Is this particular person a bully?” And they'll say, “No, we've never, you know, had an incident.” So then it's pretty much focused on this particular person. And then the discussion ends. They've changed a grade. They're not in the same class. They don't see each other in school. And it appears to go away, but I think the initial hurtfulness of the bullying stays with them. And um—
Dr. Karen Nelson: Good point. Well, and just that aspect of what an overwhelming experience it is for a lot of kids to go through high school, right? And anything come up for you, Emily, as a therapist working with kids?
Dr. Emily Wacker: Yeah, it just makes me think about how kids respond so differently, right? Like, I think depending on their childhood experiences, their temperament, their personality. Some kids have a little more, I don't…almost resiliency with when those comments come in. They kind of have a wall. And some kids are more…more sensitive to that. And there's nothing wrong with that. That's just the difference. That's just humanity and diversity. But I think about that with Brooke, of her just maybe being more of an empath and being more susceptible to those comments and that bullying.
Dr. Karen Nelson: Absolutely. And so as…as mom, and…and interesting, and I'm glad you bring that up, you know, when we're in the moment, in the thick of it, we do the best that we can as parents, right? Like, I'm trying to respond. I'm trying to problem solve and…and be as supportive as I can as a parent. And we know eating disorders can be sneaky. That's definitely something we know about eating disorders. When do you think you, as mom, started to notice this eating thing, we might want to look at it directly. What, what do you remember about that?
Diane: In college, when it got to the point of the secretiveness of it. We had different eating schedules to begin with. And then it was, she would always eat later than me. I was always up early going to work. So I would eat earlier in the…early in, you know, like more towards dinner hour. They were active. They were, you know, busy, and not get home until, say, 7:30 or 8. And then they would have dinner. So when you don't necessarily eat directly with somebody, you assume that they're eating what they usually eat. Um, but the…the biggest focus was, um, the constant, um, complaining of the stomach upset, um, the irritability, just the chronic misery with that whole GI tract. And then starting to explore the GI tract and get more focused on, okay, are they really allergies? For me, it had gotten so out of control with, “my stomach hurts, my stomach hurts, my stomach hurts,” that I finally just said, “Okay, we're going to the hospital.” And in that moment is when my world, our world, imploded. When I took her to the ER, because it was on a Saturday morning, um, I made the decision. I'm not working. I'm taking her to the hospital. They ran a number of tests and finally came out and said, “Your daughter's in heart failure.” That was when my world just totally imploded.
Dr. Karen Nelson: Oh, Diane.
Diane: So you go in thinking that it's, you know, it could be an ulcer. It could be, you know, a number of things, but you never think that they're in heart failure. And so from that moment on, um…um, our world changed.
Dr. Karen Nelson: So tell me the story of…of how it came to be that she eventually received a diagnosis of an eating disorder?
Diane: We ended up in the ER, and so she was there in the ICU. And, um, every tube…can imagine, you know, was coming out of her. And it wasn't directly that point that she was diagnosed with an eating disorder. They had said her heart had a virus. And that, I think, is what the eating disorder focused on. She was discharged probably within 48 hours, which I was frustrated with at that point, because she had not really even consumed a meal in the hospital. And they're sending her home. And so, probably less than 10 days later, we were right back there. A senior physician came in and just laid it on the line to her, front and center. “You have an eating disorder. Your body is malnourished. That is why your heart is in failure. That is why probably a number of your other organs are in failure, and if you don't take action now, you will die.”
Dr. Karen Nelson: What a moment, Diane.
Diane: And it was…I'm eternally grateful to that physician because he had just…was the physician of the day, um, and he walked in—
Dr. Karen Nelson: And named it all.
Diane: —and named it all. They wanted her to either go to family program or go to Melrose to be assessed. And so she and I ended up cutting a deal that day. “Yes, I will look at Melrose, if you are willing to go find a therapist for yourself.” It was an easy question to answer. Absolutely.
Dr. Karen Nelson: Let's go.
Diane: So that was my introduction into the eating world…eating disorder world. And it was honestly a flurry. Um—
Dr. Karen Nelson: I bet. I mean, going from, you know, a daughter who's saying, “Oh, my stomach kind of hurts.” And, you know, assuming or looking for answers through, like, food allergies and that type of thing, to then getting this realization and diagnosis, it sounds like it was just overwhelming.
Diane: Ed was very clever. Um, and looking back, Ed was very present in the house.
Dr. Karen Nelson: When we use the word Ed, it is an acronym for the eating disorder. So some people will call it Ed, some people call it, um, they might name it something different. But during this podcast, you may hear us use that reference of Ed, and we're just specifically talking about the eating disorder.
