Guest Host: Susan Page

About 24 million Americans suffer from eating disorders. They are among the most difficult psychiatric conditions to treat and have higher mortality rates than most other forms of mental illness. Clare and Elena Dunkle know these statistics well. This mother and daughter pair has just released companion memoirs, documenting Elena’s struggle with anorexia nervosa. Written for young adults, “Elena Vanishing” traces the story as Elena moves in and out of treatment, her disease threatening her life. “Hope and Other Luxuries” recounts the same events from the perspective of a mother, desperately battling for the health of her child. We hear their stories and more about the disease from an expert.

Guests

  • Clare Dunkle former librarian and award-winning children’s novelist. She is the co-author of “Elena Vanishing: A Memoir” and author of “Hope and Other Luxuries: A Mother’s Life with a Daughter’s Anorexia.”
  • Dr. Angela Guarda associate professor of psychiatry and the director of the Eating Disorders Program at The Johns Hopkins Hospital
  • Elena Dunkle co-author of “Elena Vanishing: A Memoir”

Featured Excerpts

Elena and Clare Dunkle have both written about Elena’s battle with anorexia. Here are parts of their stories.

Elena and Clare Dunkle

Transcript

  • 11:06:54

    MS. SUSAN PAGEThanks for joining us. I'm Susan Page of USA Today sitting in for Diane Rehm. She'll be back next week. At 17, Elena Dunkle became locked in a life and death struggle with anorexia. Her mother, Clare, waged her own battle to hold onto her daughter even as Elena seemed to physically and mentally disappear before her eyes. Now the two women each have written memoirs about their experiences.

  • 11:07:21

    MS. SUSAN PAGEIt is the story of a family shattered by an eating disorder fighting to rebuild. Joining me in the studio, Clare and Elena Dunkle and here to offer a broader perspective on diagnosing and treating eating disorders is Dr. Angela Guarda of the Johns Hopkins hospital. Welcome to "The Diane Rehm Show."

  • 11:07:40

    DR. ANGELA GUARDAPleasure to be here. Thank you.

  • 11:07:42

    PAGEWe're gonna invite our listeners to join our conversation later in this hour. You can call our toll-free number. It's 1-800-433-8850. You can always send us an email to drshow@wamu.org or find us on Facebook or Twitter. Well, we're so glad to have you here. Elena, let's start with you. You've written this new book called "Elena Vanishing: A Memoir." Can you read just briefly from the beginning of the book, from where it opens?

  • 11:08:12

    MS. ELENA DUNKLEOf course. "I wake up in a panic, an acid churns in my stomach. A nurse has walked into my hospital room. I was asleep. How long was I asleep? How long has it been since I last reached for the makeup bag under my pillow? Does the nurse see a girl with a bright future ahead of her or does he see a sweaty tear-stained mess?

  • 11:08:34

    MS. ELENA DUNKLEAs it turns out, I don't need to worry. All the nurse sees is my lunch tray. You didn't eat any of this, he says. You didn't even unwrap it. I feel my face settle into a polite neutral expression, forehead smooth and lips curved slightly upward, and I hear myself speak in the voice I save for strangers, slightly higher and more childlike than my normal voice with a gentle lilt. People like that voice.

  • 11:08:56

    MS. ELENA DUNKLEThey relax and smile when they hear it. I'm sorry, I say, I fell asleep. So if I leave it, will you eat it now? No, there's no way I can force that stuff down. This morning, I had three bites of pudding and I'm still full. At the thought of more food, the familiar pains knife through me, but if I say that, I know what he'll think so I purse my lips and arrange my face into a thoughtful expression.

  • 11:09:18

    MS. ELENA DUNKLEI don't know, I say. I'm still sleepy. Maybe later when I wake up again. As soon as the nurse is out of sight, I double up in agony, clinching my teeth to keep from groaning out loud. If I make a sound, I know he'll hear me and come rushing back to help and I don't want anyone's help. Anger and bewilderment are forms of admiration. It's pity I can't stand.

  • 11:09:39

    MS. ELENA DUNKLEPity wraps you up inside your problem until the problem is all people see. Did you hear what happened to her, they whisper behind your back. Can you just imagine? No wonder. And when you do something amazing, nobody's jealous anymore. They hug you and cry and call you brave when what they really mean by that is damaged. So I lie still and take deep quiet breaths.

  • 11:09:57

    MS. ELENA DUNKLEPain doesn't bother me. I'm not afraid. I'm used to living with pain. He saw you looking like a mess, warns the voice in my head. You weren't careful enough. You let down your guard. That's my conscience. We all have one. Mine never lets me settle for second best. There's no place in life for losers. So even though the pain in my stomach still has me clenching my teeth in agony, I pull the little makeup bag out from under my pillow and touch up my face in the compact mirror.

  • 11:10:22

    MS. ELENA DUNKLEPerfection. That's what I want people to see when they look at me. Nothing but perfection. Anger is honest. Hatred is a backhanded compliment. Envy is the best gift of all. But let them turn you into a victim and you're labeled for life. Pity is the sea you drown in."

