On today’s episode we will continue our conversation around the seriousness of an eating disorder diagnosis. Dr. Karen Nelson is joined again by Diane, who tragically lost her daughter to an eating disorder, and Dr. Emily Whacker to discuss the importance of taking these diagnoses seriously as well as the need for support for everyone impacted by an eating disorder.
On today’s episode we will continue our conversation around the seriousness of an eating disorder diagnosis. Dr. Karen Nelson is joined again by Diane, who tragically lost her daughter to an eating disorder, and Dr. Emily Wacker to discuss the importance of taking these diagnoses seriously as well as the need for support for everyone impacted by an eating disorder.
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 will continue our conversation around the seriousness of eating disorders but also the need for support. I'm joined again by Diane and Dr. Emily Wacker to discuss the importance of support for everyone impacted by an eating disorder. Now, before I begin, I invite you to take a deep breath and join me in this space. Emily and Diane, welcome back to the podcast. We're going to continue our conversation right where we left off last time, talking about support groups. Now, Diane, do you have any memories of that first group you attended? Were you nervous? Were you thinking, “Should I even go? Is this going to be worthwhile?” Tell me about that.
Diane: Um, you wondered if it's going to be worthwhile. You…a couple of times, um, there were just one or two people.But the more people that came, it reaffirmed that you needed to be at this group. You went to listen to others, mainly to listen to, at that point, the facilitator, Sandy, who was…we were just hungry for knowledge…explained to us what we're dealing with. And then she would open it up for those of us that had questions. And so you learn listening to other parents, listening to other loved ones. And the best part is, you find out that you're not by yourself out there. Even though you might have the dearest of friends that are very empathetic for you, um, you need…you need to have acquaintances that are living your nightmare. Because nobody else really understands what your nightmare is, because their child is not suffering, their loved one is not suffering. And so by that, it opens you up to, um, getting to meet others who…they might not have the same experience that you do, but there's the common thread that runs through, um, everybody. Whether, you know, it is anorexia, bulimia, OSFED, and, you know. So many different ones…diagnoses have come to light since Brooke was there, which I think is great, because it gives the parents and even the individuals, “Oh, maybe this is something that I need to pay attention to.”Versus I think back then, it was just pretty much, you know, binge and purge, bulimia, and anorexia is what everybody, you know, heard. But now the different diagnoses really help, um, parents question, and even individuals question themselves.Like, “This isn't right, is it?” Eight years later, we still get together.
Dr. Linda Nelson: That's amazing.
Diane: Um…unfortunate bond of a group that you belong to, that you really are sorry that you belong to.
Dr. Emily Wacker: Yeah, don't you call yourselves the Melrose Moms? You've got…there's like four of you—
Diane: [overlapping] Yep.
Dr. Emily Wacker: —that still support each other.
Diane: Yeah.
Dr. Linda Nelson. Any potential message to a parent or a loved one, who maybe looks at the flyer and thinks, I don't know, I mean, is it…is it for me? What if it's awkward?
Diane: Absolutely. Um, give it a shot. Um, and don't just say one and done, um…multiple times because, um, each time is a different experience. Um, different questions are asked. Um, between week one and week two, you've had a chance to process what was said…listening to others so that you might have, um, some questions more defined for your next time. The first time you're just kind of overwhelmed. Um, so many people say, “I'm here just to listen.”That's wonderful, because we were all there just to listen the first time, um, to formulate…to get a better understanding of what you're going up against. The first timers through… um, they have been exposed to the fact that there's, uh, parents and spouses that this might not be their first time.It could be their third or fourth time that their loved one is back in need of, um, help again. And that… that's the reality of it. It's not a…30, 60, 90 days, you go through the program, and you're done. It's not that. Um, it…it comes and goes. Um, they could, you know…your, your loved one could be recovered, in recovery mode, um, doing well for six months, a year, and all of a sudden something triggers, and they're…they're searching for help.So as hard as it is to listen to somebody else that says, you know, well, you know, “Five years ago, we left, and we thought we were, you know, good. Um, but we're back.” Um, the parent support group, also, as Emily's worked so hard to do is…bring in recovery speakers. Hope. Every parent needs to know and hear hope, hopeful stories.Um, we'd have individuals that would come in back then, um, that would let us know that there is light at the end of the tunnel. That they can beat this, um, which everybody needs to know. So, even the…some of the recovery speakers themselves have said it wasn't an easy journey to get here. But at this moment in time, they're there, not knowing what five years down the road might bring, and hopefully they can all just continue on recovered. But…
Dr. Emily Wacker: I'm glad you…you mentioned the recovery speakers. That's been a really important….So every other month, we have a speaker, a recovery speaker, come in and instead of doing our typical check-ins and processing for group that night, we have the speaker tell their story.And it's always someone who's gone through Melrose, is…has kind of completed or discharged, and considers themselves to be in recovery. And then what's the most beautiful part about it, is that there's about a half an hour where parents get to ask…and support people get to ask their questions. And just really honest…and like, are we ever going to get through this? And what do I do?And what do I say?And what do I not say? And the tears that happen during that group, and like the healing, and…I always feel this shift the week after. When everyone comes back, it does feel like there's this little, this increase in the sense of, “Okay, we're gonna get through this. We saw that somebody got through it. We can do this.” So I'm glad you mentioned that, Diane.
