Brave Girl Eating (25 page)

“What did you have for breakfast?”

“I can handle it, Mom!”

Around Mother's Day I went out for a weekend visit, at Kitty's request. When I got out of the airport taxi, she was standing at the door, waiting for me. And even from the curb I could see why she wanted me to come out. I went to her, put my arms around her newly bony shoulders. I wanted to weep. I wanted to lay my daughter down as if she were made of china and take care of her. I looked into her eyes, and I saw that she knew what had happened. She was aware. Now I was too.

That weekend, we talked and talked. Kitty said she knew she'd
lost a little weight, but she was on top of things, she could turn it around. I thought it was more than a little—it had to be at least fifteen pounds. How in the world did she lose fifteen pounds in less than two months?

I took her out for Thai food and she ate with gusto. I relaxed a little. But for the rest of the weekend, I watched her restrict without even knowing it. It was little things, like not putting butter on bread, eating salad with no dressing, eschewing anything with cheese. She was too full for pie, she said, eating half a peach instead.

My last morning, I told her what I saw: that whether she intended it or not, whether she thought I equated everything with food or not, she was not eating enough, or enough of the right foods. We talked through some meal possibilities, things she could cook or buy easily. “I know I can do it, Mom,” she told me, and I wanted so badly to believe her.

A month later, we brought her home, another ten pounds lighter, and began again the work of loosening the demon's claws.

 

Over the last four
years, I've talked to many families who have gone through some version of our story: their child recovered from anorexia at twelve or thirteen or fourteen and then relapsed at college or living independently for the first time. Every teen has to learn to take care of herself; inevitably, they make mistakes along the way.

“I just wanted to be normal,” Kitty told me on her first day home. “I didn't want to have to think about food or anorexia. I just wanted to live like a regular person and not always be worrying about how much I was eating.”

I could understand her longing to leave anorexia behind, to not worry about it, to be “normal.” I told her if she had diabetes, she'd have to test her blood sugar every day; at first it would be a pain, but she'd get used to it. It would become just one of the things she had to do, like brushing her teeth. It would become part of “normal” for her. Nearly all of us have some aspect of our lives that we have to track like this.

One of the worst moments this time around came when Kitty confessed that three years earlier, she'd sewed weights into a bra, and wore it every time we weighed her. That's why she needed to know ahead of time before a trip to Dr. Beth's. Jamie was right about the weigh-ins all along.

I didn't even know she could sew.

She said she'd sewed five or six pounds of weights into the bra, which meant she was never even close to the target weight we set. Which explained why she so often seemed too close to the edge. And, maybe, how she lost so much weight so fast.

It was harder, this time around, to separate Kitty from the illness, harder to tell the demon's voice from her own. Kitty was eighteen, not fourteen, more sophisticated, more grown-up, both more and less aware of the fact that she was ill, of the distortions the illness imposed on her thoughts and actions. Last time, I'd worried that going through the refeeding process would damage our relationship irrevocably. It didn't, a fact I knew only from overhearing Kitty tell the mother of another girl with anorexia, “You need to do what my parents did. They saved my life.”

This time around, she was stronger and more resourceful; so was the illness. This time even more than the last, Jamie and I had to block our ears to the demon's imprecations, stay calm, and keep feeding our daughter. I thought of Ulysses tied to the mast so he
couldn't change course, seduced by the song of the Sirens. The metaphor seemed apt, only instead of Sirens we heard the voice of the illness:
I could recover much better somewhere else. You're making it harder, not easier. I can take care of this myself; give me another chance!
We considered sending Kitty to some kind of residential program. Cost was an obstacle, but even more than money was the knowledge that what she really needed was food and the patient scrutiny of people who loved her. Who
knew
her better than anyone else. Who weren't fooled, or at least not as often, by the demon's tricks and manipulations.

Many parents of teens with anorexia—especially older teens—are accused at some point of hanging on to the disease too long. Of not wanting to let go of their adolescent. Of missing the feeling of being needed, or the attention they got from doctors, or…fill in the blank. In my experience, this is rarely if ever true. Everything I know about eating disorders—that they're anosognosic, ego-syntonic, that they cloud the mind and alter the body's chemistry—is still true now that Kitty's over eighteen. The essential nature of the illness doesn't change once your child crosses the magical age line.