  • 11:10:39

    PAGEThis is Elena Dunkle reading from her new book called "Elena Vanishing: A Memoir." And in this passage, you're 17 years old. It's the first of three hospitalizations that you will have. And tell us what you realize is happening to you as you read this passage. What is going on with you?

  • 11:10:58

    DUNKLEAt that moment, what was really going on with me was, I think, being faced for the first time with the realization that a behavior that I had been engaging in to help me cope, it was my very, very safe and secure defense mechanism and it was the first time that it was being brought out into the light for my family to really be made aware of it, for official, I guess you could say, authoritative figures to begin to get involved.

  • 11:11:23

    DUNKLEAnd it was almost like that safe space and environment I had created for myself, which was a very deadly environment to be in was being somehow violated. And so that was really where my mind was at when I was in that first hospital stay was how do I get back to the normal, which was, for me, being able to engage in my disorder without interference and not allow anyone to really delve into why I had become an anorexic and escape where I was at, I guess.

  • 11:11:54

    PAGEYou wanted to be perfect?

  • 11:11:56

    DUNKLEYes. I think it was less a form of perfection in a superficial sense, but perfection in the way of achieving everything that I had wanted to set out for my future, to be able to go to college and, you know, be a valedictorian and achieve all the goals that my parents, you know, had seemed to set out for me and that I was setting out for myself. That ultimate success in life is what I really wanted to accomplish and I felt that I was being held back at that point.

  • 11:12:25

    PAGEClare Dunkle, you're her mom. Is it hard for you to hear a passage like that?

  • 11:12:28

    MS. CLARE DUNKLEOh, absolutely. It's very hard for me to listen to that.

  • 11:12:33

    PAGEAnd what do you recognize? What do you hear when she reads it? You must remember that time all too clearly.

  • 11:12:40

    DUNKLEI do, I do. For me, it was -- it's so hard because Elena had been very happy as a child, very bubbly, very dramatic. And she suffered trauma at the age of 13, right before her 14th birthday, and I then saw her turn toward that pride, that cold, joyless search for perfection and I didn't understand why. It wasn't until later that we began to find the causes of the illness.

  • 11:13:19

    DUNKLEBut it was very painful for me to see her turn away from happiness.

  • 11:13:26

    PAGEWhat was the trauma that she suffered at 13?

  • 11:13:30

    DUNKLEElena was raped at a party at 13.

  • 11:13:34

    PAGEAnd Elena, do you see that as the beginning of the eating disorder that you then struggled with?

  • 11:13:40

    DUNKLEI think now looking back, I can definitely be able to draw a link between that violation, you know, that was kind of the beginning of your sexual identity when you hit puberty and to have it begin on a note like that, which was very terrifying and horrifying and not how I had expected it to be, I think being able to, you know, I had always been a little bit picky with food and had always been able to use food as kind of a control mechanism, which we talk about in the book, you know, determining how I wanted my behavior at the table to go.

  • 11:14:13

    DUNKLEBut being in an all girls' boarding school really helped, after that event, when I was very isolated, you know. And when you go through a trauma, you instinctively kind of lose your appetite after something like that. And so being around other girls who exhibited behaviors, I began to emulate that and really then, you know, for me, it wasn't that kind of superficial search for attractiveness, but instead it's almost -- I guess you could equate it to almost opiate abuse or alcohol abuse, where you do reach a point through starvation where you are so -- you have such a low energy and you're so numbed out that you can't go below surface emotions.

  • 11:14:51

    DUNKLEAnd so I didn't really have to even take into account what had happened because my mind was so blanked out at that point.

  • 11:14:59

    PAGEDr. Angela Guarda, you are director of the eating disorders program at the Johns Hopkins Hospital. Is this a story that's familiar to you when you think about people you have treated with eating disorders?

  • 11:15:09

    GUARDAYes, actually, it's a fairly common story. And I think, Elena, you made a number of very important points, really, in describing how this developed. The way we think about the causes of eating disorders now is that they're clearly multi-factorial, there's many causes. And in thinking about them, it's easiest to divide them into those that predispose to anorexia, those that precipitate the onset of anorexia and those that maintain them.

  • 11:15:36

    GUARDAAnd we know there's a genetic predisposition to anorexia nervosa. There seems to be a high rate of anxiety disorders, both in patients and in their family members and that likely underlies some of the genetic vulnerability. But something happens at time of onset. And Elena's, you know, given us a clear traumatic event and it can be something like that, but she's also noted that when after the trauma she lost her appetite and started losing weight and we know that the more mundane causes of anorexia are anything that causes weight loss, often just a diet, often a GI illness in which you get the flu or gastroenteritis and you lose a first five pounds.

  • 11:16:17

    GUARDAAnd after that, elements come into play that maintain starvation and they are both the physiological consequences of weight loss and the psychological consequences so that, in a sense, over time, the disorder becomes more and more driven and motivated and you do it because you did it yesterday, no longer necessarily because of the actual inciting events in some way, although it is important, obviously, to explore those eventually in treatment.

