Sandra Knispel: You’re now listening to the UR Quadcast, the official podcast of the University of Rochester. To most of us, eating is pleasurable, but according to estimates, some 30 million Americans suffer at least at some point in their lives from eating disorders, such as anorexia nervosa, bulimia nervosa, or binge eating disorder. For them, food has become the enemy. The simple pleasure has turned into dread. I’m your host, Sandra Knispel, and we’re talking about teen eating disorders today.
Joining me in the studio are two University of Rochester experts, Mary Tantillo, who is a professor of clinical nursing, and she’s also the coauthor of the new book, Understanding Teen Eating Disorders: Warning Signs, Treatment Options, and Stories of Courage. Welcome, Mary.
Mary Tantillo: Thank you for having us.
Sandra Knispel: Our second guest is Dr. Taylor Starr, an assistant professor in the department of pediatrics, and the director of the eating disorder program at Golisano Hospital. Welcome, Taylor.
Taylor Starr: Thank you.
Sandra Knispel: Let’s start, Taylor, with you, immediately. You have—most people have heard of anorexia, which of course is the third most common chronic disease among young people after asthma and type one diabetes. When I read that I was surprised it was so prevalent. If you could start with a quick overview over the most common types of eating disorder, so we know what we’re talking about.
Taylor Starr: Sure. So as you mentioned, restrictive anorexia nervosa, bulimia nervosa, binge-eating disorder, and avoidant–estrictive-food-intake disorder, which we’ll also talk about.
Sandra Knispel: Most people know that anorexia means you basically stop eating, whereas bulimia—if you could just go through them quickly and tell us what they entail.
Taylor Starr: Sure. If we’re talking about restrictive anorexia nervosa, generally people are restricting their energy intake. So if you think about our energy as our nutrition, our food, people are restricting their intake to not meet their requirements to have a healthy weight and for their body to be running physically well. And this can also include over-exercising, so if that increases your energy needs, you’re not going to intake enough to meet those needs.
When we’re talking about bulimia nervosa, we’re talking about people’s eating patterns. So they might eat regularly throughout the day and then they have episodes of what we call binge eating, where they’re sitting an average length of time of about two hours, eating more than someone would typically eat. They’re feeling out of control. And they feel an immense guilt. And when we’re talking about bulimia nervosa, then there’s a compensatory mechanism where with that guilt they feel the urge to get rid of that nutrition by either purging, by vomiting, using laxatives, diuretics, or over-exercising.
When we’re talking about binge eating disorder, people are eating more nutrition than people would typically eat in two hours, and feeling out of control and guilty about it. The difference is they do not have a compensatory mechanism, getting rid of the nutrition. ARFID, or avoidant-restrictive-food-intake disorder, is a type of disordered eating. It’s not thought of as an eating disorder. It’s a feeding disorder.
And it’s characterized by not getting enough nutrition for different reasons. It may be having to do with texture, it may have to do with a fear of an adverse consequence like choking or vomiting, but the key element is you’re not getting enough nutrition to grow appropriately, to maintain a healthy weight. And another key feature is it’s different than anorexia nervosa because there is no preoccupation with body weight, shape, or size. And that is very important.
However, the physiologic consequences of avoidant-restrictive-food-intake disorder can be as severe as that of someone who has anorexia nervosa. So to the person who has anorexia nervosa, the eating disorder is telling them that everything will be better if their weight is lower, if their body is smaller. And so what that looks like is someone believing that when they get to a lower weight, they will excel in their sport, in their school, as a peer, as a child, as a sister, as a brother, as a friend. And to the onlooker, it makes no logical sense. That’s because we’re talking about an eating disorder, and eating disorders are not logical. And that’s the illness.
Mary Tantillo: Beauty, success, and control get attached to body weight and shape for these patients. And it’s tragic.
Sandra Knispel: We’re going to talk a little bit later about the medical problems that go hand in hand with eating disorders. But first I want to know – I’m coming to you, Mary Tantillo, what and how prevalent are these eating disorders among teens? How common a problem is it, actually?
