Hungry (32 page)

Similarly, when patients and families Google “eating disorders,” we find a gusher of information and likely don’t drill down to the source. Desperate for help, we may not notice the fine-print disclaimer that says something like, “Referral information is supplied solely by the providers themselves and is not checked or warranted by this website. We do not endorse or recommend practitioners.”

Profit or nonprofit, many websites function like a club. Providers pay a membership fee that entitles them to list themselves on the site, in the language of their choice. The sites offer tips to professionals on how to snag more clients by, for example, advertising on the website. The treatment center that’s “peacefully situated on thirty-six wooded acres next to its own private five-acre lake” may be a marketer’s hallucination. Phrasing like “dedicated to delivering the best possible service available and a broad spectrum of treatment modalities” is open to interpretation. The site may list famous, well-respected centers such as the Menninger Clinic in Houston as well as the bottom-feeders.

All compete for our ED dollars, whether we pay directly or are blessed with health insurance covering behavioral health, the industry term for mental health. They are professionals if somebody pays them. They may genuinely care for patients, but they depend on insurance, donations, and endowments—or tens of thousands of dollars from the family.

Hospitals and clinics have budgetary concerns when recommending one treatment over another. They may have invested in new equipment and need to justify the expense by using it a lot. But if the experienced physician recommends a procedure, puts his hand to his chest like a politician promising truthfulness—a gesture we saw often—and says if this were his daughter, he’d go for it, it’s hard to stay rational. We did get second opinions, but in our experience, they were expensive time sinks. Doctors backed each other up.

To rule out a brain tumor, physicians suggested Lisa undergo an MRI, which requires the patient to lie still in a long tubular scanner. At the time Lisa was taking medications that made her body shake uncontrollably. Did an MRI make any sense? We weren’t sure, but a doctor had said “brain tumor” so we went for it. Lisa couldn’t stay still long enough and the result was inconclusive, except that at a time when Lisa felt that she couldn’t do anything right, that in fact she was the worst person in the world, she got to feel bad about failing another test.

My deeper concern with health professionals treating eating disorders is whether they are open-minded. Behavioral health is atomized into specialties that may prescribe antipsychotic medications or dialectical behavioral therapy (DBT), a twelve-step program based on Alcoholics Anonymous, or a $1,300-a-day residential treatment facility on the beach. For eating disorders, alternative treatments, such as acupuncture, equine therapy, herbs, and probiotics, are becoming more widely available. In addition, discoveries in brain chemistry are very promising, using electroencephalogram (EEG) data to help guide treatment decisions. We looked into that for Lisa.

If you’re lucky, you can find a multidisciplinary treatment team of experts who are used to working together. They might include a psychiatrist, psychologist, dietitian, and social worker. Too often, though, the specialists speak different languages. They don’t even hold visas to each others’ countries. Health professionals, like lawyers, naturally compete with and often openly disdain each other, in a way that makes their effectiveness very hard to assess. Are they good or just self-confident? With all the controversy around the causes and treatments of eating disorders, and the wide range of people affected, patients and parents may simply have to try something new or untested or unproven. A treatment may be evidence based or just based on an individual practitioner’s experience, and still the best hope for your child’s recovery is that it may take years.

 

lisa:
In high school my parents found me a tremendous therapist. She didn’t specialize in eating disorders, but was still able to listen to my food and body anxieties and professionally analyze my situation. She had a maternal approach to therapy and when my health severely diminished, I sought safety and solace in her office. We met only once a week and each session I came with an overload of thoughts, feelings, and worries. Unfortunately, we had to end our therapist/patient relationship when I moved to Santa Cruz for college. She let me go with care but worry and I, too, left in complete apprehension.

Once I was in college, Dad researched therapists in the area who specialized in eating disorders. He found one in downtown Santa Cruz, and I took the bus to see her, a plain-dressing, gaunt woman who appeared to be in her mid-fifties. We never connected. I questioned her own eating behaviors, and she disapproved of my impulsive tendencies. In her office I felt criticized, not safe, so that I began to keep to myself. She sat in her chair, staring at me with this look as if urging me to talk more. But she never asked me leading questions nor could she carry a topic for very long. I began blowing her off and ignoring her phone calls, then I’d go back, and then skip appointments again. My parents made me stay with her, even after I tried telling them how she was in no way helping me get better.

Finally, I wrote her a letter saying I wasn’t coming back, that we weren’t a good fit.

I took a break from therapists for a while. My parents, especially Dad, constantly urged me to find someone else, thinking it would help with my bulimia and just to have someone to talk to in general. But I resisted. I didn’t see the point of spending money for therapy because I knew I wasn’t really ready to change. I became so incredibly reliant on my bulimia that I felt somewhat threatened by professional help. What would happen if they took my disease away? In truth, I had stopped seeing it as a disease and more of a lifestyle. If I didn’t binge and purge every day, I felt anxious and unsettled.

But after I had to move to a new house for the third time in a year I gave in to Dad’s suggestion and contacted a local therapist said to specialize in the treatment of eating disorders. I went to see her and immediately I felt her practice style to be a little overly holistic for my taste. She favored herbal remedies, DBT, and questions like, “Find where your feelings come from in your body. Is it your heart? Your stomach? Your head?” I honestly had no discernable feelings location, so I made stuff up.