  • 11:16:46

    PAGEAnd maybe we should take just a step back, just briefly tell us what anorexia is, exactly.

  • 11:16:53

    GUARDAAnorexia nervosa is a syndrome of self starvation. It is a common disorder in young adults and adolescents. It is much more prevalent in girls and young women, but it also does occur in boys, about 10 percent of cases are in males. And it usually has onset around the time of puberty so really around the time Elena's describing, the early teens. And we know that events that probably contribute to its onset can include, in girls, we think estrogen may play a facilitatory role if you're predisposed, so some of the changes of puberty probably facilitate onset.

  • 11:17:33

    GUARDADieting and trauma or stress can clearly play a role. So it's really a combination of factors that cause the onset, but in the long run, it becomes a self sustaining condition.

  • 11:17:48

    PAGEShelly left a comment on Facebook for us saying, "Mine was about appearance or control. It was about grieving." And from Stacy, a comment, "I never had a traumatic event, but it was still about control. One thing, anorexia is not like getting the flu. Even after you recover, it is still with you for the rest of your life and it can creep back in."

  • 11:18:07

    PAGEWe're gonna take a short break and then we'll be back for your calls and questions and for more of our conversation. Stay with us.

  • 11:20:00

    PAGEWelcome back. I'm Susan Page of USA Today, sitting in for Diane Rehm. And with me in the studio this hour, Elena Dunkle, she's the co-author of "Elena Vanishing: A Memoir," which writes - she writes about her experience with anorexia. And her mother, Clare Dunkle, she's a librarian and award-winning children’s novelist. She's also the co-author of "Elena Vanishing," and she wrote another book, "Hope and Other Luxuries: A Mother’s Life with a Daughter’s Anorexia." And also joining us, Dr. Angela Guarda, she's an associate professor of psychiatry and director of the Eating Disorders Program at Johns Hopkins Hospital.

  • 11:20:40

    PAGEWell, Elena, we started with you reading a passage from the opening of your book, when you're 17. You've just been hospitalized. That hospitalization did not work for you. You had a long struggle ahead to get control of your disorder. Tell us what finally enabled you to kind of address it in a serious way.

  • 11:21:00

    DUNKLEI think for me the pivotal moment of realization that my eating disorder wasn't just a private thing that affected myself, but my family, was with the miscarriage, where I did lose my child. And I think it was the first time where I didn't feel that people around me were speaking in metaphors when they were saying how much my disorder was affecting them. I was able to link losing that child directly to the actions that I had engaged in that had caused my body to be unable to support a pregnancy, and so that was a very strong moment for me of realization that my actions do affect other lives and directly lives that I hopefully will be able to create in the future, and that was a big moment where I really did begin to turn and try and reach for help and went through a lot of the anger and really start to work on the trauma and the process of grief and be able to grow at that point.

  • 11:22:00

    PAGEYou know, we had a listener leave a comment on Facebook saying it's not like the flu that you get over. Do you feel that way? Is it something you end up dealing with forever? Do you still end up dealing with it?

  • 11:22:12

    DUNKLEI personally still am dealing with it. I see it as something -- when you engage in it for such a long time, it's your habits, and so it's very hard to have a fear of something that is so necessary for life. Food has to be a part of your life multiple times a day, and when that's something that you've been trying to remove, it's a very long process of bringing that back into your life in a very healthy way, not falling into other, different types of disorders where I did have a long experience with, you know, going into a more bulimic mindset or going in to engaging in over-exercising, and really finding a healthy balance took a lot of time and work with nutritionists and therapists and treatment centers.

  • 11:22:57

    DUNKLEAnd so I found the best way for me was just being hyper-vigilant of the fact that I still am in that recovery process and keeping my food journals, keeping my meal plans, staying on top of things with my therapists and nutritionists and having a good support network where, you know, my family will be able to tell if I'm starting to kind of slip back into a negative mindset.

  • 11:23:19

    DUNKLEAnd I do hope for the day where I will be able to just engage in a normal, healthy life, but at this point I am still working towards that.

  • 11:23:26

    PAGEWell, Dr. Guarda, it sounds a little like alcoholics, who never say they are a former alcoholic. They always say they're a recovering alcoholic. Or people who deal with other problems, where you're never really over them, you learn to manage them. Is that the case with some of these eating disorders?

  • 11:23:40

    GUARDAI would say yes, but not necessarily in the sense that I do believe there is true recovery and that all patients are capable of recovery. But it does remain your Achilles' heel, meaning that you are at risk of relapsing at some point if you're under stress later in life. But certainly we do see many patients recover fully, who don't have over-preoccupation with food and weight once they're in recovery.

  • 11:24:07

    PAGESo Clare, this mess had to be such a hard struggle not only for Elena but also for you. And I wonder if you would just read a passage from your book. Your book is titled "Hope and Other Luxuries: A Mother’s Life with a Daughter’s Anorexia."