Mary Tantillo: It’s actually very common. If you look even cross-culturally, the prevalence rate for teens of eating disorders is somewhere around 15 percent—for girls. And about 3 percent for boys. So it’s definitely a window of time where you can begin to have an eating disorder. The most common median age range is somewhere between 14, 16, up until like 18, 22. Very common. I think it’s important to remember that in one of the studies that almost 60 percent of adolescent girls in general in studies have body dissatisfaction and/or are dieting.
And a third of boys are dieting. And a quarter of boys also have body dissatisfaction. That’s just kids. If that’s where we’re starting, it doesn’t take much for someone who is genetically vulnerable with enough environmental stress to move into an eating disorder.
Sandra Knispel: What kind of teenager then is most likely at risk for developing an eating disorder?
Mary Tantillo: Anxiety in a teen, perfectionism in a teen, and or impulsivity can be either extreme. Because one of the ways that we learn to end up self-regulating is through an eating disorder. Eating disorders are very helpful. They don’t look helpful to someone watching, but for the teen themselves, it could help you regulate very intense emotion that feels overwhelming, for example. There’s lots of transitions happening at the time of puberty, or in that time when you’re transitioning from high school to college.
Our bodies are changing. Our roles are changing. There’s a lot of emotions to go along with it. Also, we don’t have full brain development. For example, our frontal cortex, which helps us with higher level thinking, and planning, and goal setting, and thinking ahead. That’s not going to really be done until we’re like 25. So you don’t have the hardware to deal with all these transitions. And if you’re an anxious sort, perfectionist, hard on yourself, and or impulsive, then an eating disorder can start in folks who are genetically vulnerable. And with that environmental stress, turn on those genes.
Taylor Starr: So if we think of the strengths that people have who excel in athletics, some of those common traits go along with people who are predisposed to developing an eating disorder. While they can help you in many ways, they also can predispose you. Athletes in certain sports are often thought to have a higher risk of developing an eating disorder. Specifically, sports that are judged on body weight or shape.
However, I’d encourage people to think about any athlete being at risk for developing an eating disorder. There’s often mixed messages from the athletic world about how to enhance your performance. And sometimes those tendencies can then trigger an eating disorder—whether it’s an eating pattern, or an exercise pattern, and leading to disordered eating behaviors, which often trigger a full-fledged eating disorder.
Sandra Knispel: Why is it so important that these disorders are found and treated early?
Taylor Starr: When we’re talking about recovery from an eating disorder, some really important things are catching it early and treating it early and aggressively, which will help with recovery. And part of that, the first thing we talk about is restoring eating behaviors and weight. That will address the physiological consequences that have come from the malnutrition from the eating disorder. Then nourish the brain so the person can move forward and do the psychological work they need to do.
Sandra Knispel: Because if we don’t, there are hard problems, very often, that can even be fatal, because of the malnutrition, correct?
Taylor Starr: The physiological changes that happen from malnutrition from eating disorders are reversible for the most part. So it’s essential that we catch these disorders early, and we treat them aggressively. The entire body can be compromised from the malnutrition or the eating disorder behavior. So that includes cardiac abnormalities, abnormal heart rhythms that lead to death. That includes bone problems—specifically when people are underweight and then they’re more predisposed to lower bone density, which is typically not reversible. But all the other consequences, if you re-nourish the body, are reversible.
Mary Tantillo: And additionally, people don’t realize that in addition to the physiological complications, the risk of suicide is quite high with eating disorders. I think about 20 percent of deaths for folks with anorexia nervosa have to do with suicide. Then the others are the consequences of starvation, and the consequences of the other things like electrolyte imbalances or cardiac events. One person each hour, every 62 minutes, actually, is dying because of an eating disorder.
Sandra Knispel: In the US.
Mary Tantillo: Yes.
Sandra Knispel: Wow. When we think of eating disorders, we often tend to think of the white female teenager, but obviously you said earlier on it doesn’t discriminate. Male eating disorders make up about 25 to 30 percent of total cases. And I read they’re often more deadly. Why?
Taylor Starr: Often males do not come to care as early as others. And so their diagnosis is later, and therefore they will have had the eating disorder longer, and will have physiological consequences that are more severe. That also has to do with their body mass and lean muscle mass. So again, identifying the eating disorder earlier in males, and knowing that eating disorders do not discriminate and that males develop eating disorders is important, and they can, if brought to care, have fewer medical consequences. And therefore fewer deaths.
