Brave Girl Eating_A Family's Struggle with Anorexia

chapter seven

In Which We Take On the Insurance Company, and Lose

It wasn’t simply that I chose not to eat; I was forbidden to. Even thinking about forbidden foods brought punishment. How dare you, this voice inside me would say. You greedy pig.
—ANONYMOUS ANOREXIA SUFFERER, quoted in an online “thinspiration” video
Every family deals with anorexia in its own way, just as each family deals with—well—everything in its own way. One of the long-standing arguments for the screwed-up-psychodynamics theory is that by the time families get to treatment with an anorexic teen, they tend to look rather similar: resistant child, angry/worried/overwrought parents. Lots of tension, especially around meals. Lots of frustration expressed on all sides, especially around meals and eating. Lots of criticism, also related to food and eating.
But this homogeneity is superficial. There’s no better way to see what a family’s really made of than to go through the process of refeeding. Anorexia and its horrors can highlight every little crack in the mirror of a family’s self-image; it can also take a hammer and smash the whole thing to bits.
In their 1994 book Helping Families Cope with Mental Illness, psychiatrist Harriet P. Lefley and professor of social work Mona Wasow write:
Families [struggling with mental illness]…must deal with disrupted household routines; time investments in negotiating the mental health, housing, social security, and sometimes the criminal justice systems; impaired relations with an unsympathetic outside world; financial burdens; psychological and career impact on other household members, and difficulties in finding alternatives to hospitalization…. Families must learn to cope both with the patient’s behavior and with their own reactions; to balance the patient’s needs against those of other family members; to perceive when expectations are too high and too low; and to know how and when to set limits. They must deal with unwarranted guilt feelings, learn to handle their anger, tolerate the suffering of people they love.*
I cringe at the label mental illness. Yet there’s truth here. Janet Treasure, a psychiatrist at the Maudsley Hospital in London who specializes in treating eating disorders, says that caring for a child with anorexia is just as stressful as caring for a child with schizophrenia or other serious psychiatric disorders.
I believe it. Taking care of Kitty has been the hardest thing our family has ever gone through. Harder than both girls’ colicky infancies. Harder than my bout with postpartum depression after Emma was born. Harder than surviving the ups and downs of the freelance world, or the week Emma spent in the hospital with Kawasaki disease.
It’s harder because the range of emotions is so much greater, and because the literal exigencies of this process are so complex. There’s the denial at the start, followed by dawning comprehension, shock, and horror. There’s shame and self-blame, guilt and doubt. There’s anger and frustration. And then there’s the sheer exhaustion, physical and emotional, of battling a force you can’t physically touch and don’t understand.
I know families who put a child into residential care because they need a break, and I don’t think badly of them for it. “For a year and a half, anorexia consumed our whole family,” one mother tells me. “We had a bit of breathing room when she was away. Time to think.” I can’t imagine sending Kitty away and being able to relax. But I also can’t imagine dealing with the demon every day for a year and a half.
And then again, the fallout isn’t entirely negative. There’s a growing movement toward involving families more in the mental health treatment for their children, whether they’re dealing with bipolar disorder, eating disorders, depression, or autism. The days of experts “fixing” a child—or attempting to “fix” the child—are over. This isn’t to say that families should go it alone without professional help. But part of the pleasure as well as the burden of being a parent is engaging with your kids, no matter what’s going on with them. Caring for Kitty now—despite the demon—feels more satisfying than watching her starve and not being able to do anything about it.
The events of the last few months have taught me a lot about our family’s strengths and weaknesses. On the plus side, we’ve practiced attachment parenting from the start, and both Kitty and Emma seem to trust us. In times of trouble, they tend to turn toward the family rather than away. We know them, and each other, pretty well. We’re a communicative family, and I think we do OK at expressing feelings and listening to one another. That was one of Hilde Bruch’s critiques of “anorexigenic” families, families that produce (in her view) children who must resort to anorexia in order to express themselves. Bruch believed that families like ours shut down their children’s true feelings and engender a kind of intimacy based on falseness and superficiality.
I’m ready to take the blame for anything I’ve done that might remotely have harmed either of my daughters. But on this point, I think Bruch was wrong. Both Kitty and Emma have been enthusiastically telling us how they feel and what they think from the time they learned to talk. For the most part, we’ve been listening. Not perfectly or all the time, but consistently and enough. More than many parents.
