The Last to Know
A call from the school psychologist finally revealed the problem that was too close for this Marin mom to see. Many other families are facing similar struggles with dangerous eating disorders.
I WISH I COULD start this story in a way that would make me look good — the watchful mother, aware and attuned to the fact that her daughter was in danger. I wish I could describe a wake-up moment — at the beach, or in a department store dressing room — when I suddenly noticed my daughter’s stick-thin arms, her shoulder blades jutting out unnaturally beneath the straps of her tank top. I wish I could say that it was I who made that call to the doctor or therapist, asking for help the minute things began to go wrong.
But that’s not how it happened. Instead, the phone call came from the school psychologist, reading from an email Serena had written to a friend. In it, Serena described in stark terms her deep despair over a battle with anorexia that had been going on for more than a year, since well before the start of high school.
How could this be true, and how had I not noticed? I asked myself, slumped on the stool in my daughter’s bedroom, where I’d instinctively gone the minute I heard the counselor say her name over the phone. Around me I saw a typical 15-year-old’s room, festooned with colorful posters, a rainbow bead curtain, light-up butterflies dangling over the bed. Serena had seemed fine that morning, heading off to school with her usual goofy cheer, reminding me about a drama rehearsal after school. Yet when the counselor finally put her on the phone, she was choked by sobs. Yes, it was true. She couldn’t let herself eat. And she couldn’t control it. How could this be my girl talking?
There were answers, of course, answers that made sense later, when I learned more about how eating disorders work, and how they thrive in secrecy. Serena ate fine in front of me — she powered through pizza and chicken burritos just as she always had, laughing on the couch with us over a favorite episode of Veronica Mars or Gilmore Girls.
Her weight hadn’t offered a clue, either, or at least not an obvious one. Always a string bean, under the 20th percentile for weight and above the 90th percentile for height her entire childhood, she hadn’t lost weight, she’d just failed to fill out as she hit adolescence.
But she’d been skipping lunch, ducking into the bathroom while her friends ate, or arriving as they put their bags away to say she’d eaten during break. Those peanut butter sandwiches I’d watched her make, the bagels with cream cheese, the apples, the mini boxes of raisins — all in the trash, day after day.
And she’d been lying — lying about the meals and snacks she said she’d eaten at friends’ houses, lying about the club meetings she said she’d been attending at lunchtime, even lying about foods she’d recently announced she didn’t like, such as pasta.
But what about breakfast, which typically in our harried household consisted of something slapped together and eaten on the way out the door — she never skipped that, right? Suddenly I remembered the pink frosted Pop-Tart I’d pulled out of the bushes in the front yard a few months back when I was gardening. And it was as if someone had flipped the lens of a camera upside down. Suddenly we were in a new world, one where nothing looked the same.
It happened fast, after that. A call to her pediatrician at Kaiser led to a multifaceted program that included weekly weighings, consultations with a nutritionist, individual and family therapy, and support groups, both for her and for us.
Her story, once we began sharing it, turned out not to be unusual. Parents, I discovered, are often the last to know. There’s a good reason for this, of course: our kids know that if we understood what they were doing, we’d insist that they eat. So they learn to lie — that’s part of the disease. And over time they learn to lie very well.
One Family Among Many
What else have I learned? That eating disorders are much more common than most of us realize. Nationally, 20 million women and 10 million men suffer from an eating disorder, according to the National Eating Disorders Association, but only one in 10 gets diagnosed. Rates are much higher among adolescents; a recent survey found that these disorders affect 5 million teens ages 13 to 18.
It’s not easy to cite local numbers, as they aren’t tracked in county and state health surveys. But in 2000, when researchers from the National Eating Disorders Screening Project surveyed ninth graders at a Marin high school, they found that Marin’s rate of eating disorders was twice the national average.
And by all reports, the numbers have continued to rise since then. “I’ve seen a significant increase in cases over the past few years, and this fall I’ve received more referrals than I’ve had at any other time in the past,” says Haleh Kashani, a therapist in private practice in Corte Madera who is also program director of an outpatient HMO eating disorders program for adults and adolescents in Marin County. In fact, of the five therapists I spoke with for this story, all say they are seeing more eating disorder cases than ever before.
Binge eating, too, is spiking, particularly among adults. Characterized by eating a large quantity of food in a short amount of time, binge eating can be differentiated from overeating by the obsessiveness, loss of control and extreme shame and self-hatred associated with it, says Kim Leicester, a therapist in private practice in Corte Madera. “Like other eating disorders, it’s done in secret, you can’t help yourself, and you become obsessed to the point that it interferes with other aspects of your life.”