Dr. Linda Nelson: From a therapist's perspective, Emily, I'd love your insight on what have you noticed as far as the importance of a support group? I wonder, you know, are there any particular aspects or characteristics that you notice that show up in a support group? And why it ends up feeling so helpful?
Dr. Emily Wacker: Yeah, one of the first things that comes to mind is that there seems to be this theme that the first night that someone attends, they'll start to say their name, and a few details about their loved ones, and they just start to cry. Um, and I think it's this…how I've made sense of it is the support group offers a space for people to say these things out loud for the first time. Sometimes, like, “This is my loved one. This is what they're struggling with, and I don't know what I'm doing. And I am scared to death.” Um, and so to be able to say that in a supportive space with people who've been there, um, I think it's just…has, has been really beautiful. Another thing that's, um, I think been important about the support group is to have—especially since we've had it for years and years—and to be able to have it virtually. We do it actually virtual and in person now so you can join either way. It's been really enlightening to see people come back. So there's no commitment to attend for a certain number of weeks. Like, people will sort of come maybe while their loved one is in a higher level of care. And things get better, and they fall off for a little bit. And then maybe they join back if, if there's a relapse. But we've also had parents who come back and say, “My loved one's been in recovery for two years, and I just want you guys to know, like, this group was really helpful. And you guys will get there.” So it's been…it's been cool to sort of see the different ways that people can show up. And the other thing that comes to mind is having people in the same group who are going through the same thing.
So the number of times, and Diane already said it, when people will say, “Now I know I'm not alone.” And then the other piece is that people are at different points in their journey. And so I think it can be…for parents who've maybe been doing this a couple months up to a year, they get to then support someone else who's new. How I've observed that is it…it looks really empowering. I think that parent is like, “Yeah, wow, now I have this experience and this knowledge, and I get to, like, share that with somebody else.”
Dr. Linda Nelson: Any thoughts on that, Diane? Does that—
Diane: [overlapping] Oh, absolutely.
Dr. Linda Nelson:—feel true?
Diane: I've watched the same thing, um, because I don't…have I been involved with this one too-ish?
Dr. Emily Wacker: Yeah, I think you joined, again, um…it was virtually.So I want to say, like, 2021. And Diane joined at a great…we've had a wonderful group this past, like, almost going on two years, of some….of like, ten, um, parents and loved ones that have been attending. It's just this really cool community they're creating.
Diane: And you set the empowerment.And I've watched that probably this last three to four months in particular, where their loved ones, um…their weight is restored.They have their child back, their loved one back, because their brain has been fed. They're able to make decisions. They're finally able to see them back at college, you know, picking up their life where it stopped for such a long time. Um, and then their ability to share with others. Yes, when we started this, we knew nothing. We told them flat up, “We don't know what we're doing. We're gonna make mistakes, but most importantly, we love you.” Um, and just like, you know, anything, blame it on the doctors. “They told us we need to make sure that you consume this amount of food each and every day. It's not our choice. We're following orders. You're following orders [laughs]. And if you don't follow the orders, the consequences will be: You might not be able to go to school. You might not be able to move out on your own.” And this is where the support group helps each other, um, let you know that you are making the right decisions for your child.You can't let the eating disorder tell you, “Hmm, I'm going to go to school anyway,” when your gut is telling you, “No, you don't have the brain power, the decision-making power, to take on even a half-load of classes at school.” Um, so we're going to help you take out this year of your life and focus on getting well.