I sound defensive, I know. Like so many of my generation, I grew up in a household where children were supposed to be seen and not heard. My parents brushed off my feelings, telling me that if I just stopped thinking, everything would be all right. Maybe they didn’t know what else to do; maybe that’s what their parents had said to them. But I grew up determined to listen to my children, even if I didn’t want to hear what they said.
Another of our family strengths is the fact that Jamie and I have very different temperaments. I’m quick—sometimes too quick—to take action and rush to conclusions; he’s a think-about-it-from-all-angles kind of guy. I’m loquacious; he’s more reserved. I like to—need to—talk things through, while he’s more private. He processes situations slowly; I tend to leap first, ask questions later. I’m empathetic, sometimes overly so, while he maintains more of an emotional distance. At times these differences have proved problematic for us as a couple. But they’ve made us more resilient and resourceful parents.
For instance, when we started this process of refeeding Kitty—only seven weeks ago?—I researched anorexia, came up with the plan to do family-based treatment, got things rolling. Jamie was slower to come to terms with what was happening. He got frustrated and angry more often than I did. “Why can’t she just eat?” he would ask me in the privacy of our room. “I just can’t understand this disease.” I didn’t understand it either, but I didn’t need to. I was focused on the next step, and the next. What did we have to do today? Tomorrow?
Now, however, we’ve switched roles. I’m the one who often loses patience first, who paces or frets when the demon emerges. I’m restless, always in motion; I clean and tidy obsessively and still have too much anxious energy at the end of the day. Jamie can sit with Kitty indefinitely as she weeps or rages. He’s the calm and steady presence these days. On one of Kitty’s bad nights not long ago, Jamie took her upstairs while I stood in the middle of the kitchen, overcome. I picked up a dirty plate, to load it into the dishwasher, and instead hurled it at the floor, where it smashed in a satisfying spray. It was so satisfying, in fact, that I broke three more. The only thing that stopped me was remembering that Kitty needs big plates. She’d freak out if I served her food on small plates, because it would look like she was eating so much more.
Jamie would never have broken plates on the kitchen floor.
On the other hand, he’s less assertive about what and how much Kitty eats. He’s hesitant to push for more and often holds back instead of actually dishing out the food and requiring her to eat. The concept of counting calories in either direction is strange to him; that and his natural reticence make him hesitant to plunge in.
If Kitty gets well, all the struggles and suffering will have had a purpose, and the hardest thing we’ve ever done will also become the most important and most satisfying thing. And if Kitty doesn’t get well?
I can’t, I really can’t imagine that.


One morning in early October, when I collect the mail, I see an envelope from Kitty’s school. I open it absently, thinking it’s a progress report. Instead, Kitty’s school picture stares up at me, taken the day she registered for school, nearly two months ago. It’s shocking to come face-to-face once more with her huge, shadowed eyes, the exhaustion and despair written on her gaunt face. I slide the photo back into its envelope and bury it at the bottom of a dresser drawer. This is one school photo that’s not going up on top of the piano.
But I’m also encouraged by this glimpse of how much progress Kitty’s made in the last six weeks, progress it’s hard to see on a day-to-day basis. Before anorexia, I tended to think about time in chunks—this week, this month, this season. This day. Now time has telescoped down into the intervals between Kitty’s meals and snacks. Each takes on its own character and rituals. Midmorning snack, for instance, which these days often comprises several slices of toast with cream cheese. Kitty arranges them on a large plate and methodically cuts them into squares with a knife and fork. She spears them, one at a time, and slowly chews them. It takes her twenty minutes to consume three slices of toast. Which feels like a long time when I’m sitting at the table with her, buttering my own toast (I’ve learned the best way to keep her eating is to eat along with her), but which is only half the time it took her to eat the same snack two weeks ago.
Progress. I’ll take it.
Each day has its rhythms, too. Eating seems easiest early in the day for Kitty, both physically and mentally. As the afternoon wears on she complains of stomachaches, indigestion. She bargains and pleads. The demon is far more apt to make an appearance between, say, five o’clock and bedtime than earlier in the day.