Sandra Knispel: I want to go back a little bit. When we’re talking about the kind of teenagers that are most likely, the most prevalent in developing eating disorders, how do these disorders affect the LGBTQ community?
Taylor Starr: We know people in the LGBTQ community are at higher risk generally for developing eating disorders. Not only anorexia nervosa, but bulimia nervosa and binge-eating disorder. So definitely thinking about anyone in that community, specifically transgender people are at higher risk. And when we talk about signs and symptoms, it’s important to think about the ones who are in that community, as they are also at risk. And the earlier we can identify it, the sooner we can intervene and help them with recovery.
Sandra Knispel: I read about two-thirds of people with anorexia nervosa also showed signs of anxiety disorder, and they do so often several years before the start of the eating disorder. So do you both—as practitioners—does that mean you automatically look for other disorders that need treatment when you see a teenager who is presenting with an eating disorder?
Mary Tantillo: Absolutely. Definitely you want to look for comorbid disorders, so for example, anxiety disorders, definitely. There may have been a childhood onset of obsessive compulsive disorder, or that could come along with the eating disorder later. In adolescence there can be social phobia, there can be generalized anxiety disorder. In addition to that, you can also have a substance-use disorder, you may develop personality disorder, and how that happens is the eating disorder hurts your ability to develop healthy coping interpersonal skills, to be able to be mindful.
So personality disorder could also be happening, and difficulties with mood regulation go along with that. You may also have history of trauma, and post-traumatic stress disorder, which would be important to pay attention to. And lots of different mood disorders. So depression and even bipolar illness—where there’s smoke, look for fire. It doesn’t always mean there’s going to be a comorbid illness, but it’s very common to either have one going into the eating disorder, or to develop one, because you’re worn down because of the illness, to develop something like depression, more anxiety, and maybe even substance use after you have an eating disorder.
Taylor Starr: The eating disorder on top of those comorbid preexisting other mental health diagnoses exacerbates those, and they become obvious sometimes because of the disordered eating behavior, whether it’s restriction, or binging, and/or purging, affects our brain. And so if our brain is malnourished, we’re going to be more irritable, we’re going to be more anxious, we are often maybe going to feel more depressed, or even emotionally numb.
Sandra Knispel: You said we feel more numb, possibly. But on the other hand, there’s also this kind of switched brain function, where the brain is telling you something that healthy people, we know, not to be true, creating this vicious cycle. So for a healthy person eating food calms you down, it’s—well, we call it comfort food. However, if you’ve got an eating disorder, very often eating food causes anxiety, and refusal to eat decreases anxiety. Why is that?
Mary Tantillo: One way to think about that is folks with eating disorders—and a lot of this has been done with anorexia nervosa—may be wired in a reverse way. So that when we do eat, we’re supposed to feel a sense of reward, and have kind of a dopamine hit. It may work opposite in someone with anorexia nervosa. They actually feel— they may feel better and less anxious if they’re not eating, so you can imagine what kind of challenges that creates.
And also, in terms of information processing, there has been research done again on folks with restrictive anorexia nervosa, both when they were acutely ill, and when they were also recovered, like 18 to 24 months, and found in that group that there was trouble with processing information, for example. They hooked that up to the insula. The insula is like a railway roundhouse. It takes in external sensory information like what we see, and smell, and taste, and hear, and combines that, synthesizes it with what’s going on inside, so like when you walk into a room and the lights go off, you get that umm feeling inside your belly.
It’s because the insula has helped integrate what you see happening and what’s going on inside to help you then send that message to other higher level centers in the brain to figure out, ‘Geez, do I get out of here, do I stay here?’ Folks with anorexia nervosa have difficulty taking in that information, because there may be a disconnection in the insula. So that information is not being put together, so if you look in a mirror, you may not see accurately what is in that mirror reflection.