Dr. Emily Wacker: And Diane does such a great job in our support group of naming…you know, if a parent will sort of say their situation, Diane will say, “It really sounds like the eating disorder is kind of sneaking around.” Like, it sounds like people are walking on eggshells. And now having heard your story, Diane, it's so…obvious why you can provide that support. Because you were there. I mean, just the way there was so much walking on eggshells. So much denial. So much that the eating disorder did to disconnect you from that experience, because if you knew more of what was going on, it would lose all its power.
Diane: Right. And that's where being involved in…in the parent support group, especially when I think I went to my first one in 2015 when we were at Melrose. The information that we were given, constantly, explained what it was, how it works, and the fact that it loves pulling you away from everything and all your friends. And that's when, you know, I really started…started to put some of the pieces together of when some of her friendships had changed. Even her dating situations had changed. Um, it got to the point of where she could no longer do her job and that's…was her passion. It was…how everything was lost when it became so apparent that she could not function in the real world at that point.
Dr. Karen Nelson: Well, and I think the piece that comes up for me, what I notice as I work with, you know, patients and families, that aspect of secrecy and misunderstanding. Because we want to…it makes sense that we want to trust our kids. We're trusting what they say to us, and we want to be really clear. It's not our kid who is deceiving us or, you know, making those kind of secretive movements. It's the eating disorder doing all of those behaviors. And so it just makes a lot of sense that, you know, as Brooke's mom, you were thinking, “Well, she must be sick. Like that…she mustn't feel well, maybe that's the reason.”
Diane: Yeah, it's all hidden. It's all disguised.
Dr. Emily Wacker: And I'm glad you brought up the point about it hiding…it sort of using the GI and the allergies as a way to hide. Just clinically, I see that a lot with, um…kids will start complaining about that. And just like you did, you want to trust your child. And parents will sort of go down that track of trying to figure out if it's allergies. And it's just so apparent the way that you said that story. It's…it's going to be everything else but the eating disorder. It wants you to go to the GI. It wants you to figure out all these different paths. And I think the tricky part is, there is a lot of GI distress that comes with having an eating disorder. It's kind of part of the nature of it. So they're not lying when they say that. But I think it's an important point for just parents and loved ones to be mindful of, is like, how much is that maybe taking you off the path of really getting the eating disorder treatment and care that your loved one needs?
Dr. Karen Nelson: It becomes almost…kind of validated restriction, right? Of like, “Oh, well, see, my stomach doesn't handle gluten, so then I don't have to eat gluten.” And again, like, I like how both of you are talking about, we get it, that people have a variety of different potential health issues, but doing more exploration, right? When we have not just one symptom but kind of a collection, that's kind of how we diagnose an eating disorder, right? We don't just look for one issue that might be happening. And now what I really hear you talk about, Diane, is in retrospect, you can see the collection. Right? It's like, oh, when I start to put all these aspects together…again, how can I know what I don't know? So we want to have a lot of compassion for that. And that's why we do podcasts like this. And we…we do the parent support group so we can educate and help people understand this is what it might look like.
Diane: If you talk to every parent, or loved one that has, you know, participated in Emily's group…everyone had a different story. Everyone's child or loved one, spouse, parent, whatever, had a different story as to how it manifested itself in them. Some had a very traumatic experience, which, you know, Brooke did have a couple of very traumatic experiences in her life, which may or may not have flipped her switch. But there's not just one way with which an eating disorder is manifested within a person. It is so complexed, this feeling of hopelessness that I have. Somebody's in control of my life, everywhere I turn around, and I need something that I can control myself. And a lot of us, food. What you stick in your mouth. Whether or not you will or you won't eat.
Dr. Emily Wacker: Well, and it's the control of food, because then that controls the weight. Which I think is one of the just…core pieces of the eating disorder, is that sense of, I want to change the way that my body looks or have it look a certain way. And maybe being able to have that sense of agency over your body, even though it's not maybe being used in the right direction.
Dr. Karen Nelson: Really good point. When you think back, Diane, on…as Brooke was engaging in eating disorder treatment, what do you remember about that? What was that like for you as her mom?
Diane: It was horrible.
Dr. Karen Nelson. It was horrible. Tell me, what do you remember?