She’s particularly resistant to the daily milk shake, asking why she can’t have a smoothie instead. “Peaches and yogurt sounds delicious,” she says, and I’m tempted, because it’s such a pleasure to hear her say that any kind of food sounds delicious. But a peach smoothie is three hundred calories, tops, while a H?agen-Dazs milk shake is about a thousand. Kitty swears it’s not the calories; she just prefers the taste of a smoothie, honest.
We tell her no, sorry, milk shakes are a must. I ask Dr. Beth to “prescribe” a daily milk shake, and that helps. A little.
For many kids, the descent into anorexia begins with restrictions that could be reasonable. Vegetarianism, for instance. I was a vegetarian for fifteen years; I’m certainly not wedded to the idea of eating meat. But I’ve heard too many stories about teens who go meatless (and often vegan) right as they’re developing an eating disorder. Coincidence? I doubt it.
I’m convinced that Kitty’s preference for smoothies over milk shakes comes from the anorexia, not from her natural tastes. But when, exactly, did the shift begin? I think again of the sixth-grade “wellness” class that inspired her to cut out desserts. I bet other kids in that class cut back on sugar for a day or two, but Kitty’s probably the only one who stuck to her resolution for weeks and weeks. Was that the beginning?
Years ago, Walter Kaye discovered lower-than-normal levels of the neuropeptide galanin in the brains of people who’d recovered from anorexia. Galanin is a kind of amino acid made by the brain, and its role is to stimulate an appetite for fat. Low levels of galanin likely lead to an aversion to eating fat. I wonder how long the subjects in his study had been recovered. Six months? A year? Ten years? I wonder if levels of galanin ever recover. Or is it possible that people who go on to develop anorexia make less galanin in their brains from the start?
Will Kitty’s tastes change back, once she’s recovered? Will she ever dig in to a plate of sesame chicken with the same innocent pleasure? Will the eating disorder rob her of her original appetites? Or is that loss part of growing up in this culture—acquiring guilt and anxiety over every bite we put into our mouths? So many women eat the way Kitty does, avoiding fat and calories; do they do it out of a wish to be thin, or true preference?
A few years ago, researchers identified a fat receptor protein known as CD36, found on the surface of human cells and throughout the body, including on the surface of the tongue. Recent research done by Nada Abumrad, a professor of medicine at Washington University School of Medicine in St. Louis, suggests that some people may naturally have higher levels of CD36, which may lead to a taste (and even a craving) for fat. Maybe people like Kitty who develop anorexia are born with lower levels of CD36. Maybe the disease process of anorexia alters levels of these fat receptors. Or maybe anorexia masks Kitty’s true tastes.
Whatever the cause, what I want to know is simple: Will she ever again eat the way she used to?


As October proceeds, Kitty goes to school most days, if not eagerly then at least willingly. She spends part of her sessions alone with Ms. Susan. She seems livelier, more interested in the rest of the world. She still complains about stomach pain every time she eats. But she does eat everything we put in front of her.
One day she comes home from school with news: one of her friends is joining the school gymnastics team, and she wants to join too.
I love seeing her excited about something. One of anorexia’s most devastating consequences is isolation. But gymnastics? Everything in me says no. Gymnastics was part of how Kitty got where she is now—the emphasis on form and line and how she looked in a leotard. The hours of strenuous practice. The constantly sprained ankles and pulled tendons. The stress of competing in meets.
And something more: my sense that the coaches, however pleasant, however good with the girls, saw them as gymnasts rather than children and teens. What I mean is that they saw them as interchangeable elements of the team rather than as whole people. There wasn’t much warmth, despite the fact that most of the girls, including Kitty, spent ten or fifteen hours a week at the gym, spent years training, practicing, and competing.
All last spring, as Kitty began to slide, her coaches never raised the issue of an eating disorder, not to her and not to us. When I called the head coach to tell her that Kitty was in the ICU, I asked if she’d ever known a gymnast with an eating disorder before.
“Of course,” she said. “Unfortunately, it’s fairly common.”
“Did you know Kitty had a problem?”
The coach said cautiously, “I’m not surprised.”
“Why didn’t you say anything to us?”
Did they think we’d dismiss their concerns, get defensive? Did they worry that we’d pull Kitty off the team? Or maybe they didn’t consider it a big deal. Maybe eating disorders are so common in gymnastics, they’re not even worth discussing.