  • 11:24:21

    DUNKLEI'm happy to. "The days continued to creep by. Elena stayed in bed. When do your classes start, I asked, standing at the door of her bedroom. Next week, whispered the mound beneath the covers. No, they started last week, I told her. I looked it up. The ethics professor sent out a note. She had an accident, we're starting late. Okay, well, what about your other classes? The Tuesday-Thursday classes start this Thursday. I pondered these statements. Could they really be true? No, they couldn't possibly be true. But then again if they weren't true, that meant Elena had missed the first day of school. Could that possibly be true?

  • 11:25:04

    DUNKLEThis was the girl who, from grade one, couldn't wait to get home each day to start on her schoolwork. This was the girl who read ahead in her textbooks for fun. This was the girl who rewrote her notes in five different colors of ink. I still had a tin box with thousands of her handmade flashcards in it, Latin flashcards with German on the back. Elena missing the first day of school? How could that even happen?

  • 11:25:32

    DUNKLEThat night I lay awake in bed, almost frantic with worry. The semester hadn't helped. Elena hadn't recharged. She was getting weaker and thinner by the day. When was the last time I had seen Elena eat? I couldn't even remember. Like a cold weight settling on my chest, reality sank in. Elena hadn't gotten up for the first week of class. That meant she wasn't going to get up. She didn't intend to get up again, ever.

  • 11:26:01

    DUNKLEI lay there in the dark, and I prayed, and I pondered, and I forced myself to face the facts. Elena was dying. Elena was killing herself, and there was nothing I could do to make her stop."

  • 11:26:15

    PAGEThat's Clare Dunkle, reading from her book, it's called "Hope and Other Luxuries: A Mother’s Life with a Daughter’s Anorexia." We can hear how emotional this is even now for you to read that passage. But of course you did have something to do. There was something you could do about it. Tell us about your role in your daughter's recovery.

  • 11:26:33

    DUNKLEI tried to stay as active as I could in any way I could think of to help, and over the years that changed, whether it was talking to her doctors, questioning her doctors, whether it was calling her insurance companies. You know, there was a certain point at which I said to myself, when Elena is fully recovered, and people ask, I'll say Elena recovered, and I handled her insurance because it becomes an enormous, enormous part of this, getting the insurance companies to pay, getting them to approve care. I spent hours and hours at times on the phone.

  • 11:27:20

    PAGEWell, Dr. Guarda, tell us, what can families do? I mean, it would be a parents' nightmare to have a child with a serious disorder. What can families do if there's someone in their family who's suffering from an eating disorder like anorexia?

  • 11:27:34

    GUARDAAnorexia nervosa is really a family illness in the sense that everyone is affected by it. And we know that families are an integral part of the treatment team. So we always want to involve families in care. Some of the best treatment evidence supports the involvement of families in the treatment of young adults, and adolescents especially, with anorexia nervosa. And really what I would encourage parents to do is reach out and find a professional with the right background.

  • 11:28:06

    GUARDALook for a treatment center with known expertise and help your daughter get the treatment she needs because the problem is that your daughter is likely to be of two minds. She may recognize the problem, but be very reluctant to seek the right kind of treatment, essentially treatment that will help restore her weight and normalize her eating behavior as the first step.

  • 11:28:30

    PAGEBut what about you, Elena? Did you recognize that there was something wrong, or did you think that other people were making too much of something?

  • 11:28:39

    DUNKLEI think it was a combination of both. I think, you know, the whole idea of kind of having a body dysmorphic mindset really was there for me, where even with doctors all standing around and telling me and diagnosing me and being accepted into treatment centers -- I remember the first time I went into a treatment center, I was sure that I wouldn't be accepted because there was no way my weight would allow me to be there.

  • 11:29:03

    DUNKLEAnd so it did take a long time to be able to accept that diagnosis, almost, and like everyone has been saying, there is that mindset of you do realize you have a disorder, but then it's almost like you have to prove yourself to have that disorder. And so there was quite a bit of time where once I received that diagnosis, I did spiral downward into a more severe state so that almost -- I remember one of my friends who was at the treatment center with me saying that she had to get ready to go to the treatment center by losing weight so that she wouldn't be the biggest one there.

  • 11:29:36

    DUNKLEAnd that is a fear when you're surrounded by other people who are similar to you. You know how judgmental you are, so you expect them to be that judgmental of you. And so it is a very fine line of reaching a point where you do have to kind of, you know, separate yourself from the people around you who suffer that disorder and work on treatment for yourself. And so it did take me quite a few years.

  • 11:29:57

    PAGEWe have some listeners who have had their own experiences with these disorders. Let's go to Craig, who's calling us from Raleigh, North Carolina. Craig, thanks for joining us on "The Diane Rehm Show."

  • 11:30:08

    CRAIGThank you so much. And listening to you -- well, I think first of all, Elena, I'm so glad, so glad that you're there. And Clare, I know exactly what you've been through. Our daughter, who is 30 now and with us and doing well, went through this when she was 17 and 18. And so what I wanted to share, just a few things and reinforce. We never blamed our daughter. We never blamed ourselves. We acknowledged the problem right away, and we got help. And we got her into treatment right away.