You see yourself as larger. Or you may experience your body as larger than what it is. You may even look at your loved one’s face or therapist’s face and that might be a neutral facial expression that they have, but you’re interpreting that as angry. So it creates all kinds of challenges. It’s kind of like being in the woods. And not having an accurate compass. You think you’re going north but you’re going south. And it’s hard to believe other people when they’re telling you that. It’s kind of scary when you think about that.
Sandra Knispel: I’d assume also as a parent—you see your child getting thinner and thinner and thinner, possibly, and yet your child says, ‘I’m still fat.’ And you can’t break through with reason at that point, correct?
Mary Tantillo: No, you can’t. And also, some folks have what’s called anosognosia, which is similar to what folks with schizophrenia might have, or where you don’t even realize that you have an illness. That makes it very difficult to treat in situations like that. Very hard for family members.
Sandra Knispel: Then let’s talk about red flags. Because now we’re scaring everybody. So what should parents, teachers, coaches, really all school personnel, anybody who deals with teenagers, what should they know, what should they look for?
Taylor Starr: There are a lot of things to look for. I think a lot of what we’re talking about is eating pattern changes, which we can talk about and look for, but there are other things. So in terms of the eating pattern changes, seeing children who are avoiding eating situations with their friends, with loved ones, pulling away from different situations, anything to do with food, feeling embarrassed to eat in front of other people. The other things to look for are mood changes.
The other things to look for are isolation. So pulling away from things that people typically like. Their sport, their peers, their friends, their family. The way for the eating disorder to survive is to isolate the individual. So looking for those different patterns. If it has to do with exercise, not taking the water breaks or the breaks that the coaches are asking the athletes to take, not fueling their body before sport, changing their exercise routine, feeling compelled to do a lot of other exercise besides their typical sport, isolating in their room, isolating away from family.
Mary Tantillo: And I think with athletes, too, they’re even doing the sport in the face of fatigue, in the face of physical pain. So it’s more of a compulsive activity that you’re looking for. These kids worry—a lot of obsessive thinking. And a lot of compulsive—they’re very driven, they’re very driven. And either weight loss, or weight gain, or fluctuating between the two, you can look in someone’s backpack, and find diuretics, which are water pills, or diet pills, or any other agent.
Sadly, kids get their hands on steroids sometimes. The guys sometimes want to be lean, but they also want to bulk up and have muscles. So there’s all kinds of things and difficulties kids can get into when they’re feeling very preoccupied about their body weight and shape, and body dissatisfaction is the most robust predictor of eating disorders. So with kids, body esteem is a very big deal.
Sandra Knispel: And there are also subtle signs that parents can look for. For example, changes in the texture of skin, hair, knuckles. What should they look for?
Mary Tantillo: When someone is purging, they can develop what’s called Russell’s sign, which is callouses across their knuckles. Now remember, eating disorders are very crafty. You may not use your hand, your fingers to throw up. You may find other objects to make yourself throw up. So it doesn’t always happen. But you can look for that. Brittle hair. Brittle nails. Lanugo is fine, downy hair that can start growing on your face and in other parts of your body. It’s a way, as a mammal, to kind of keep in the heat when our temperature goes down. So those are other signs you can look for.
Sandra Knispel: Malnutrition will make you feel cold.
Mary Tantillo: Yes. Because your baseline metabolic rate is going down when you’re not feeding yourself properly and your smooth muscle can get very slowed down. Your food is not going along your GI tract in the way that it normally would. You get constipated. Your body is trying to help you, because it thinks you’re in a famine.
Sandra Knispel: And what causes the puffy cheeks, and how visible, how obvious are they? Would that be a sign that a parent would pick up on?
Taylor Starr: What that is, is a stimulation of two of the glands in the face from purging. That can take a while to develop and often is noticed, but parents don’t know why it’s happening. If people are noticing that their loves ones or students are leaving times when they’re eating quickly to go to the bathroom, that might be a sign they’re inducing purging. Or spending a long time in the bathroom or the shower might be a sign they’re purging. Eliminating certain food groups. Adolescents who want to become vegan or vegetarian when it’s not in the context of a family decision should be thought about and can be brought to the pediatrician to talk about.
Mary Tantillo: Whenever you see a kid make continual excuses for not eating with peers, that’s really unusual. Pay attention to that as well.