And many kids are now having problems as early as elementary school, experts say. “I’m seeing body image and eating issues among younger and younger kids. I’ve seen 7- and 8-year-olds pinching their bellies and saying ‘I’m so fat’ and talking about dieting,” Kentfield therapist Lauren Isaacson says.
The intense pressure to be successful that Marin kids — and adults — feel may be an underlying contributor to the problem, experts say. “We know that being high-achieving and perfectionistic are characteristics that many with eating disorders have,” Leicester says. “There’s an image consciousness here; kids feel pressure to be cool, to look good, to fit in.” Bulimia in particular can be contagious, she says. “We hear people minimize it; they say, ‘Everybody does it, it’s not that big a deal.’ ”
But eating disorders are a big deal — in fact, they can be deadly. “Anorexia has the highest mortality of any psychiatric condition, including depression,” Kashani notes. The mortality rate associated with anorexia nervosa is 12 times higher than the death rate of all causes of death for young women 15 to 24 years old. Without treatment, up to 20 percent of people with serious eating disorders die.
Yet sadly, only a third of those with anorexia receive treatment. And anorexia can be very difficult to cure once it becomes entrenched; in one study, two-thirds of people diagnosed with anorexia never fully recovered.
Bulimia carries a death rate nearly as high, including an elevated risk of suicide. Shockingly, only 6 percent of those with bulimia receive treatment, and relapse rates are estimated at between 30 and 50 percent.
A Life in the Shadows
The price of not receiving treatment has been high for Sylvia Keats (not her real name) of Petaluma, who recently entered treatment at age 45 after a lifetime of being sidelined by severe anorexia and resulting health problems.
Sylvia, too, became anorexic during middle school, but back then the problem was little known and even less well understood. “I lost a lot of weight and got really sick, but no one talked about it,” she says. “In college and afterwards, my friends would sometimes notice that my clothes were falling off me and tell me they were worried, but I’d just try to deal with it on my own. I would gain just enough weight so people would stop mentioning it.”
Serious health problems finally forced her to look for help, and she recently entered intensive outpatient treatment at Full Heart Treatment Center in Santa Rosa. And for perhaps the first time, she’s looking at the significant toll anorexia has taken on her life.
“It’s very isolating — I’ve never gone out to eat with friends, because I don’t want people to tell me to eat,” Keats says. She feels worst, she says, about the negative effects her anorexia has had on her children, now 27 and 17.
“All the years my kids were growing up, I knew eating together as a family was important, but we never sat down together because eating is so hard for me,” she says. “I don’t know how many times my daughter has broken down in tears begging me to get some kind of help.”
But even those experiences weren’t enough to overcome anorexia’s grip, she says, until her weight dropped so precipitously she began having kidney, vision and other serious health problems. “It [had] worried me, but not enough to stop me from doing what I was doing — the anorexia overrode everything else.”
Living in a Backwards World
There were many years when I feared recovery would never come for Serena, either. It wasn’t for lack of quality treatment; within days of that first phone call, we were plunged into a comprehensive program of familybased treatment (FBT), known to have the highest success rate of any method.
Also known as the Maudsley method, after the hospital in London where it was developed, FBT is an intensive yearlong program that actively involves parents in all aspects of treatment, including closely supervising meals to ensure the child regains weight. “Refeeding is critical,” says Isaacson. “You can’t get at the underlying issues with a starving brain.”
Meanwhile, individual and family therapy sessions focus on treating the anxiety, low self-esteem or past trauma that usually underlie the eating disorder. “Restricting food intake, bingeing and purging are coping mechanisms to numb feelings,” Kashani says.
“It may sound strange, but denying yourself food, bingeing and vomiting can provide a feeling of release, even elation,” Isaacson adds. “It’s a short-term solution with negative consequences in the long run, but it’s a very powerful response in the moment.”
In fact, eating disorders develop in similar ways as alcoholism and addiction, says Isaacson, a former case manager for Marin Services for Women, an outpatient and residential program for alcoholism. “It’s the same dance, different shoes.”