I really wanted to know. But the coach said nothing. “She won’t be coming back,” I said, and hung up.
“Just say you’ll consider the high school team,” begs Kitty now. That night Jamie and I talk it over, going around and around. My gut tells me it would be a mistake to say yes. She’s still way too thin, and emotionally fragile. We haven’t seen as much of the demon in the last ten days or so, but we have seen a lot of tears and anxiety. Jamie argues that maybe gymnastics will motivate her to recover. Plus, it’s hard for him to say no to something she cares about so passionately. It’s hard for me, too; I don’t want to be the killjoy. Maybe I’m overreacting. Maybe I’m letting my own fear get in the way of her recovery. Or maybe the emperor truly has no clothes.
Eventually we come to a compromise: the high school season doesn’t start for another month. We’ll let Kitty go to the gym once or twice a week to practice with her friend, as long as she keeps gaining weight. And we’ll ask Ms. Susan what she thinks of the idea.
Over the next few days, Kitty’s anxiety becomes palpable. At dinner one night, the demon digs in its heels over a plate of chicken Parmesan. Not-Kitty pushes the plate away so it skids into the middle of the table, chicken and buttered noodles flying everywhere. “Why are you doing this to me?” she shouts, her voice rising to an eerie scream, dripping with rage and self-loathing. The demon’s voice is relentless and reptilian, its vocabulary poorly developed but effective. I’ve heard this voice in my own head, though it’s more like me talking to myself—a mean version of me, sometimes a downright cruel me, but still me. Whereas the demon in Kitty seems so other, so different from her.
This concept may not be as bizarre as it sounds. More than thirty years ago, psychologist Julian Jaynes suggested that consciousness is a function of neuroanatomy—specifically, of the corpus callosum, the fibrous band that connects the right and left hemispheres of the brain.* His theory was that thousands of years earlier, before the two halves of the brain evolved a connection, they functioned independently. He pointed to the many biblical and literary references to earlier peoples hearing voices or seeing visions, which they interpreted as messages or visitations from God or the gods. In fact, Jaynes believed, they were communications from the other side of the brain.
Maybe there’s something to Jaynes’s theory. In people with schizophrenia, who often hear voices, the corpus callosum is typically smaller and narrower than in those without schizophrenia. ? I wonder if the demon might also be explained in terms of neuroanatomy. It certainly seems like Kitty’s experiencing an altered state of consciousness when the demon is at its loudest. It would be fascinating to see what areas of her brain light up at those moments.
The next night we see a slightly different face of the demon. Kitty goes to her first gymnastics practice and comes home upset because she’s lost her skills. She’s thrust into that altered state where she spins around and around—in this case, over the fact that she’s lost her conditioning, she can’t do gymnastics, she’s no good, it was the only thing she’s looked forward to, it was the only thing she was good at and now she’s not. On and on she worries and obsesses. This time, maybe because I’m paying attention, I hear the moment when her distress over gymnastics flips into anxiety about eating. She goes from back handsprings to breakfast in one breath, worrying that if I make her have cereal the next morning, the milk will upset her stomach and then how can she possibly drink a milk shake tomorrow because that will also upset her stomach.
“I’m serving eggs tomorrow morning for breakfast,” I tell her, hoping to allay a bit of the anxiety.
“I’m afraid of eggs!”
“Why don’t we talk about what’s really upsetting you?” I say.
Out comes a gush of words. She says Jamie’s mad at her because she needs him to sit in the kitchen with her at lunch, and now we all hate her, she’s done nothing but cause us problems, she is stupid and fat and ugly. Oh, and why do I hate gymnastics when it means so much to her?
“I don’t hate gymnastics,” I tell her. “I hate the anorexia.”
In a flash her tone turns from self-pity to rage. “Well, the anorexia is part of me,” she says furiously, “and you hate the anorexia, so you must hate me!”
“No, I don’t hate you, I love you,” I say as calmly as I can, but it’s like she’s Helen Keller and I’m no miracle worker. She doesn’t see me, she doesn’t hear me, she’s locked in, lost in her own terrible world, and I would give anything in my power right now to snap her out of it.
“Why do you hate gymnastics?” Kitty cries. Then she leaps from the table, grabs a pillow from the living room couch, and starts stuffing it into her mouth. I grab it and yank it out; I don’t want her to make herself throw up.