Diane: As many parents have said when they go and see their loved one at Melrose, um, you never hear how good it is. You hear nothing about…“I'm engaging in the people. I'm, I'm learning from the programs.” You hear how mean they are. You hear, “My stomach hurts when they're refeeding. My clothes don't fit. I hate it here.” And as a parent, you want to make that better. You want to make it go away. You want to fix it. And I think, as a parent, that's what you want to do. You want to fix it. You want to make it better. So you, you know, you talk to the staff and they explain it to you the best they can. That when you are refeeding a person that has been starving themselves of nutrition—not necessarily food, um, but nutrition—um, it's going to be very uncomfortable. And they work with them to let them understand what's happening. But right then, their brain is so malnourished that all that eating disorder is chatting and ranting to them the whole time is, “Look at what you just ate. Aren't you shamed?” I mean, And it was just, it was awful, I have to admit. And Sandy, who was the facilitator at that time of the parent support group at Melrose, was so good about explaining to us right at the beginning of what was…all of us newbies in class, like, what are we dealing with? What I remember so vividly was, you know, she said, “Okay, let's say they're going to eat at 8 o'clock in the morning. By 7 o'clock, Their brain is already chatting, screaming at them, ‘you're gonna eat, you're gonna eat, you're gonna eat.’ And then they eat. And then after, for an hour, then their brain is shaming them because you actually ate it. You ate all of that. Do you believe that you ate all of that? How could you have eaten all of that? And then their brain starts ramping up again because it'll be time for their snack. And so we have to think…if that's what their brain is telling them the whole time, all day, every day? Around every meal and every snack?” And so that helped all of us understand kind of what was going on in their brain.
Dr. Emily Wacker: What's such a hard part about it is that all of that noise that you talk about does get better. But the means, the vehicle to get better is the eating. They have to eat the meals and snacks. They have to do the thing that's making them so physically and emotionally distressed.
Diane: Right.
Dr. Karen Nelson: And so tell us about that experience, you know, as Brooke's mom. As Brooke kind of moved through eating disorder treatment, there…there were times of improvement, and then it's not uncommon that some patients may relapse back into their eating disorder. Any thoughts on that, or any memories of what that was like?
Diane: She did restore weight, enough where her brain was functioning. Her brain was working again, um, and being able to make decisions. I know she worked very closely with her care team at Melrose, because she didn't want to let her care team down. And that was every one of them. And as I have had the opportunity to look back on a lot of her notes, journaling that I was never privy to until I found it, and um, start reading this, um…how she would use such strong terms against the eating disorder. I will win. And just being able to start reading that now, um, it's been a number of years since Brooke has died, but you need that time to kind of process exactly what happened. Um, and now as I'm reading this, I…it's not something you can sit down and read hours on end. Like, a half an hour and then I put it away. Um, but the challenges of her will to live against this eating disorder. You could see from the beginning to the two years of treatment how forceful she was becoming against the eating disorder. And…which, for me, was the will to fight this…this monster. and how I'm not going to let it win. Which was, was interesting—
Dr. Karen Nelson: I bet.
Diane: —looking back—
Dr. Karen Nelson: [overlapping] Looking back.
Diane: —that you didn't know what was going on at the time.
Dr. Karen Nelson: And ultimately, um, the worst happened.
Diane: Mhm.
Dr. Karen Nelson: Brooke lost her battle, um, and passed away. Tell us about… tell us about that, you know, as…as she was potentially becoming sicker, or as it was nearing the end, memories about that.
Diane: It was coming up on Christmas, um, her favorite time of year, um. And we, you know, we just did the holiday stuff. We went and got the tree. You know, that kind of things that were so important to her. And it was not something that either one of us had expected. Because if…um, she said, “I don't want to die. I want to live. I want to beat this.” So her mind frame was, I don't want to die. I'm not going to…um….I'm not going to let it kill me. I'm going to win. But in that time also…you know, her body failed her, and she passed away in her sleep.
Dr. Karen Nelson: And how old was Brooke when she passed away?
Diane: 29.
Dr. Karen Nelson: 29. Yeah.
Diane: So she was young.
Dr. Karen Nelson: So young.
Diane: But it wasn't something that you could have said that she had just, you know, gone down to 50 pounds in weight and stuff like that. No.
Dr. Karen Nelson: Right
Diane: I mean, she was putting on weight. She had color back. I mean, we were on what we thought was the upswing.
Dr. Emily Wacker: She hadn't given up.
Dr. Karen Nelson: She hadn't given up.
Diane: Right. No, she was—
Dr. Karen Nelson: [overlapping] Absolutely.
Diane: —becoming more of a fighter at that point, because I think she really knew, possibly, what had transpired internally. Um.
Dr. Karen Nelson: And what was the timeline, Diane, from diagnosis to when she passed away?