This is a big part of what makes family-based treatment more challenging for families with older teenagers. We're more vulnerable to the criticism of being overly controlling, because eighteen-year-olds in this culture are supposed to go off, be independent, take care (more or less) of themselves. FBT goes against the cultural grain even more for an eighteen-year-old than it does for a twelve-or fourteen-year-old.

And yet I've come to learn, through hard experience, that people with eating disorders as well as other mental disorders aren't always (or even usually) best suited to make choices about their recoveries or lives. I know this is a statement that will make some sufferers
angry; they'll say, as Kitty said to me, that I'm not respecting them. That I'm pooh-poohing their feelings, sweeping them all into the box labeled eating disorders. That's not my intention at all.

In December 2007, the NYU Study Center caused a firestorm of protest with a public awareness campaign about childhood psychiatric illnesses and learning disorders. The concept was that mental illnesses hold children hostage; a series of “ransom notes” were designed to raise awareness of the realities of mental illness. For instance, one note read, “We have your daughter. We are forcing her to throw up after every meal she eats. It's only going to get worse….
Bulimia.
” Another: “We have taken your son. We have imprisoned him in a maze of darkness with no hope of ever getting out. Do nothing and see what happens….
Depression.
”

The campaign kicked up so much backlash that NYU withdrew it after only a week. I think one reason it hit such a collective nerve is that it challenged our culture's deeply held notion that we're in control. My mother-in-law, who suffered from mild depression, used to say, “When I feel myself beginning to be depressed, I just talk to myself. I say, You're not going to let that happen again.” I'm glad that strategy worked for her. But we can't always control how we think or feel or behave. The take-yourself-in-hand line of thinking is cruelly ineffective for eating disorders as well as for many other mental illnesses, and especially for children, whose ability to reason, think deductively, synthesize information, and make judgments continues to develop until they're in their midtwenties.

As I write this, Kitty has just started college, a semester later than planned. She's not fully recovered from this relapse but she's made good progress and is working hard. Jamie and I agonized over whether to send her. She wanted to go and demonstrated that she was capable of gaining weight on her own. When she was four
teen, there was no question of letting her go anywhere until she was fully recovered. At eighteen, the process of recovery becomes by necessity more collaborative—up to a point. It's one thing to allow for some autonomy, to anticipate some bumps in the road. It's quite another to sit back and watch the demon take hold once more. That we're not prepared to do. We've built as much support as we can into her college experience; now we will wait, and watch, and be ready, knowing that the longer the demon lives inside her, the more comfortable it gets. The more entrenched the eating disorder, the harder it will be for her to achieve true recovery.

Kitty knows that if she doesn't continue to recover, we'll bring her home to finish the work here. Because the essential question remains the same now as it was four years ago: Do we want her to have the life she was meant to have, full of color and hope and joy? Or are we willing to settle for the gray half-life that comes from living with the demon?

The rest of the world may think we're being overprotective. We know the truth: we are saving our daughter's life, if not literally, then in every way that counts. We'll do whatever it takes to make sure Kitty gets well and stays well, whether she's eighteen or thirty-eight. That's what families do.

Web sites

Maudsley Parents

www.maudsleyparents.org

 

National Eating Disorders Association

www.nationaleatingdisorders.org

Books

Brumberg, Joan Jacobs.
Fasting Girls: The History of Anorexia Nervosa
. New York: Vintage Books, 2000.

 

Collins, Laura.
Eating with Your Anorexic: How My Child Recovered Through Family-Based Treatment and Yours Can Too
. New York: McGraw-Hill, 2005.

 

Keys, Ancel, Josef Brožek, Austin Henschel, Olaf Mickelsen, and Henry Taylor.
The Biology of Human Starvation
. Minneapolis: University of Minnesota Press, 1950.

 

Lock, James, and Daniel le Grange.
Help Your Teenager Beat an Eating Disorder
. New York: Guilford Press, 2005.

 

Russell, Sharman Apt.
Hunger: An Unnatural History
. New York: Basic Books, 2005.

 

Treasure, Janet, Ulrike Schmidt, and Eric van Furth.
Handbook of Eating Disorders.
2nd ed. Chichester, England: John Wiley & Sons, 2003.

 

Vandereycken, Walter, and Ron van Deth.
From Fasting Saints to Anorexic Girls: The History of Self-Starvation.
New York: New York University Press, 1994.