  • 11:30:46

    CRAIGAnd we think she decided to heal herself because she only went through -- she went through one hospitalization. Her therapist said that this will be the first of many, but it wasn't. The fights with the insurance companies were horrific, but we fought, and you should never give up. I think the hardest thing was also recognizing that there are not a lot of parent advocate groups out there. We never found one in our area of Raleigh, and this is -- it's one of the hardest things to go through. Thank you very much.

  • 11:31:23

    PAGECraig, thanks so much for your call. We can tell that was a hard conversation for you to have. We really are so glad that your daughter is doing well now. Any comments, Dr. Guarda?

  • 11:31:32

    GUARDAYeah, I think I'd like to just chime in and make a couple important points for parents who are in the audience that the caller mentioned that there are some organizations that really can provide support to families, and it's certainly important to mention them, I think, and they include the National Eating Disorders Association, which has very useful tools, toolkits on its website and advice on finding treatment centers or on negotiating with insurance.

  • 11:32:00

    GUARDAAnother site is FEAST, that's spelled F-E-A-S-T, all capitalized, and Maudsley.org (sp?). So there are three great resources for parents. The other important point is yes, you're right, parents must understand that this is not a disorder they caused, that we do not have evidence at this time that parents cause eating disorders. We think that the vulnerability within the family is genetic, not learned, but that parents play an integral part in helping patients get well, and they need advice as to how to do that from professionals.

  • 11:32:30

    PAGEClare, what was helpful for you?

  • 11:32:34

    DUNKLEI just wanted to say first, Craig, thank you so much for calling. That’s -- it makes me feel better to have that call. I really appreciate that support. And then the question again?

  • 11:32:47

    PAGEWhat was helpful for you?

  • 11:32:51

    DUNKLEYou know, just this -- for me, like our caller, I didn't find a lot of support immediately in my area. I didn't really reach out to friends. Just within our own family, we are a family of fighters. We tackle problems rather than putting them off. And I, too, didn't spend a lot of time agonizing over what had gone wrong. It isn't that I didn't worry that I had done things, I did worry that I had maybe done things to cause problems, but I just didn't feel that I could waste the time. I needed to get in there and work.

  • 11:33:34

    PAGEI'm Susan Page, and you're listening to "The Diane Rehm Show." We're taking your calls, 800-433-8850. Let's talk to Amy, she's calling us from Olney, Maryland. Amy, hi.

  • 11:33:45

    AMYHi, Susan, thank you for taking my call. I have a question for the doctors from Hopkins, but I thank all of you for having this show. It is so very important. I am 52 years old. I first had my first bout with anorexia when I was 16. At that point in time, there was very little treatment available. There was really nothing. So I struggled with my family and on my own. I went through some group counseling later on, when I had another bout in my late 20s, and at that point, as I got into my 30s, still struggling, doing some outpatient treatment.

  • 11:34:37

    AMYBut at one point, my therapist said to me if you don't beat this by age 40, you'll have it for life. I'm fairly stable now, but the mindset is still there. I slip into it in times of stress, not to a point where it's life-threatening, however, and I'm pretty much on my own now.

  • 11:34:57

    AMYI fear that this therapist was right. Why is this so very, very difficult to treat? And is there a point to where you just say okay, this person is just going to have to life with this, it's just, it's too ingrained by, you know, age 50 or 52? I'd like to year your comments.

  • 11:35:21

    PAGEAmy, thanks so much for your call, and we respect your struggle in handling this. So Dr. Guarda, what would you say?

  • 11:35:30

    GUARDAI would say Amy, you realize that we have seen cases in their 70s who have had chronic anorexia all their life fully recover. So I absolutely don't agree that after a certain amount of time you are destined to live with the condition. And I do know that treatment is likely to help. The question also is what kind of treatment you have had in the past. And, you know, if something didn't work, it's important to look for an alternative because -- and there are -- at different points in life, you may be more or less open to change.

  • 11:36:05

    GUARDAIn fact, I would argue that we have often seen that older patients are more motivated to get well because they have suffered more consequences of the disorder and feel more engaged in the treatment process. The reality is that treatment is uncomfortable. You're trying to change something you're ambivalent about changing, and that requires hard work and persistence and the support of professionals.

  • 11:36:30

    GUARDABut if patients can get to a normal weight and maintain normal eating for six months, what we see is that a lot of the cognitive elements of the disorder, the fear of fatness and the drive to lose weight or to restrain your calorie intake, slowly fades, just like an addiction. Craving tends to go away a lot - significantly after you stop abusing a substance. Here we know that a lot of the thoughts associated with the anorexia and the drive to return to old behaviors take months beyond weight restoration in order to extinguish. So I would encourage you to seek treatment again.

  • 11:37:06

    PAGEYou know, it's interesting, she's - Amy is 52 and struggling with this. We also got a comment on Facebook from Beth, and she writes, "I wish eating disorders and disordered eating in midlife would be covered. It's not just a young person's problem." We're going to take a short break, and when we come back, we'll continue our conversation. We'll go back to the phones and take some of your calls and questions. Stay with us.