Because every 18-year-old thinks that by taking 12 months out of their life to get well, that they're going to be set back for life. Well, that's the maturity of a parent: You know it's not. But you also are aware enough that you know if they don't take care of their health—um, and like, we've had discussions before. I think the easiest one that people have brought up is, if your loved one had cancer, you would do anything and everything you could to make sure that that disease was attacked full-force.It's the same thing. It just has a different name—
Dr. Linda Nelson: That’s right.
Diane:—mental illness and eating disorder. You will do anything and everything you can to help your loved one fight this battle, so that they can put it behind them and march on through their life.
Dr. Emily Wacker: What's cool about that analogy that Diane just said is, I don't even say it anymore in group. It's other parents that…when parents join, other parents will say, “If this was cancer, you would, you would treat this seriously.” If you…you know…I don't even have to say that, like, the group has sort of, um, recognized that and seen that in their own lives.
Dr. Linda Nelson: I think it is important to talk about the kind of emotional load that does happen for a person who is supporting someone with an eating disorder. And, and what I just hear so beautifully you both talking about is, you know, the significance of that…when my loved one is diagnosed, and the impact of having supportive others around the caregiver for the person who's diagnosed. Like we…we know, and the previous podcast that Emily was on, we talked about supportive factors in healing an eating disorder. So we know it's helpful for patients to have support. But sometimes I think we might not continue the conversation and identify, you know, the parents, the loved ones, the cousins, the best friends, as they're trying to support their family member with an eating disorder. That can be exhausting, and that's why we're having this discussion today.
Dr. Emily Wacker: I think our…our support system is our most important but underutilized resource that we have for eating disorder recovery. It, you know, like it…There are certainly circumstances where people have very minimal support. And my experience clinically, though, is that's more rare. That people do have support. It's about knowing, how do I ask for it? How do I get creative about, maybe if I don't have a great relationship with my parents, who else do I ask for support? Um, and I think part of why this group is really important is it's about, you know, taking that support, and giving support to the support. Because caregiver burnout is real, right? And so we're…we have these people who are supporting the person with the eating disorder, and they’re such a vital resource. But then they don't have the ability to care for themselves. And so support group offers this one small way of being care that that support person needs.
Dr. Linda Nelson: Was that a vital connection for you, Diane, to have the support of others?
Diane: Absolutely. Absolutely. Like Emily said, um, some of us are still in contact. Um, and one thing that…it's not just for the parents, but the siblings.We've had a number of siblings that have reached out to look for support too.Because the parent is…a lot of families have more than one child, and the other children have a tendency to get lost, neglected, or they feel they're neglected, because the sick child is getting all of the attention. And this played out, you know, with my other Melrose moms. Brooke was an only child. But some of the other ones, either the younger siblings were…um, “I didn't get that…I didn't get that time. My special moment for high school graduation didn't happen because of all of the attention.” So the support group also is there for siblings so that they can figure out how they can get support too.
Dr. Emily Wacker: And there's no space, at least as far as I'm aware of, within the eating disorder community…there aren't a lot of spaces for the siblings or even the parents or…We don't have these, um, you know, a lot of people will say in AA…or in, um, alcoholism, there's AA. And there's Al-Anon, and there's these spaces where we can come together and talk about these things. And so that's a good example, Diane, of, you know, siblings often get lost in the shuffle, and here's a space where they can be seen a little bit.
Diane: And they can ask their questions as to how they can best interact with their…with their sibling.
Dr. Emily Wacker: And, like we talked about when I was on the podcast previously, sometimes the sibling is the person that's closest with the person struggling. Or maybe an aunt or a cousin.And so we've often had aunts, cousins, siblings come to support group.And they're not affiliated with Melrose, and they just say, “I think my sister or niece is struggling. What do I do?” And so what a great avenue, um, just to be able to have the support group of the people there to say, “Here's how you could get them connected to resources.Here's what you could do.”
Dr. Linda Nelson: What really comes up for me as I hear you both describing the community of the support group…it feels like such a safe space to talk about things that I quite literally may never talk about with anyone else. And so any…any other examples of kind of particular topics that may come up? I mean, it feels like we talk about “How do I support my loved one who has an eating disorder?”But not…the focus isn't just on supporting my loved one with an eating disorder. It's also supporting the mental health of the person who shows up to the support group.