Selected Articles and Studies

Allan, Rosemary, Reena Sharma, Bhumika Sangani, Philippa Hugo, Ian Frampton, Helen Mason, and Bryan Lask. “Predicting the Weight Gain Required for Recovery from Anorexia Nervosa with Pelvic Ultrasonography: An Evidence-Based Approach.”
European Eating Disorders Review
18, no. 1 (2010): 43–48.

 

Arkell, James, and Paul Robinson. “A Pilot Case Using Qualitative and Quantitative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder.”
International Journal of Eating Disorders
41, no. 7 (2008): 650–56.

 

Attia, Evelyn, and Christina Roberto. “Should Amenorrhea Be a Diagnostic Criterion for Anorexia Nervosa?”
International Journal of Eating Disorders
42, no. 7 (2009): 581–89.

 

Attia, Evelyn, and Timothy Walsh. “Behavioral Management for Anorexia Nervosa.”
The New England Journal of Medicine
360, no. 5 (2009): 500–506.

 

Barboriak, Joseph, and Arthur Wilson. “Effects of Diet on Self-Starvation in the Rat.”
The Journal of Nutrition
102 (1972): 1543–46.

 

Bardone-Cone, Anna, Katrina Sturm, Melissa Lawson, D. Paul Robinson, and Roma Smith. “Perfectionism Across Stages of Recovery from Eating Disorders.”
International Journal of Eating Disorders
43, no. 2 (2009): 139–48.

 

Casanueva, Felipe, Carlos Dieguez, Vera Popovic, Roberto Peino, Robert V. Considine, and Jose F. Caro. “Serum Immunoreactive Leptin Concentrations in Patients with Anorexia Nervosa Before and After Partial Weight Recovery.”
Biochemical and Molecular Medicine
60 (1997): 116–20.

 

Cordero, Elizabeth, and Tania Israel. “Parents as Protective Factors in Eating Problems of College Women.”
Eating Disorders
17 (2009): 146–61.

 

Couturier, Jennifer, and James Lock. “What Is Recovery in Adolescent Anorexia Nervosa?”
International Journal of Eating Disorders
39 (2006): 550–55.

 

Crow, Scott, James Mitchell, James Roerig, and Kristine Steffen. “What Potential Role Is There for Medication Treatment in Anorexia Nervosa?”
International Journal of Eating Disorders
42, no. 1 (2009): 1–8.

 

Dellava, Jocilyn, Peggy Policastro, and Daniel Hoffman. “Energy Metabolism and Body Composition in Long-Term Recovery from Anorexia Nervosa.”
International Journal of Eating Disorders
42, no. 2 (2009): 415–21.

 

Ehrlich, Stefan, Roland Burghardt, Deike Weiss, Harriet Salbach-Andrae, Eugenia Maria Craciun, Klaus Goldhahn, Burghard F. Klapp, and Ulrike Lehmkuhl. “Glial and Neuronal Damage Markers in Patients with Anorexia Nervosa.” Special issue:
Biological Child and Adolescent Psychiatry
115, no. 6 (2008): 921–27.

 

Ehrlich, Stefan, Leonora Franke, Nora Schneider, Harriet Salbach-Andrae, Regina Schott, Eugenia M. Craciun, Ernst Pfeiffer, Ralf Uebelhack, and Ulrike Lehmkuhl. “Aromatic Amino Acids in Weight-Recovered Fe
males with Anorexia Nervosa.”
International Journal of Eating Disorders
42, no. 2 (2009): 166–72.

 

Fessler, Daniel M. T. “The Implications of Starvation-Induced Psychological Changes for the Ethical Treatment of Hunger Strikers.”
Journal of Medical Ethics
29 (2003): 243–47.

 

Garner, David M. “The Effects of Starvation on Behavior: Implications for Eating Disorders.”
Handbook for Treatment of Eating Disorders.
New York: Guilford Press, 1997.

 

Goode, Erica. “Anorexia Strategy: Family as Doctor.”
New York Times,
June 11, 2002.

 

Greenleaf, Christy, Trent Petrie, Jennifer Carter, and Justine Reel. “Female Collegiate Athletes: Prevalence of Eating Disorders and Disordered Eating Behaviors.”
Journal of American College Health
57, no. 5 (2009): 489–95.