  • 11:40:02

    PAGEWelcome back. I'm Susan Page of USA Today, sitting in for Diane Rehm. And we're talking in the studio this hour with Dr. Angela Guarda. She's an Associate Professor of Psychiatry and Director of the Eating Disorders Program at Johns Hopkins Hospital. And we have a mother and daughter pair who have dealt with the issue of anorexia in their own lives. Elena Dunkle is the co-author of "Elena Vanishing," a memoir about her experience with anorexia. And her mom, Clare Dunkle, who has also written a book, "Hope and Other Luxuries: A Mother's Life With a Daughter's Anorexia."

  • 11:40:35

    PAGEHere's an email we got from Cape Cod. This emailer writes, my 14-year-old daughter just got diagnosed and everyone says, it's not my fault. I don't believe them and cannot get rid of the guilt that I somehow helped this happen. Clare, did you feel that way?

  • 11:40:53

    DUNKLEI did. I think we mothers are very quick to jump in and try to take the guilt, just generally, because we are the ones who want to try to move things toward health, and if someone's gonna need to go out there and take the bullet, we're the first ones to want to take that bullet. In my case, that feeling was compounded by the fact that when Elena first got diagnosed a number of years ago, the doctors around her believed an old theory that it is, in fact, the family that can cause the anorexia.

  • 11:41:32

    DUNKLEThat theory has since been discredited, but I was treated with quite a bit of hostility. Information was not shared with me and later, I had to go through the experience of Elena telling me that she sat through group therapy sessions in which the therapist told the entire room full of patients that their families had produced their disorder. That was devastating for me to hear and I was furious. But I do want to just say that guilt isn't necessary and it isn't really helpful. I did seek therapy myself, at a certain point in this process, to deal with my own issues, but it's -- I did realize that I was carrying a load of shame.

  • 11:42:28

    DUNKLEAnd I realized that that was not bringing me to a healthy place and therefore, wasn't helping my family and my daughter reach a healthy place either.

  • 11:42:37

    PAGEElena, did you feel it was your mother's fault or your family's fault?

  • 11:42:41

    DUNKLEI didn't feel that whatsoever. In fact, you know, our family is very communicative and we're a very open family. You know, we grew up with no TV in the house and a lot of books around us. And so, I did have a family that was always at the ready to come and help. And there was never any real stress placed on eating, whether it was too healthy or too unhealthy. Or any way about the way we looked. You know, like my mother says in her books, how we never had any type of Barbie dolls or any of that stereotypical things that come to mind when you think about how a child's eating behaviors are kind of shaped when they're younger.

  • 11:43:18

    DUNKLEAnd so, I never ever really put that link together. I think the only link I really associated when it came to the behaviors around me was really being at the boarding school, being surrounded by all girls. That was an area where I was able to develop a lot of negative eating habits. But like we say in the book, and we said before, if you are in an anorexic mindset, you can find negative behaviors and you can seek out tips and tricks as some people call them to help yourself lose weight in anything.

  • 11:43:50

    DUNKLEI remember looking in Encyclopedias or reading memoirs from people or any types of books and TV shows. If you're looking for something negative, you'll find it. But I never once thought that I received it from my parents.

  • 11:44:02

    PAGESo, Dr. Angela Guarda, tell us, what was the theory, the previous theory that parents or the family members were somehow causing this problem, and how is it, you say it's now no longer considered to be the case.

  • 11:44:16

    GUARDAYeah, in the 70s, certainly, the thought was that there was, for instance, such a thing as an anorexigenic mother. Controlling, hovering, mom. And that that character, perhaps, was causing anorexia to develop in a daughter. It's pretty clear that there were all kinds of families in which this disorder develops. And that it has nothing to do with parenting style. There was an interesting study that compared the behavior in families -- this is an old study now, but the behavior in families of children with cystic fibrosis, who have trouble eating, to the behavior of families with anorexia at the dinner meal.

  • 11:44:59

    GUARDAAnd they behave very similarly, because, of course, both conditions lead to concern about your child starving. So, of course, you do see a lot of emotion and upset in families of a sick child. But that's not what caused the anorexia. We really think that these disorders do run in families, but we think that the primary reason that happens is genetic predisposition, not learned behavior and not poor parenting. But what parents do once the disorder occurs, that definitely does influence odds of recovery. And as I said earlier, parents are a really integral part of the treatment team and need help to figure out how to assist their son or daughter in working towards recovery.

  • 11:45:44

    PAGELet's talk to Matt. He's calling us from here in Washington, D.C. Hi Matt.

  • 11:45:48

    MATTHi Susan. How are you?

  • 11:45:49

    PAGEGood.

  • 11:45:51

    MATTWe have a daughter who is about to turn 13. A couple months ago, she lost about 15 pounds over a two month period. We have since gotten her back up to a healthy weight. She's in therapy. She's seeing a dietician. She is on an SSRI, which seems to have lifted her mood to a certain degree, but the anxiety around eating has, if anything, gotten worse, since she's gotten back up to weight and since she's been on the SSRI. We're just looking for some strategies to try to get over that hump.