“I don’t hate gymnastics!” I yell. This is a lie. I do hate gymnastics, and gyms, and coaches, and leotards, and every last thing associated with the sport.
Kitty glares at me. “Gymnastics isn’t to blame for my illness,” she yells. “I am! I’m stupid and fat and ugly! I’m a horrible person and everyone hates me!” She hits herself in the head, hard, with her open palm. I grab for her arm but miss. She hits herself two or three more times before I get hold of her. She’s much stronger than she looks—much stronger than she should be, and despite her frailty she could get away from me if she really tried. But she’s not trying.
After what feels like an hour, but is probably three or four minutes, she collapses in my lap. “You want to take away the only thing I care about,” she sobs.
“I don’t,” I say, stroking her hair. “But right now the most important thing is your health. That’s what I care about.”
When she is finally asleep, I sit in the living room, lights off, feeling like a failure. I said all the wrong things tonight. I made things worse, not better. I yelled at my daughter. I couldn’t help her.
Now I understand what the Maudsley people mean when they say it’s not helpful to cast blame. Blame makes you sit alone in the dark and feel like your skin has been flayed. Blame takes away your power and makes you into a small scolded child, when what you need is to get bigger. So big that you can reach down and swat away what plagues you. Big enough to stare down the demon no matter what form it takes.
It’s self-indulgent to sit in the dark and feel sorry for myself when Kitty’s the one who’s got the demon inside her, who can’t get away from it. Who feels, as she said tonight, like it’s part of her, a notion that makes me sick to my stomach.
That’s what most “experts” in this field seem to believe: once an anorexic, always an anorexic. That it’s like alcoholism, something you have to manage, actively or not, for the rest of your life. The day she diagnosed Kitty, Dr. Beth told us Kitty would feel much better in a year. She said she knows people who had anorexia in their teens and twenties, got better, and left it behind. Who didn’t feel it always lurking somewhere inside them. That was what I wanted to hear. But I wonder, now, if it was true.


I’m relieved when Kitty decides not to go to the gym later in the week. She says she’s sore from the earlier practice. Instead, she volunteers with the Latin Club after school, and when I pick her up she’s smiling. This is what I want for her—this kind of social and emotional connection with the rest of the world.
The next week the three of us meet with Ms. Susan to talk about the gymnastics team. I love this woman: after listening to Kitty talk about why she wants to join the team, she says, “There’s a lot of stress that comes from competing. I don’t think it’s a good choice for you right now.”
“But I love competing!” says Kitty. “It’s not stressful!”
“You love it, but maybe it’s not so good for you,” says Ms. Susan. She points out that any sport where you have to be in a leotard or bathing suit isn’t a good one for someone in recovery from an eating disorder, because it puts a lot of emphasis on the body, which is the last thing Kitty needs.
“You want me to sit around and do nothing!” Kitty snaps. I’m glad she’s venting her frustration here instead of saving it for when we get home.
Ms. Susan talks about the need to find a sense of flow in life, about the intersection between what you’re good at and what’s good for you. She tells Kitty this is her chance to explore other interests, to think about what makes her feel calm and centered. She tells Jamie and me that our instincts are good and that we should trust them. I think I want to marry her. Or at least get this on tape so I can play it every day.
Ms. Susan speaks about using the anorexia as an opportunity for Kitty to go deeper, to look beyond the surface. For the rest of the session she talks to Kitty, and I really do wish I’d brought a tape recorder, because what she’s saying feels true and right, and I don’t think Kitty can hear it now. She’s still too impaired, too much under the spell of the demon and its distractions. Daniel le Grange told me about a mentor of his who used to say that if you do intensive psychotherapy with someone with anorexia, you wind up with an insightful corpse, because without enough glucose the brain can’t process or think properly.
Sitting in Ms. Susan’s office, I can see that Kitty is on a path, as we all are, and that as much as I wish otherwise, anorexia is part of that path. I don’t believe it has to define her, now or later. But I realize I’ve been thinking about the eating disorder as something to get through and leave behind, and it may not be that simple. Even if Kitty gains the weight, gets well, and moves forward, this will always be part of her history and her journey.