Diane: Uh, we went into the hospital February of 2015, and she passed away November 2017. So it was two years of Melrose, and doctors, and having everything out in the open, and the struggles, and the fighting of it. Um, versus if you look back, then probably…well, mid, early 2000s of when she was in high school.
Dr. Karen Nelson: Right. So a lot of that kind of suffering, symptom use happened in secrecy.
Diane: Right. Under the guides of anxiety, depression, OCD, food allergies, everything kind of all hidden in that.
Dr. Emily Wacker: Am I understanding it right that the, sort of, cause of ultimately her death was almost the years before diagnosis? Just the effect that the eating disorder had already taken and the malnourishment had taken on her body, even prior to diagnosis?
Diane: Yeah. I really strongly would believe that. Because when a child dies, they do an autopsy. And the, um, coroner had the most difficult time determining what Brooke's cause of death was. And so I reached out to her, and I said, you know, “Do you have any idea of, you know, what's going on?” And she said, “No, the pieces of the puzzle don't fit.”
And I said, “Did anybody ever tell you she had an eating disorder?” And they said, “No.” Within like 48 hours, all the pieces of the puzzle for the coroner fit together. The…all of, everything. You know, um, the organs, I mean, the…the heart failure, the liver failure, and the kidney failure. That answered all of her questions with that one statement: had an eating disorder.
Dr. Karen Nelson: And I think that aspect…and for our listeners, it is one of the reasons why we feel so honored to have you with us today, Diane, to be able to talk about the significance of this. I think, as we've been talking, eating disorders are in the business of minimizing. They say it's no big deal. It's fine. What's the big whoop? You know, my patients will share with me, “So if I skip a meal or two, who cares if I don't ever eat breakfast, Karen?” And the importance for us to acknowledge and identify the seriousness and the life-threatening risk of utilizing eating disorder behavior. And just the deep pain of…your daughter was suffering, unknowing. And when we have more awareness and more education, the ability to intervene sooner…we know is so important for recovery. Because that damage, as Emily was stating, as we understand her death, the damage was…happened prior to, most likely, right? That that enduring damage to some of the organs happened prior to her eventually getting eating disorder treatment. So imagine the significance of, as you share your story, of family to intervene sooner, and move that patient into recovery. It's so significant.
Diane: You would never think to ask that, but Emily points out so well…to especially new parents that have this just terrified, “I'm new here and I know nothing,” was to make sure that their loved ones are getting the proper testing and diagnosis. And that it needs to be done by a trained specialist. And if you don't check in with a support group, how are you ever going to know those answers as to what to look for?
Dr. Emily Wacker: Because it's another way, this theme we've been talking about of the eating disorder keeping power and hiding…is I've had so many well-intentioned parents bring their child to the pediatrician that they've known their whole lives and said, “Everything checks out. It's fine.” And it's not the intention of the pediatrician, but they, they just don't have sort of the specialization to know what they're looking for. And the great thing is, there are eating disorder specialists that know exactly what to look for, and it can make all the difference.
Dr. Karen Nelson: Kind of nuance that happens when we do get specialized support. And Emily, you know running the…the support group and Diane, participating and..and sharing her experience. Emily, I would love it if you could share with our listeners, maybe just a little more information about the support group?
Dr. Emily Wacker: Sure, so my understanding, and Diane kind of supported this, was that, um, the parent and supportive others—we call it PSO some…sometimes—um, existed for years at Melrose. And, um, was…was in person, prior to the pandemic. Um, and it is a way of having parents, loved ones, support people, spouses…um, there's no cost. It's funded by a grant, and you come in, and it's led by a therapist at Melrose. And it's just a community of loved ones whose…the, really the only criteria is that you're supporting someone who might have an eating disorder, has an eating disorder. And what we were able to do when the pandemic happened, we transitioned it virtually. And I think that opened up lots of doors for people. So we've been running it…I took it over then, in 2020, and we've been running it virtually. Now going on three and a half years, and we have always had at least one person every single week. Usually it's about 10, but every single week for three and a half years, we have had at least one person. Like, there is a need for this. Um, yeah, and so the primary purpose of it is to have a community, um, of people that are going through the same experience. I…I share some expertise, but I, first and foremost will open it up to the group and say, what, what are your thoughts on this person's question? Like, they…they wanna hear from each other. That's…that's where the beauty of it is.
Dr. Karen Nelson: [music] If you or a loved one are suffering from an eating disorder, we're here to help. Call 952-993-6200 to schedule an appointment and begin the journey towards healing and recovery. To learn more about Melrose Center, please visit Melroseheals.com. Melrose Heals: A Conversation About Eating Disorders, was made possible by generous donations to the Park Nicollet Foundation.