Dr. Emily Wacker: Yeah, there's…it's been interesting running the group for a couple of years and then being able to see that it seems like we always go back to a couple of the same themes. Um, the one that I hear a lot is, um, “Did I cause this?” And so we do some debunking about that. Um, and the very short version is no. You know, parents, loved ones didn't cause it.
Dr. Linda Nelson: [overlapping] That’s right.
Dr. Emily Wacker: It's more complicated than that. Um, another one that we hear a lot is, um…either if parents are going to be visiting their loved one in a higher level of care, or if their loved one has just been diagnosed and is in the outpatient level, they have all of this fear about, “How do I say the right thing so that I don't trigger them and make it worse?” Um, and I'll be curious Diane's thoughts on this as well. But the stance I always take is, you're going to trigger your loved one and they're going to get through it. And, um, life is really triggering. And especially once you're not on the third floor in higher level of care anymore, you're…you're back in the real world, life is triggering. And so what better learning experience than to maybe have a loved one say something really triggering, and the two of you get to kind of repair that, and…and work through that? And so I often just tell…I tell support people, “Just as long as you are not violating a boundary—which means you're, you know, blatantly disrespecting your loved one. If you are doing your best, and you trigger them, that's okay. We'll, we'll get through it. And part of recovery is kind of learning that interpersonal repair and skill.” Um, and so…and I think that can…that sends a little bit of relief to loved ones of like, “Okay, I don't have to carry this weight of like never triggering them.” But, um, there's someone in support group right now who…he tells his loved one, “You know, we're learning every day too. And so we're not always going to get it right, but we have your back no matter what.” And I just think that's so beautiful.
Dr. Linda Nelson: Diane, I would love to get your input on, you know, as you experienced this loss of your daughter and this beautiful commitment that you have made to kind of continue her legacy, to continue the conversation, and to just grow awareness and education around eating disorders, help me know how you…how you came to that decision. How it, it kind of evolved as you experienced the loss of Brooke and continue to stay committed to the healing of eating disorders?
Diane: When I first started support group, I was talking to Emily, and Heather, and Carrie at Melrose and said, “I'm their worst nightmare as a person who goes to the support…you know, who is participating in support group.” Um, a lot of the parents over time realize that I lost a daughter, but I'm…I'm really the parent's worst nightmare. And you look at it that way and, um, for me it can work one of two ways. Um, my presence there is to let them know the importance of the commitment to their loved one to do everything you can and support them so that you are not in the club that I belong to. Um, I didn't choose to be a member of this club. But, being a member of it, um, I want to be a…I want to be there for others so that they know how important it is to take this seriously. To give it all you can. To ask the questions. To tell your loved one, “We don't know what we're doing, but we're gonna, you know, we're going to work through it.And we will be there for you.” And so I had shared that with Emily when I first came on, because at that point, I didn't have one person to support. It was…I felt like I've walked the walk, um, and my walk did not end well. But I need to let them know that this is part of this eating disorder and how devastating it can be to everyone. As far as what I've gone on to for Brooke, um, before I even had her funeral, I had reached out to Melrose, um, because I wanted to do something in her memory. Um, and Heather so graciously said “There's a foundation for…Melrose Foundation.” And so it…it segued in beautifully. Um. I didn't need flowers. I didn't need this after she died. I wanted any contributions for, at her funeral, to go to Melrose. And so with that, um, they helped me, um, through the Park Nicollet Foundation at that point, um, form her fund. And the goal of her fund is to carry on her legacy, because Brooke is one who was very empathetic towards others. Always was putting someone else ahead of her, being somebody else's cheerleader. Um, even at Melrose, being somebody else's cheerleader, um, in group because they got to know each other. Because you kind of have your appointments at the same time every day of the week, so you get to know the people that are out in the waiting room. And you would cheer them on as well. We designed her fund to hit three target areas. Um, the first target area would be for patients, to give them the ability to have the funds…able to have them reach needs such as food, gas money to get to appointments, clothing for during their restoration times. A lot of them, their clothes don't fit or their clothes are too big, because they hid in their clothes, and you need to shed that part of your life. To have them housing, or basically just give them funds so that their living expenses can be met while they stop being able to earn a living to attend their lifesaving meetings. So that is, you know, probably Brooke's number one focus is others, making sure that they can get to their appointments. Another key point for me was the education of those that are taking care of the patients there.So that the therapists, the clinicians, anybody that works with them has the ability to continue their training. So that they can learn about these different types of eating disorders with all the little idiosyncrasies that every one of them has that makes that one…You know, these are the characteristics of anorexia. These are how we treat trauma-based patients. They need to be handled differently. Um, but they can't do that unless they learn the newest, the latest, the greatest, up-to-date techniques. And conferences, education are the way they learn. And then the third is for the support group—for the parents, the loved ones, the caregivers, um, of individuals that are suffering this disease.