  • 11:46:24

    PAGEYeah. And tell us, what is an SSRI?

  • 11:46:27

    MATTIt's a Serotonin Re-uptake inhibitor, like Prozac or Lexipro.

  • 11:46:32

    PAGESo, an anti-anxiety drug, really?

  • 11:46:33

    MATTCorrect.

  • 11:46:34

    PAGEYeah. So, let's hear about some strategies. Elena, I wonder if you have any strategies that might be helpful to Matt and his family.

  • 11:46:41

    DUNKLEI think it's very difficult to say because, you know, every anorexic kind of walks the path separately, but I do know that, currently, myself, I could say I'm almost in a similar situation. I did recently start taking my own SSRI and I did -- I also work with a therapist and a dietician and for me, there is almost, the more weight that I gain, the anxiety is heightened. And it, and like we had been speaking earlier about how there is a six month period, really, where you do have to maintain that healthy weight before all those negative, you know, thoughts and those voices and that anxiety starts to lessen. And so I think that the hump will almost, you know, I don't want to speak for everybody, but I think the hump will almost overcome itself.

  • 11:47:25

    DUNKLEAnd I experienced that in treatment centers, where I would be held to a certain weight and maintain that weight and it would be almost like, it would become worse and worse and worse and worse, and then all of a sudden, it would start to get better. And so, it may just be, you know, her feeling that that weight is back on. She's now at a healthy weight. Dealing with that, dealing with having to face something multiple times a day that she really wants to avoid. And that, as time goes on and her cognitive skills come back up, and she is able to kind of replenish her body at a healthy weight, it might just even itself out on its own.

  • 11:48:02

    PAGESo, Dr. Guarda, do you have any tips for Matt and his family to try to deal with their daughter's anxiety around eating?

  • 11:48:09

    GUARDAI think Elena summarized the problem and that is that as you gain weight, you often become more anxious before you become less anxious. And that, really, the key is to continue to help your daughter to eat a wide range of foods and normal meals, to eat what you're eating, at most to give her sometimes a choice of two items that equivalent to choose from. Because it's very difficult when you're in an anorexic mindset to choose what to eat and do it in a balanced way. The tendency is always to be thinking, what has less calories?

  • 11:48:44

    GUARDAAnd one thing that helps, for parents, is to limit choice. To say, give a choice between two items or two restaurants, but not more than that. So, that would be a simple piece of advice. But really, I think this is something that a good Maudsley trained therapist. And Maudsley is the technique that is used to -- that involves family therapy for anorexia nervosa. And it's really based on helping parents to refeed their child. It's now pretty well established that that is the technique that works the best for the most patients. It doesn't always work, but it works in over 70 percent of young patients.

  • 11:49:28

    GUARDAThe longer you have the illness, obviously, the harder it may be for a simple outpatient intervention to be sufficient and sometimes hospitalization will be necessary in those cases to help patients gain weight. But certainly, that would be kind of a straight forward strategy to start with.

  • 11:49:47

    PAGEClare, did you have some thoughts?

  • 11:49:49

    DUNKLENo. I think they both did a fantastic job.

  • 11:49:53

    PAGEAll right, Matt, thanks for your call. And we hope things go well with your daughter. You know, I'm struck by Matt's -- that they seemed to have recognized the problem very quickly when their daughter began to lose weight. How do you know, Dr. Guarda, whether your child is -- has just lost a little weight or whether it's a problem you need to really start to address?

  • 11:50:13

    GUARDAWell, there are a number of behaviors to watch for. In terms of the way your daughter is eating, you're really looking for whether she's excluding calorie dense foods. That means fat, sugar, fried foods and often, under the guise of eating healthy. Becoming vegetarian is very common. However, the way in which your child may be vegetarian is, again, a very low calorie sense of the word. For instance, they're not eating Indian curries or Thai curry. They're eating tofu with no sauce on it. So, you're looking for a restriction in the calorie density of the foods, and also in the repertoire of foods.

  • 11:50:56

    GUARDAPatients are often eating the same thing every day. They may be exercising. The exercise may be simple things like walking upstairs repeatedly or more -- or going to the gym for hours during the day. Elena mentioned that purging and binging can also be seen in anorexia, which not everyone realizes, so certainly leaving and going to the bathroom after each meal, running the water to cover the sound of purging. These are all some of the behaviors that should raise a red flag.

  • 11:51:26

    PAGEClare.

  • 11:51:27

    DUNKLEI would like to echo that comment about vegetarianism, which is a wonderful, healthy lifestyle, but not the way my teenage daughter wanted to bring it into our house, which was simply another way to eliminate a huge category of foods. Additional things that I saw in our household, my daughter would tend to want to take the food with her. Oh, I don't have time. I'll grab that bagel and I'll eat in on the bus. It's important to ask yourself, as a parent, you know, am I watching my child eat? Am I seeing my child eat? Another thing that Elena exhibited was she didn't want to eat out in public anymore.

