“That’s the whole stigma-of-eating-disorders thing. The more you keep the secret the more you keep the stigma attached to it.”

In the spring of 2005, writer Harriet Brown’s then 14-year-old daughter, nicknamed “Kitty,” became anorexic. It marked the beginning of a horrific year for Brown and her family, in which they battled what she calls “the demon” that took over her child’s mind and body, threatening to starve the girl to death.

The experience was not only heart-wrenching and exhausting, but mind-boggling, too, as so much of the information Brown was handed about anorexia, as well as the standard medical approaches to it, just didn’t make sense to her. To her mind, her family didn’t mirror the typical dysfunctions that many in the field insist “cause” eating disorders. And the idea of sending her daughter away to a special program where she’d bunk with a bunch of other girls hell-bent on starving themselves–and where anorectics often learn additional self-destructive tricks from one another–was simply out of the question.

Brown became determined to do her own research. She learned about Maudsley Family Based Therapy, initiated in England in the mid-1980s, which involves re-feeding at home, and intimate family involvement–an approach that flies in the face of conventional treatment, which has always held fast to the belief that parents and siblings can only hurt, not help. And she came across studies strongly suggesting that eating disorders are not borne of emotional and social factors alone; rather, they’re also rooted in neurobiology and genetics.

That heralded a different kind beginning for Brown, in which she became something of a firebrand, questioning many of the established notions and assumptions about eating disorders–first in an article for The New York Times Magazine, then on her blog, and finally in a new memoir inspired by the Times magazine article, Brave Girl Eating, coming out on August 24. The book is equal parts memoir and journalistic exposé, bound seamlessly together with Brown’s poetic prose.

Brown chatted with me by phone, from her office at Syracuse University, where she teaches journalism.

Did your daughter, Kitty, know you were writing this book?
She didn’t know at first, when she was very sick. Later, she gave me her blessing, although kind of reluctantly, to The New York Times Magazine article, and then the book.

Are you ever concerned about having exposed her in this way? Not long ago I ghostwrote a memoir in which the author reveals that one of her sons had anorexia. People were so angry that my client revealed this, even though the kid gave his blessing. They said, “He’s fourteen years old! How can he make that decision for himself at this age? Now it will always be known.”
And so the fuck what?! That’s the whole stigma-of-eating-disorders thing. The more you keep the secret the more you keep the stigma attached to it.

In the book you talk about how if you have diabetes, you aren’t judged for it, but when it’s an eating disorder, which now appears to have biological, genetic roots, you’re horribly stigmatized. And you don’t judge your daughter. You’re very compassionate toward her. You blame “the demon” and the part of her that you call “Not-Kitty,” but you don’t blame Kitty herself. Do you ever worry that some day Kitty will turn around and say to you, “How could you have done that to me?”
Yes, I do. Actually, I’m assuming that will happen at some point. There will be a time when she’s really angry about it. I’m hoping we will get through that. There was a moment about a year-and-a-half ago when she was sliding into a relapse, and the words she used were, “I’m relapsing because of this book you’re writing.” And I said to her, “If this book is going to be an impediment to our relationship, I’ll just drop it.” And then she said, “No, I don’t want you to do that, it’ll make you upset.” And I said, “No, I don’t want to lose my relationship with you over this.” We talked about it a lot for many months. She kind of grudgingly gave her blessing and said, “No, you can do it, even though I’m upset about it.” Lately she says she thinks it can do a lot of good. But she is also a very private person.

Did you change your daughters’ names?
Yes, and they don’t share my last name. I also changed a few physical descriptors in the book. I mean, anyone who knows me will know it’s them, but it’s not as if you can google Kitty Brown, and find her.

You write a lot about food and weight–on your blog, in the science pages of The New York Times and elsewhere–often presenting information that challenges what everyone assumes. Was this an area of interest for you before Kitty got sick, or something you always wanted to pursue?
It’s definitely been a huge theme in my life and something I’ve always been interested in. It took me a long time to sort out my own issues with food. I went to see a therapist when I was 35 about food stuff, not because I had an eating disorder, but because I had a lot of anxiety and baggage around food. It was Kitty’s illness that radicalized me in a lot of ways, around eating disorders, and sensitized me to the kind of interchanges we have all the time about appearance and body image and food. So in a way, her illness was a catalyst for me.

One of the notions you try to dispel is that dysfunction in the family–around many things, including food–necessarily causes eating disorders. I struggled with an eating disorder in my teens and early twenties, and I come from a family where there is a lot of dysfunction around food, so that always made sense to me. But in the book, you talk a lot about the biology that seems to be behind it, and that just blew my mind. Do you think it could be a combination of factors?
What we know now is that there is a very strong biological and genetic component that makes some people more predisposed toward it. We know that because we can look in the brain through functional MRI scans, we can see what parts of the brain light up when we’re thinking and talking about certain things, and we can measure hormones. They haven’t identified a specific gene, but they’ve identified a chromosome where they think that stuff lives. I think where nurture comes in is to trigger this stuff.