Dr. Linda Nelson: This beautiful fund, and it is Brooke Margaret Dunning Fund. And just what a beautiful description, the support that Brooke continues to provide.
Diane: Absolutely. I mean—
Dr. Linda Nelson: [overlapping] Oh, it's beautiful, Diane.
Diane: [overlapping] That—
[pause]
Dr. Linda Nelson: Her legacy.
Diane: That is her legacy.
Dr. Linda Nelson: Support.
Dr. Emily Wacker: And your legacy, Diane. I've always witnessed you as this person who—you went through the unimaginable, right? Like, you lost a child, and you have, of course, anyone who goes through that, you have emotions about that. You have the pain, the grief, the sadness, the anger, and that's all really important, and we need to feel that. And I always saw Diane as this person who, who took that emotion and put it in this direction of, “Okay, and how am I going to help other people? How am I going to take this pain, this anger, and use it in a direction that, that works for me and works for other people?” And it's just, it's been really beautiful to…to witness that and, and to know that our support group sort of exists and gets to continue because of that. So, thank you.
Dr. Linda Nelson: It's a beautiful gift, yeah. You know, we've talked a lot today about just that significance of importance around support. You know, as Emily mentioned, you know, also then talking about just the difficulty of loss and grief. And as we close our conversation today, is there anything that either of you would like to say to our listeners that we haven't mentioned yet? I'll start with Emily.
Emily: Yeah. One thing I was, I was thinking about when, um, hearing Diane share her story is…I also don't want people to…So when we think about, um, death from an eating disorder, what the research shows is there's two primary, um, reasons that that happens. So there is the effects of malnutrition and what we saw in Brooke's case, of organ failure. But the other most common cause of, um, death and eating disorders is suicide.And so I, I don't want that to get lost here.That if someone is listening, and they're saying, “Well, my loved one doesn't have anorexia. Or they're not malnourished.Like, they're not as at-risk.”They absolutely are. And um, I…I just don't…don't want to lose that piece too.
Dr. Linda Nelson: Absolutely. Again, it speaks to the kind of multifaceted complexity of the disorder. And the—I think one of the superpowers of Melrose is that integration of all these different care providers that we have. And as Diane and Emily work—and I think each of us work—to kind of create a community of safety, that we talk about things that maybe other people never talk about. We hold emotion that other people might want to avoid. And you're going to heal here. And so I think that…I'm going to get all choked up, but it's just the straight up truth. And so I'm so glad that you bring that up. They are serious. That’s why we're having these conversations. And you absolutely need to talk about them and can heal. Yeah.
Dr. Emily Wacker: Because eating disorders look so different across the spectrum of bodies and people. And just because it isn't sort of that classic picture of what we, sort of, used to see in the media of someone with anorexia, doesn't mean that your loved one isn't, you know, significantly at risk and needs just as much support.
Dr. Linda Nelson: Absolutely.
Dr. Emily Wacker: I blinked back tears a couple times today, too.
Dr. Linda Nelson: [overlapping] I know.
Dr. Emily Wacker: This was…
Dr. Linda Nelson: It's a really important conversation. And so, as our wise final word, I'm going to go to Diane and just ask: Through all of your wisdom, is there anything that we haven't touched on today that you'd like to say?
Diane: Just the importance of being willing to have a conversation, um, about mental illness. It needs to come to the forefront of discussions today. I think people's minds kind of go in a hundred different directions, because it's not one definition as to what mental illness is. It encompasses so many different aspects of people’s lives. So it is being more talked about. It is being more brought to the front. But be willing to discuss and verbalize, like so many of the parents say on that first night, “I am here to support their diagnoses.” And it's like, once those words come from your lips, they're real, and you have to face it. Be willing to face the good, the bad, and the ugly for, um, the overall good of your loved one.
Dr. Linda Nelson: It's perfectly said. It's our commitment here through the podcast and at Melrose: The more we talk about it, the less stigma there is. And so these conversations, like the one we had today, becomes part of ending the stigma. Diane and Emily, man, I just appreciate you both and am deeply grateful for having this conversation with me. 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.