  • 11:52:11

    DUNKLEShe didn't want to eat in restaurants. She would find excuses not to order or not to participate if it was a group activity at school that involved eating. She would not eat.

  • 11:52:23

    PAGEI'm Susan Page and you're listening to The Diane Rehm Show. You know, we have a lot of callers who are asking about the link between anorexia and female body image in western culture. You know, Elena, you mentioned that you didn't grow up with the Barbie dolls as not a very realistic version of the female body. How big a factor is that, Dr. Guarda, when you look at anorexia and other eating disorders?

  • 11:52:47

    GUARDAWell, this is actually a very important point. I'm glad somebody mentioned it, because all of us have read about the thin beauty ideal in the western media. The emphasis on needing to diet and lose weight, which usually is felt by teens around the time of onset of this disorder. There is one problem with ascribing anorexia to pressure for thinness in western culture. And that is, that unlike obesity, for instance, the rates of which have skyrocketed, because of environmental changes in the way we exercise or eat, there has not been the same kind of an increase in anorexia.

  • 11:53:22

    GUARDAAnd therefore, yes, it's true that the beauty ideal probably increases the risk of dieting, but it has only a slight effect on rates of anorexia. It actually leads to obesity more commonly than to anorexia, because dieting is often followed by binge eating and weight gain. And if you look at teen girls who diet, they're more likely to actually gain weight than develop anorexia. But certainly, it's one of the gateway -- dieting is the most common gateway of entry to anorexia. We can't, however, assume that the media caused this. There is something else that explains why only less than one percent of girls develop the full-fledged syndrome.

  • 11:54:01

    GUARDAAnd that is, probably, this genetic vulnerability. If you have the genes, and you start to diet, because of the thin ideal, perhaps, you are at risk. But if you don't have the genes, you probably are not at the same risk.

  • 11:54:13

    PAGEAre rates of eating disorder in the United States the same as the rates in other western countries? For instance, in Europe?

  • 11:54:19

    GUARDAYes. The rates across the western world are pretty equal. When people have looked for anorexia in the developing world, and there aren't good epidemiological studies, they have been able to find cases. Maybe a slightly lower rate and there certainly is one study in Fiji that has shown that the introduction of western TV increased the rates of eating disorders, although the link is much stronger with bulimia than with anorexia. So that we know that bulimia is more influenced by the thin ideal and pressure for thinness than anorexia is.

  • 11:54:52

    PAGEElena, in your book, you're the narrator, but you often write of this other voice, this voice in your head that almost seemed to be a character on its own. Tell us about that.

  • 11:55:02

    DUNKLEI think it was one of the best ways to highlight how severely critical that internal monologue can be. I think it did definitely develop after the rape and it developed more strongly as the anorexia increased, but it was that very, very judgmental, very, very internal narrative that constantly goes on, which, you know, speaking to people like my therapist, I guess, people without an anorexic diagnosis, they have a constant internal monologue. Everyone does have a normal thought process that goes through, but this one is a very, very demeaning and very rude and very cruel way of looking at yourself and how you're portraying yourself to the world.

  • 11:55:48

    DUNKLEAnd it is a very constant, constant thing. And I think it's -- it also is coupled with the fact that, you know, when it comes to something like alcoholism, when you put down the drink and walk away from it, you don't have to have it a part of your life, but since food is such an integral part of social situations and normal nutrition that you need and you know, dessert and snacks and it's everywhere. And so, if that's something that you're very judgmental about, when it comes to yourself, then you will have that constant harsh critic in your mind going on.

  • 11:56:19

    PAGEClare.

  • 11:56:19

    DUNKLEWhen Elena and I first began to work on her memoir together, I was fascinated by the fact that her internal voice speaks to her in the second person. In my mind, if I trip, I'll say, well, you know, I made a mess of that. But in her mind, it's a you. You know, you did this. You did this. And I found that to be fascinating.

  • 11:56:44

    PAGEAnd what does that say to you, Dr. Guarda?

  • 11:56:45

    GUARDAWell, this experience of being of two minds is very commonly reported by patients. That they have a kind of an anorexic mind and a rational mind. And, in fact, the process of recovery is really helping patients to strengthen the healthy mind and to be able to identify some of the -- and label some of the anorexic thinking and really reframe it in a more positive way. So, that is one of the challenges. The treatment is like a process of conversion, from seeing dieting as the solution to my problems to recognizing it as the problem.

  • 11:57:20

    PAGEDr. Angela Guarda from Johns Hopkins Hospital. And we've also been joined this hour by Elena and Clare Dunkle, a mother and daughter pair who have written about Elena's struggle and the family struggle with dealing with anorexia. We had a lot of great callers. I'm sorry we couldn't have taken more of them. And thank the three of you for joining us this hour on the Diane Rehm Show.

  • 11:57:38

    DUNKLEIt was a pleasure.

  • 11:57:38

    DUNKLEThank you.

  • 11:57:39

    PAGEI'm Susan Page of USA Today, sitting in for Diane Rehm. Thanks for listening.

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