How prevalent are eating disorders these days?
Well, you just told me you had an eating disorder. A photographer was just in here from a local paper who said she had anorexia when she was younger. I feel like everyone I talk to says either they had an eating disorder, or their sister or their best friend did. Yet, the statistics, at the very most generous estimates, say only two percent of the population has anorexia. I’m kind of baffled by that. It seems to me there’s some underreporting. My daughter was never diagnosed with anorexia by her psychiatrist. She called it Eating Disorder Not Otherwise Specified, or EDNOS, although my daughter met all the criteria.

There seems to be a pretty broad spectrum people can fall into.
I think a lot of people fall in to a trap of “disordered eating.” They keep track of everything they eat, or they keep a very strict exercise regimen, where they feel they have to sort of “purge” off extra food. It’s pretty widespread, but you wouldn’t say they have diagnosable eating disorders.

Our culture is just really dysfunctional around food. I grew up in a Jewish family that was obsessed with food and weight. Anytime people see each other, the first thing they say is, “Oh, you look great–you lost some weight.” With a daughter with anorexia, I had to train and retrain them.

I grew up with a compulsive over-eater who was always alternatively starving and dropping a lot of weight. And then that person would also criticize my body, and tell me I was getting fat, and if you look back at pictures–no, I wasn’t. I can’t imagine that didn’t affect me. But you’re saying I must have also had the genetic, biological predisposition?
What happened there in your family didn’t cause you to have an eating disorder. Do things like that affect you? Sure, families affect each other. But I don’t think it can make you have an eating disorder. Actually, I’m pretty sure. Otherwise I would have had an eating disorder from the time I was five. And I don’t think I ever did, even though I had a lot of confusing feelings about food. If you don’t have the genetics for this stuff then you stand a better chance.

Some of the assumptions about eating disorders always made sense to me. I didn’t like that I was developing, physically. I feel like I was trying to arrest that. And I felt like I had control issues with my parents. All the “classic” stuff.
People in the field look at eating disorders as multi-factorial. It’s like cancer–you can’t point to one thing and say that causes it. But you can be sure that biology is in the mix. The best estimate we have is 80 percent. What does that mean? Are 80 percent of cases biological? I don’t’ know what that means.

Where it becomes important, though, is we have abysmal treatment and recovery rates, and many ineffective treatments. We may never be able to answer the question of what causes an eating disorder or what caused this eating disorder, but I think we can do much better in terms of helping people recover from them. Clearly what we’re doing now doesn’t work all that well.

What are some of the factors in making someone genetically predisposed?
There is a big correlation between eating disorders and anxiety disorders. If you look back into your family, you will probably be able to see that there are also anxiety issues. There is also a big correlation between OCD and eating disorders.

There’s also some evidence to suggest that some OCD begins with strep throat. There’s a lot of new information about PANDAS–Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococci. The scientific community hasn’t entirely pooh-poohed it, which makes me think there’s something to it. Your screwed-up family dynamics don’t cause an eating disorder. They can trigger it, and they can make it harder for you, creating a culture where it’s hard to recover.

You say it’s also passed genetically. Did other people in your family have eating disorders?
My mother’s sister was bulimic for like fifty years. I never put that word on it. I knew it from the time I was five or six. After every meal, it was like, oh, there goes Selma, into the bathroom, running the water. We knew what she was doing.

You also challenge the notion of anorexia being a disease limited to upper middle-class girls. You say that’s not true–that anorexia doesn’t discriminate.
Every expert I’ve spoken to says you find it across the board. I suspect that it is diagnosed more in richer families and treated more.

On your blog, you are also challenging a lot of accepted notions about the so-called childhood obesity epidemic, which you say is over-blown.
Becoming sensitized and radicalized and delving into the science of metabolism and eating disorders because of my daughter’s illness led me to reading a lot and researching about the other end of the spectrum. I thought of myself as a fat kid. But when I look back at pictures, I wasn’t fat at all–I was perfectly normal. I know a lot about the stigma that can come from being called fat. I just think our whole culture is like, drunk. They’ve all drunk the Kool-Aid on “Thin Is Always Better.” Someone like the first lady, who definitely has good intentions, and loves children, seems to have drunk the Kool-Aid.

There’s a lot of moralizing around weight and food. People get to feel very good about themselves because they skipped snack today, and here you are telling them, maybe they’re not so good. And maybe restricting themselves—and their kids—like that is actually bad. And they don’t want to hear it.
Why is it a moral issue? I think of all [because of] this moral value around being “heart healthy.” But when it comes right down to it, it’s just about your plumbing. Either your plumbing is clogged and it needs some Drain-O, or it’s not.

I’ve lost friends over this whole eating thing. With one in particular, we stopped being friends because we couldn’t talk about this stuff. She didn’t want to know more about it. She just wanted to have her prejudices and opinions and not have to learn anything else.

In the epilogue you mention Kitty’s relapse. There’s not this big happy ending where she’s perfectly recovered. But you remain determined to continue with the Maudsley Family Based Therapy, and also seem somewhat optimistic.
One of the myths I want to dispel is that it has to be true that anorexia never goes away. I believe some people can recover from this and walk away and not be consumed on any level by it. My deepest wish is that Kitty can recover and walk away from this. On the other hand, we all have our demons that we carry around.

And finally, Harriet Brown, what’s your Six-Word Memoir?
I write so I’m not alone.

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Tags: anorexia, Brave Girl Eating, Harriet Brown