 

Guisinger, Shan. “An Evolutionary Explanation for Anorexia?”
Psychological Review
110, no. 4 (2004): 745–61.

 

Katzman, Debra K., Bruce Christensen, A. R. Young, and Robert B. Zipursky. “Starving the Brain: Structural Abnormalities in Cognitive Impairment in Adolescents with Anorexia Nervosa.”
Seminars in Clinical Neuropsychiatry
6, no. 2 (2001): 146–52.

 

Kaye, Walter. “Neurobiology of Anorexia and Bulimia Nervosa.”
Physiology & Behavior
94 (2008): 121–35.

 

Kaye, Walter, Cynthia M. Bulik, Katherine Plotnicov, Laura Thornton, Bernie Devlin, Manfred M. Fichter, Janet Treasure et al. “The Genetics of Anorexia Nervosa Collaborative Study: Methods and Sample Description.”
International Journal of Eating Disorders
41 (2008): 289–300.

 

Kaye, Walter, Guido K. Frank, and Claire McConaha. “Altered Dopamine Activity After Recovery from Restricting-Type Anorexia Nervosa.”
Neuropsychopharmacology
21 (1999): 503–6.

 

Kaye, Walter, Julie Fudge, and Martin Paulus. “New Insights into Symptoms and Neurocircuit Function of Anorexia Nervosa.”
Nature Reviews Neuroscience
10 (2009): 573–84.

 

Kaye, Walter, Harry Gwirtsman, Ted George, Michael H. Ebert, and Rosemary Petersen. “Caloric Consumption and Activity Levels After Weight Recovery in Anorexia Nervosa: A Prolonged Delay in Normalization.”
International Journal of Eating Disorders
5, no. 3 (1986): 489–502.

 

Klump, Kelly, and Cynthia Bulik. “Academy for Eating Disorders Position Paper: Eating Disorders Are Serious Mental Illnesses.”
International Journal of Eating Disorders
42, no. 2 (2009): 97–103.

 

Lambe, Evelyn. K., Debra Katzman, David J. Mikulis, Sidney H. Kennedy, and Robert B. Zipursky. “Cerebral Gray Matter Volume Deficits After Weight Recovery from Anorexia Nervosa.”
Archives of Pediatric Adolescent Medicine
54, no. 6 (1997): 537–42.

 

Lask, Bryan. “Anorexia Nervosa—Irony, Misnomer and Paradox.”
European Eating Disorders Review
17 (2009): 1–4.

 

Le Grange, Daniel. “Family Therapy for Adolescent Anorexia Nervosa.”
Journal of Clinical Psychology
5 (1999): 727–40.

 

Le Grange, Daniel, and Ivan Eisler. “Family Interventions in Adolescent Anorexia Nervosa.”
Child & Adolescent Psychiatric Clinics of North America
18 (2008): 159–73.

 

Le Grange, Daniel, James Lock, Kathryn Loeb, and Dasha Nicholls. “Academy for Eating Disorders Position Paper: The Role of the Family in Eating Disorders.”
International Journal of Eating Disorders
43, no. 1 (2010): 1–5.

 

Lear, Scott, Robert P. Pauly, and C. Laird Birmingham. “Body Fat, Caloric Intake, and Plasma Leptin Levels in Women with Anorexia Nervosa.”
International Journal of Eating Disorders
26, no. 3 (1999): 283–88.

Lilenfield, Lisa, Stephen Wonderlich, Lawrence P. Riso, Ross Crosby, and James Mitchell. “Eating Disorders and Personality: A Methodological and Empirical Review.”
Clinical Psychology Review
26 (2006): 299–320.

 

Lock, James, William Stewart Agras, Susan Bryson, and Helena C. Kraemer. “A Comparison of Short-and Long-Term Family Therapy for Adolescent Anorexia Nervosa.”
Journal of the American Academy of Child Psychiatry
44, no. 7 (2005): 632–39.

 

Lock, James, Jennifer Couturier, and William Stewart Agras. “Comparison of Long-Term Outcomes in Adolescents with Anorexia Nervosa Treated with Family Therapy.”
Journal of the American Academy of Child Psychiatry
45, no. 6 (2006): 666–72.

 

Lock, James, and Daniel le Grange. “Can Family-Based Treatment Be Manualized?”
Journal of Psychotherapy Practice and Research
10 (2001): 253–61.