Sandra Knispel: If you have a daughter who has been menstruating regularly, and all of a sudden menses stop and become—she goes for months without—I guess that’s also an immediate sign, because the BMI has dropped too much, correct?
Taylor Starr: Sometimes that happens actually before the weight changes and has to do with a quick energy balance change. So sometimes that’s definitely a red flag. I’d also say if the response is, ‘Well, all the people on my team don’t have a period during season!’ I would say that is common, but not healthy or normal, and that should be brought to the doctor’s attention immediately.
Mary Tantillo: And it varies with women. Some women will lose their period early in the process of not eating. Some women can go for long periods of time and not lose their period. So you don’t want to hang your hat on that. But it is definitely important. That criteria was actually removed from the DSM-5, which is kind of like a psychiatric bible for diagnoses. It was removed because of the variability. And also men don’t have periods.
Sandra Knispel: Right [laughter]. So I’m just thinking –
Mary Tantillo: Right.
Sandra Knispel: If you have a teenage girl, and all of a sudden it stops for whatever reason, you should—
Mary Tantillo: Pay attention.
Sandra Knispel: Bring this up with your pediatrician and say
Mary Tantillo: Yes.
Sandra Knispel: Say, ‘this is weird.’ So what do you counsel parents? I’m trying to figure out. So here I am. Cards on the table. I’ve got two teenage kids right now. Would I confront my child with the evidence? Would I voice my suspicions? Would I simply—
Taylor Starr: So no one wants to talk about something that’s uncomfortable. So I would say that this needs to be talked about. I would choose a private setting. And using I statements can be very helpful. And factual statements. So instead of saying you are—we can turn around to say I, as your parent, am worried, because I see that you are no longer at the table with us at dinner, or I see that your lunch is coming home and you’re not completing it, or I see that you feel the need to exercise right after eating, and I’m worried. That can be your way to open up the communication and certainly bring that then to your pediatrician or family doctor.
Mary Tantillo: Eating disorders are very big with kids on control. So in order to have the really good conversation, you want to shift out of the control arena, into the care arena. This is why Taylor is saying to try to pair up your observations with the feelings you have towards your child. So you can begin by saying—and most parents would do this—I love you, and I’m worried, because this is what I’ve been seeing. If you can pair the feelings and concern throughout the conversation, then the eating disorder won’t start whispering into the ear of the child, and go, ‘Well, your parents just want to control you, they’re trying to take you away from me.’
Because the eating disorder wants to envelop the child and stay connected to the child, and lots of negative distorted thinking can get going when the child feels their back is up against the wall. It’s the eating disorder that’s making them think this way. So pairing emotion, and concern, and love with the observation is very important. Whether you’re a school personnel person, or whether you’re a parent or a provider.
Sandra Knispel: So now we’ve told parents what to look for. We need to tell everybody also how do we tackle this problem. There are some very distinct methods. Which ones are the most common therapies and broadly what do they entail?
Mary Tantillo: So for adolescents with eating disorders, family-based treatment is the number one go-to first. And what I mean by that is—it’s different than traditional psychiatric treatments, which lots of times talk about “problems in the family.” Family-based treatment sees parents and families as resources, our biggest resource for recovery. And so it’s in three phases—family-based treatment. It’s also called the Maudsley Approach.
In the first phase, you basically give the control to restore weight and healthy eating back to the parents, as if the adolescent was a younger child, so the parents learn how to prepare food, how to serve food, make the choices for the child. And that goes on until a child is able to demonstrate increasing ability to self-care and be able to take that control back, which is in the second phase of the treatment.
So maybe you’ve gotten rid of purging. If the child is dealing with bulimia nervosa, you’re able to restore weight. And so then you start handing back the control. Maybe they have kind of a snack at lunch. Then with less monitoring. Then you can move back into giving them even more control.
And the last phase of treatment—then you start talking about the adolescent stressors that may have helped bring on the eating disorder as a solution to those stressors: whether it was regulating emotion, feeling better in a changing body, having lost a friend and not knowing what to do. That’s the last stage.