I can’t see the future and I don’t know what part anorexia will play in Kitty’s life. If all goes well, if we’re lucky, this will be it. But I also know from my own life how long-lasting the experiences of childhood and adolescence can be. The events of these years shape our lives in powerful ways. For better and for worse.
Anorexia will be one of those events for Kitty, even if she’s never actively ill again. I think that’s part of what Ms. Susan is getting at: Kitty will have to integrate the whole of this experience—all the feelings and events, the terrors and the lessons—into the rest of her life. It’s a process that will take years.
After the session, when the decision about gymnastics has been made once and for all, Kitty says she’s upset and angry. But she seems relieved. As if what she wanted all along was for us to simply say no. Remember this, I tell myself. Remember to look past what Kitty says and into what she feels. Because clearly, they’re not always the same.


In the third week of October, Kitty gains another two pounds. She’s now within eight or nine pounds of her target weight. Around the same time we also get the first bills for her treatment.
The state we live in does not have mental health parity, and the federal parity bill is still several years in the future. Which means that our insurance company covers only $1,800 a year of mental health expenses. Back in June, when I started looking for a therapist, I paged through our plan’s provider list and wondered why I didn’t see any mental health listings. It took a while to realize that they were listed under “behavioral health,” a term that suggests that good mental health is merely a function of changing your behavior. It would be funny except for the deeper implication: that mental health is a matter of choice, and if you make the right choices, if you choose the “right” behaviors, presto! You’ll be healthy.
This linguistic sleight of hand infuriates me, especially as I come to understand that we blew through our $1,800 “allowance” in the first month of Kitty’s treatment.
Kitty’s visits to Dr. Beth are covered—with the usual copay, of course—because she’s a pediatrician, not a mental health provider. (Later I find out that Dr. Beth gets the same amount of money from the insurance company whether Kitty sees her once a year or every day, meaning that our weekly two-hour sessions are essentially freebies.) But everything else goes on the behavioral health balance sheet:
Weekly visits to Dr. Newbie
(whom the insurance company forced us to see): $220 each
Visit to a nutritionist: $100
The first therapist we tried: $150
Weekly sessions with Ms. Susan: $135 apiece
Apparently we’ve been on our own, financially speaking, since mid-August.
On the other hand, Kitty’s five-day hospital admission, including two days in the ICU, was nearly all covered, all $12,000 of it. I suppose I should be grateful we don’t have to pay for that, too, but I’m pissed. Because I really don’t understand: Why is mental health care not covered the way physical health care is? We’re creatures of body and breath, blood and bone, not disconnected minds in jars. The brain is an organ, same as the liver or the heart. Your heart takes care of getting oxygen to your cells; your brain takes care of how you move, feel, and think. When it comes down to it, what’s the difference? Why does one bodily function deserve care while another doesn’t?
Of course I know the real reason insurance companies don’t cover mental health care: because they don’t have to, at least in states like ours that don’t have parity. Even in states like New Jersey, which has a mental health parity bill, insurance companies look for ways to weasel out of paying. They divide brain disorders into what they call biologically and nonbiologically based illnesses. In this ridiculously random categorization, schizophrenia is biologically based; eating disorders are not.*
The mental health profession unwittingly reinforces this kind of discrimination, especially when it comes to eating disorders, by maintaining that anorexia and bulimia are caused by psychodynamics. These “experts” who insist that eating disorders are psychological in origin play right into the hands of insurers, who use this to put eating disorders firmly into the “nonbiological” category.
Even if eating disorders were psychological, so what? They damage the body, sometimes beyond repair. They cause physical pain and suffering. People die from them. Do we somehow believe that people with mental illnesses deserve to suffer? That they don’t deserve to get better? Because that’s how we act. We act like it’s OK for families whose children have autism or schizophrenia or anorexia to bankrupt themselves trying to get care for their kids or watch their children deteriorate because they can’t afford treatment.
I plague our insurance company with complaints. I cry on the phone—out of frustration, mostly, but they don’t know that. Eventually our behavioral health “consultant” grants us another $400—$400—for which I must kowtow at every opportunity. She now begins all our conversations by reminding me how generous the insurance company has been to give us this “extra” coverage, which frankly will take us through another week and a half and then dump us right back on the road to financial ruin. If Kitty winds up in an inpatient residential treatment center, then we’re really screwed: one to two thousand dollars a day, of which our insurance will cover six days. Six days, out of, say, a forty-five-day admission. Thirty-nine uncovered days at the conservative estimate of $1,000 a day equals $39,000. Where would we get the money?