An important part of treatment, then, is learning new and healthier coping strategies. One of the most effective approaches is dialectical behavior therapy (DBT), which combines cognitive behavior therapy with mindfulness-based practices. Developed by therapist Marcia Linehan, DBT provides a “toolkit” for learning how to manage emotions, deal with stress more effectively, and better handle the ups and downs of interpersonal relationships, says Nancie Jordan, a therapist at the DBT Center of Marin. “It’s learning how to help yourself be more balanced in life.”
In addition, many people benefit from a referral to a psychiatrist for medication to treat anxiety, depression, bipolar disorder or trauma. “If there is some kind of co-occurring disorder, we definitely want to treat that because if we don’t it can lead to more relapse,” Leicester says.
“The eating disorder mindset is like an upside-down world,” Kashani confirms. “It brainwashes you into thinking being hungry is good, eating is bad — the very things that support your health get turned upside down. And when you try to get rid of it, it fights back.”
It was certainly a fight for my girl. By the time she was 23, Serena had spent many months in intensive outpatient and inpatient programs, including a stay at Herrick Hospital in Berkeley that forced her to take a year off from college. That program proved a turning point, in part because she was so dismayed at falling behind her friends.
Another turning point came the following year when a psychiatrist suggested she try a medication used in addiction treatment for its capacity to reduce cravings and urges.
But what really worked? Persistence, determination and even anger. “I finally got so fed up — I realized I didn’t want to be that girl anymore, the one with the problems,” Serena says. “I wanted to get my life back.”
When I ask Serena, now 25, what she remembers about those years, she looks sad. “I hardly have any clear memories of high school,” she says. Outings with friends, school dances, holidays and family vacations, all are hidden behind the haze the eating disorder cast over her mind. “Someone else will say, ‘Remember when we all went to such-and-such? And I don’t — it’s like I wasn’t really there.’ ”
The Darker Side of Yourself
Parker Hanley of Tiburon describes her experience of anorexia and bulimia in eerily similar terms. “Having an eating disorder felt like having a friend that’s always there for you.”
It was in fifth grade, when she was being teased by another girl, that Parker first discovered she could make herself throw up — and feel better. “It was something I knew how to do when I was upset or felt bad. I wanted to have something I could be in charge of that none of them could do.”
By eighth grade, Parker’s bulimia was bad enough that two friends became concerned and told school psychologist David Kover at Del Mar Middle School, who called her mother, Whitney. “To this day I’m so grateful to those two boys who were brave enough to come forward,” Whitney says. “They saved Parker’s life.”
When Parker entered treatment at Center for Discovery, a residential inpatient program in Danville, Whitney decided to be completely open about the family’s situation, and she sent an email to the entire school community thanking the boys and explaining what had happened.
Whitney also shared the fact that she herself had been anorexic for several years in college, and welcomed other parents to talk with her about the issue. “I got several calls from other parents who were concerned they were seeing signs, and I still get calls to this day,” she says.
Enforcing treatment can run against every parental instinct. Whitney can still picture how her daughter would beg her not to leave after every weekly visit. “Even though she wanted to get better, she would be gripping my arm and crying and saying, ‘Why are you leaving me here? You must not love me.’ I would cry in my car every time as I drove away.”
Parker, too remembers the misery. “It was horrible, and almost the whole time I was there I kept saying I didn’t need to be there. But now, looking back on it I know that I needed it and it really helped me. But it took me a long while to see that.”
Today a junior at Marin Academy, Parker has been healthy for several years, but still works to overcome the occasional negative thought. “The times I feel it most are when for some reason I think my friends don’t like me, or I don’t get invited to something. Sometimes then I have a thought like, ‘I’ll show them’ — it’s just there.”
Whitney, too, remains vigilant. “I still worry every day,” she says. “But it helps that I coach her lacrosse team, so I see her out there every day kicking butt on the field. It helps to know she’s healthy.”
The Dark Side of the Obesity Epidemic
Parker Hanley’s experience is more common than not, says Laurelee Roark, co-founder with Carol Normandi of Beyond Hunger, until recently Marin’s primary eating disorders awareness and outreach program. “All over this country, the number one reason for kids to be bullied is weight. It typically starts between fifth and seventh grade and kids carry the damage into their teens and 20s.”
The internet and social media, with their seductive images of thinness and opportunities for cyberbullying, have only deepened the problem. “We’re a fat-phobic society that equates skinniness with beauty, yet we have a huge obesity problem, so obviously what we’ve been trying to do all these years isn’t working,” Roark says.