And it’s very strengths based. It’s not problem based. And throughout the whole thing, the parents are your biggest resource. If family-based treatment might not work and in the situations where it may be less viable are with kids who have been sick for more than three years or are over the age of 19, you might go to cognitive-behavioral treatment as your go to in that situation, which is more of an individual-based treatment.
I’d definitely still keep parents very close. And always involve parents and loved ones in treatment. That we would err on the side of family based—in any way, shape, or form—because families are big resources for you. So those are the two go-tos. There are other research studies which have talked about more of an adolescent cognitive-behavioral treatment. There are some modifications made for adolescents because of their developmental stage. But those are the three go-tos that I would start with. And of course some kids need medication.
Sandra Knispel: Then there’s also obviously, Taylor, if you see somebody who is so emaciated and who has got tachycardia that there is a real risk of death fairly soon. At that point, would you even send that kid home with a family, or would they immediately go to an inpatient program?
Taylor Starr: No. So when we’re talking about the medical evaluation, if someone is showing signs of physiologic or medical instability, or despite support from family has acute food refusal, then all bets are off. We really need to medically intervene and often hospitalize adolescents. And here at Golisano Children’s Hospital, we have a program for that. And that is to help start to refeed the person’s brain and body so that they can then move forward with the family-based treatment. But family-based treatment, what Mary’s talking about, is in the context of someone who is physiologically stable.
We always put safety first. We don’t want someone out of the hospital if their body is going to be unsafe. If someone is very underweight, the process of actually refeeding that the family is trying to do sometimes needs to be done in the hospital for it to be done safely.
Sandra Knispel: Can one ever really be cured of an eating disorder, or is that like alcoholism, something that stays with you, you will always be a recovered alcoholic all your life? How does that work with eating disorders?
Mary Tantillo: Yes, absolutely, people can recover fully from an eating disorder. The research would say at least 50 percent of people can fully recover and I think with kids if you get it earlier it’s more like 70 or 80 percent. Like with other illnesses with a continuum of severity of illness, like diabetes, you can sometimes control it just by exercising and eating healthily, but then some people go on to having to take medication for diabetes, or insulin.
With eating disorders, there’s a continuum of illness, and some people sadly are going to have a chronic illness. Hopefully not as many if we get to it more quickly and intervene quickly.
Sandra Knispel: What are strategies that maybe every parent should know about what to do, or what not to do—to make sure your teenager doesn’t develop an eating disorder?
Mary Tantillo: Body esteem would be the first one I’d go to, and self-esteem, because body dissatisfaction is the most robust predictor of eating disorders. So helping kids not be obsessed with dieting, and changing the way they are, helping them understand that we’re made with diverse size and shapes for a reason. That’s normal. Family meals are very protective, at least five family meals per week. Because it helps us to know our kids are being nourished, but also promotes communication and connection in our families.
Taylor Starr: So going along with that, modeling healthy eating behaviors. Not self-deprecating ourselves around our body weight, shape, or size. Not connecting how one looks to success.
Sandra Knispel: Can you both give me one myth that you know is widely held about eating disorders? What truth do you wish everybody knew about these conditions?
Mary Tantillo: The truth is that families do not cause eating disorders. They are our biggest ally for resource and treatment and we should always remember that. Regardless of whether you are an adolescent or adult, we need to pull in family. Not only family of origin, but remember with adults also family of choice, friends, partners, sponsors. That would be my big one.
Taylor Starr: People do not choose to have eating disorders. They are illnesses that develop. And we must separate the illness from the person.
Mary Tantillo: And also you can have an eating disorder and look “healthy” but you could be very sick. You can’t just look at a person and know whether they have an eating disorder or not. And they can happen across ethnicities, genders, sexual orientations, races, ages—they’re not discriminating.
Sandra Knispel: Thank you so much to both of you for coming in and talking to us.
Mary Tantillo: Thank you for having us.
Taylor Starr: Thank you for having us.
Sandra Knispel: Our guests today were Dr. Taylor Starr, a specialist in adolescent medicine and eating disorders, and Mary Tantillo, professor of nursing, who is a fellow of the Academy of Eating Disorders, and the author of the new book, Understanding Eating Disorders. I’m your host, Sandra Knispel. As always, thank you for listening to the University of Rochester’s Quadcast.