And we’re in good shape compared with other families. I’m probably not going to lose my job because of Kitty’s illness. If I worked elsewhere—at a law firm, say, or a 7-Eleven—I’d have been fired long ago or would have had my pay docked. We’re lucky, relatively speaking, but the situation is still unfair. Besides, these months of guerrilla warfare against an enemy I can’t see or understand have left me spoiling for a fight.
And so I make phone calls to the insurance commissioner, the president of our insurance company, our legislators, the local branch of the National Alliance for Mental Illness. I call Kitty Westin, who brought a lawsuit against her insurance company, Blue Cross Blue Shield, after her daughter, Anna, was denied treatment for an eating disorder and committed suicide. Westin settled out of court in June 2001, and part of the settlement was that BCBS in Minnesota must now cover eating disorders the way they cover broken legs and other undeniably physical ailments. After the settlement, several other big insurers in the state voluntarily changed their coverage too, afraid of similar suits they couldn’t win. Westin, who created a foundation in her daughter’s name, encourages me to push for legal action. “That’s the only way things will ever change,” she tells me.
The president of the insurance company doesn’t return my calls, surprise surprise; neither do the legislators. I tell someone at the insurance commissioner’s office about Kitty Westin, and he tells me we have no case. Minnesota has mental health parity laws; our state doesn’t. Our insurers have fulfilled their legal obligations and then some. “So that’s it?” I say. “We have no recourse? We’re supposed to go home and be grateful we’re not in debt for $100,000?” Pretty much.
The only thing left to do is file a grievance with the insurance company and ask for an appeals hearing, which they have to give us. Dr. Beth says she’ll come to the hearing if she can. But the insurance company gives me only a few days’ notice, and she can’t rearrange her schedule.
So on the appointed afternoon I drive thirty miles to the company’s brand-new world headquarters, which looks incongruous in its cornfield, on the outskirts of a small rural town. And at the appointed time I am ushered in to a conference room and seated at the head of a table full of people, none of whom introduce themselves. I’ve got ten minutes, so I talk fast. I roll out facts and statistics: average length of illness is five to seven years, average anorexia patient requires multiple hospital admissions, a third become chronic. I detail the high costs of treating chronic anorexia. I hand out copies of research studies and scientific papers, making the case that eating disorders are physiological, not psychological, and should be covered the way pneumonia and every other disease is covered. I recount an urgent, abbreviated version of Kitty’s illness. I describe family-based treatment, contrast the thousands of dollars spent on Kitty’s hospital stay with the relatively low cost of FBT, and suggest that covering a few thousand dollars of therapy now will save them money in the long run.
Once or twice I look up from my notes and see people nodding thoughtfully. I have no idea who they are. I’ve been told there are several doctors in the room, a “patient advocate” (though as far as I can see no one at this table is on my side), some administrators, and I don’t know who else. I finish in exactly ten minutes, because an impatient-looking man near the head of the table is looking at his watch and I have the feeling he would take great pleasure in cutting me off midsentence. I stand up, collect my papers, thank the roomful of anonymous faces, and walk out on trembling legs.
The next morning—fifteen hours later—I get a letter from the insurance company saying they have “carefully considered” our case and have denied our appeal. Which means that the denial letter went out within an hour of my leaving the office yesterday. Considering that someone had to fill in the blanks on the form letter, print it, sign it, and mail it, that letter must have been ready to go before I walked into the room.
For all I know, that room was full of actors who populate grievance hearings for a living.
Either way, the whole thing was a sham. An exercise in futility. We’ll find ways to pay for Kitty’s treatment. But what about the families who can’t, whose children go untreated because they can’t take time off work to refeed them, whose insurance doesn’t cover other treatments? Or the families who bankrupt themselves paying for two or three or five stints in residential treatment, who whip through their retirement funds, who take out second and third mortgages on their houses, who run up their credit cards and wind up so deep in debt it would take several lifetimes to dig out?
I don’t have an answer. But I know right from wrong. And this is wrong. Very wrong.