 

Mahaut, Stéphanie, Yvan Dumont, Alain Fournier, Rémi Quirion, and Emmanuel Moyse. “Neuropeptide Y Receptor Subtypes in the Dorsal Vagal Complex Under Acute Feeding Adaptation in the Adult Rat.”
Neuropeptides
44, no. 2 (2010): 77–86.

 

Mayer, Laurel, Christina A. Roberto, Deborah Glasofer, Sarah Fischer Etu, Dympna Gallagher, Jack Wang, Steven B. Heymsfield, Richard N. Pierson Jr., Evelyn Attia, Michael Devlin, and Timothy Walsh. “Does Percent Body Fat Predict Outcome in Anorexia Nervosa?”
American Journal of Psychiatry
164, no. 6 (2007): 970–72.

 

Robin, Arthur, Patricia T. Siegel, and Anne Moye. “Family Versus Individual Therapy for Anorexia: Impact on Family Conflict.”
International Journal of Eating Disorders
17, no. 4 (1995): 313–32.

 

Sachdev, Perminder, Naresh Mondraty, Wei Wen, and Kylie Gulliford. “Brains of Anorexia Nervosa Patients Process Self-Images Differently from Non-Self-Images: An fMRI Study.”
Neuropsychologia
46 (2008): 2161–68.

 

Sim, Leslie, Jason H. Homme, Aida N. Lteif, Jennifer L. Vande Voort, Kathryn M. Schak, and Jarrod Ellingson. “Family Functioning and Maternal Distress in Adolescent Girls with Anorexia Nervosa.”
International Journal of Eating Disorders
42 (2009): 531–39.

 

Steinhausen, Hans-Christoph. “The Outcome of Anorexia Nervosa in the 20th Century.”
American Journal of Psychiatry
159, no. 8 (2002): 1284–93.

 

Steinhausen, Hans-Christoph, Maria Grigoroiu-Serbanescu, Svetlana Boyadjieva, Klaus-Jürgen Neumärker, and Christa Winkler Metzke. “The Relevance of Body Weight in the Medium-Term to Long-Term Course of Adolescent Anorexia Nervosa.”
International Journal of Eating Disorders
42, no. 1 (2009): 19–25.

 

Treasure, Janet. “Getting Beneath the Phenotype of Anorexia Nervosa: The Search for Viable Endophenotypes and Genotypes.”
Canadian Journal of Psychiatry
52, no. 4 (2007): 212–19.

 

Wagner, Angela, Howard Aizenstein, Vijay K. Venkatraman, Julie Fudge, J. Christopher May, Laura Mazurkewicz, Guido K. Frank et al. “Altered Reward Processing in Women Recovered from Anorexia Nervosa.”
American Journal of Psychiatry
164, no. 12 (2007): 1842–49.

 

Wagner, Angela, Phil Greer, Ursula F. Bailer, Guido K. Frank, Shannan E. Henry, Karen Putnam, and Carolyn C. Meltzer et al. “Normal Brain Tissue Volumes After Long-Term Recovery in Anorexia and Bulimia Nervosa.”
Biological Psychiatry
59, no. 3 (2006): 291–93.

 

Wagner, Angela, and Walter Kaye. “Altered Insula Response to Taste Stimuli in Individuals Recovered from Restricting-Type Anorexia Nervosa.”
Neuropsychopharmacology
33 (2008): 513–23.

 

Wagner, Angela, Matthias Ruf, Dieter F. Braus, and Martin H. Schmidt. “Neuronal Activity Changes and Body Image Distortion in Anorexia Nervosa.”
NeuroReport
14, no. 17 (2003): 2193–97.

 

Weltzin, Theodore E., Madelyn H. Fernstrom, Donna Hansen, Claire McConaha, and Walter Kaye. “Abnormal Caloric Requirements for Weight
Maintenance in Patients with Anorexia and Bulimia Nervosa.”
American Journal of Psychiatry
148, no. 12 (1991): 1675–82.

 

Zucker, Nancy, Molly Losh, Cynthia M. Bulik, Kevin S. LaBar, Joseph Piven, and Kevin A. Pelphrey. “Anorexia Nervosa and Autism Spectrum Disorders: Guided Investigation of Social Cognitive Endophenotypes.”
Psychological Bulletin
133, no. 6 (2007): 976–1006.