The national conversation about childhood obesity may indeed be having negative consequences in leading kids to develop eating disorders, says Tracey Hessel, lead pediatrician at Marin Community Clinics. “We’re seeing a new phenomenon of kids who were overweight deciding to diet and the next thing you know they’ve gone [too much that] way.”
Parents and schools would do well to be very careful about how they talk to kids about health and fitness, experts say. “We need to better about not weighing kids in public and not talking about BMI,” Leicester says. “Instead, we should be teaching kids size acceptance, and talking in terms of health at every size.”
“We’re talking about kids who are at an extremely vulnerable age, they’re very aware of their bodies, and they’re just developing their sense of themselves. And when you talk about weight, what they hear is you aren’t OK the way you are, you need to fix it,” says Kashani. “And then you get that perfectionistic child, and they’re going to take it too far and end up developing an eating disorder. I hear it all the time.”
Looking for Help
Shockingly, in wealthy and mental health–conscious Marin County, resources for eating disorder treatment are dwindling. Beyond Hunger, which for 25 years provided support groups and outreach programs in Marin schools and communities, ceased its programming in September, though its founders continue to offer individual therapy.
Both of the county’s inpatient treatment programs, New Dawn and Vista, closed within the past two years. That leaves Marin families to look to San Francisco and the East Bay for intensive outpatient and inpatient programs, like UCSF’s Eating Disorders Clinic and Center for Discovery — and fight to get them covered by insurance.
The lack of services is particularly acute for those on Medicaid, says Hessel. It’s not that Medicaid doesn’t cover therapy, she says; it’s that few services accept the government insurance. “When we get a child with an eating disorder, we really have to look hard to find treatment that’s covered.”
That said, Marin is rich in psychotherapy resources, including family-based treatment and teen and adult support and DBT groups, in addition to individual therapy. Kaiser Permanente’s behavioral health department offers individual and family therapy, support groups for both patients and families, and intensive outpatient programs (IOPs) for those who need it, although families have to go out of county to access those programs as well.
The more resources the better, because timing is crucial to the success of eating disorder treatment. “We know that if people with eating disorders are treated during the first six months to a year of onset, there’s a very good chance of full recovery, and it goes down from there,” says Leicester. “So I would tell parents and friends, if you notice something off, listen to yourself and don’t wait too long.”
Jordan agrees: “As complicated as this issue is, we’ve made a lot of progress and there is effective treatment for this. People do recover and reclaim their lives.”
The Next Chapter
“I wish I could tell all the young people out there, as soon as you start thinking you’re having an unhealthy relationship with food or your body, get help, because trying to do it when you’re older and all these behaviors and thought patterns are ingrained is a much different journey,” Sylvia says.
“In my support group there are a number of high school students. And I’m not downplaying what’s happening for them, because it’s horrific. But sometimes I can’t help but look at them and think, if I could have gotten help when I was their age, what would my life be like now? Things might have been so different.”
Today in our family, we don’t talk about Serena’s eating disorder that much, though I still feel a nagging anxiety if too much time goes by between phone calls. And I don’t know if I’ll ever stop covertly glancing at her during meals to make sure she’s eating, or feeling a knot in my stomach if the bathroom door is closed too long.
But every three months I get a text announcing that she’s passed a new milestone since she last purged more than two years ago. And in her wallet she carries a gold coin her therapist gave her to commemorate her first six months bulimia-free.
The inscription on that coin: “On this day my new life began.”
THE SECRET CODE OF EATING DISORDERS
Eating disorders are insidious, and only a subset of patients become underweight enough for others to notice. Other signs to watch for:
• Skipping meals regularly
• Frequent excuses for not eating, such as “I ate at a friend’s”
• Picking at food or secretly throwing it away
• Avoiding certain food groups, such as carbs
• Going to the bathroom after a meal
• Taking a shower after a meal
• Obsession over weight or body size
• Using veganism, gluten sensitivity, and other dietary restrictions to avoid eating
• Eating unusually large quantities of food seemingly without control
• Hiding or hoarding food
• Black-and-white thinking about food
• Rigid exercise regimen, talking about need to “burn off” calories
EATING DISORDER RESOURCES
CENTER FOR DISCOVERY
UCSF/BENIOFF CHILDREN’S HOSPITAL
EATING DISORDERS PROGRAM
KAISER PERMANENTE BEHAVIORAL HEALTH
DBT CENTER OF MARIN
COMMUNITY INSTITUTE FOR PSYCHOTHERAPY