I did learn a few things from this therapist, but in her office it was as if she was leading a slow-paced, spiritual yoga class while I was blasting cardio pumps in the corner. No connection.

I didn’t see her again for several years, until my relapse in the spring of my senior year of college. By that time it was probably too late for any medical professional to pull me out. I was hardly sleeping, eating very little, and exercising way too much. Dad suggested I contact the most recent therapist, and I was scared enough to try, but by our second appointment I had already fallen too ill to comprehend her holistic approaches. My weight got down too low and my insomnia made it nearly impossible to connect. After Mom came along to a session, she withdrew me from her care.

At the ED treatment center in Arizona, every girl had an assigned therapist, out of a whopping two. I hated mine. She approached therapy as if disciplining an animal. I didn’t feel that she saw me as a human being with my own feelings and needs. Rather, I had to adhere to her rules and guidelines and recovery approaches. I understood that she had herself recovered from bulimia nervosa after suffering a heart attack, but it didn’t make her more approachable.

Then in the hospital, the medication coupled with my eating disorder led me to believe I would never be normal again or feel at all like my old happy-go-lucky self. I had forgotten how to take care of myself, although looking back I blame this on the medication. I shook when I walked, became unsure of how to feed or dress myself, and feared I had sealed my fate as an invalid for the rest of my life. I couldn’t trust the doctors and nurses or my family, who had okayed the prescriptions. No one wanted to take care of me or let me come home. I had been left completely alone, I realized, and I truly thought I would die in the hospital. But I found hope. My parents managed to make a very smart decision on the advice of their friend, a psychoanalyst. They found me a new and highly recommended psychologist for when I got out of the hospital.

 

sheila:
When you’re the desperate parent, you might expect and even welcome the sure-footed professional—until the treatment clearly isn’t working and all that’s prescribed is more of the same. Sometimes it looked to us like the experts were juggling medications and treatments and just hoping something would catch.

Eating disorders often involve more than one diagnosis, for the patient and possibly for the family. The “comorbid” condition in our family being depression, Lisa was diagnosed with depression and anorexia. I picked up a hint of pride when Lisa spoke of having a dual diagnosis, as if that was more impressive than just being, say, bipolar. Whatever the combination, ED patients and parents deal with mind-bending complexity at a time when everyone most wants one bulletproof answer. In less than a year, Lisa’s possible diagnoses spanned the
Diagnostic and Statistical Manual of Mental Disorders
, the standard used by U.S. mental health professionals. Experts mentioned obsessive-compulsive disorder (OCD), bipolar disorder, major depressive disorder, and generalized anxiety disorder in addition to plain-old anorexia, bulimia, and anorexia nervosa, binge-purge type. And then, psychiatrists mentioned schizophrenia, with Lisa present, as a possibility that couldn’t be ruled out for several years.

In our experience with Lisa’s illness, if the professionals had doubts, they weren’t divulging them to us. Once they had a theory, made a diagnosis, or read a colleague’s report, that was that. New information was only going to cement their opinion.

Asking about taking other tacks, we were told:

“No. We don’t do that here.”

“No. We haven’t given this treatment plan a chance.”

“No. Studies show that this works.”

As a journalist, I know that studies can show anything, even when dressed up in evidence-based data. Results of medical trials, particularly, can be skewed by a high dropout rate. Even if the study being cited is totally credible—with a large enough and representative sample, a control group, accurate reporting, and no strings attached to the funding—do the results apply to your child? An overworked clinician may not necessarily know. And yet, to calm you down or appear in control, he trots out his Ivy League training and doesn’t turn back. We were only too eager to buy it. When confronted with this attitude during Lisa’s stay at Stanford Hospital, we thought, stupidly, “Well, yeah, this is
Stanford
, for heaven’s sake. They must know what they’re doing!”

There are gifted experts in the field of eating disorders, without question. Still a patient’s progress is glacially slow because of the nature of the disease. Patients don’t want to change their eating habits, gain weight, or lose attention and emotional support. Even if the patient agrees to try medications, the initial dose is usually low and takes a while to work, if it’s going to work. Meanwhile the drugs have debilitating side effects. You must wait for your child to reach the therapeutic dose. And that’s only if medication is even a possibility. With severe anorexia, the patient first needs to gain weight. With severe bulimia, pills may not stay in the body long enough to do anything. Ned and I were told to hold on and be patient when it made sense but also when it should have been time to fold our cards, shuffle, and deal again. Too often, we clung to every turn of medical phraseology, as if we could squeeze the right answer from analyzing each word and comma. When Ned and I talked about what the doctor said, we had to wonder whether he or she was telling us something just to make us feel better. Later I learned a helpful way to think about listening to oral reports. Anthropologists doing fieldwork have a different way of listening to their subjects’ words, and it applies equally well when listening to experts: “It is true that he said that. But what he said may not be true.”

It is also true that no patient or parent wants a wishy-washy doctor. With any disease, we would want them to be clear, hopeful, and open to new information.

Until being forced down the rabbit hole of eating disorders, I had the usual strongly held opinions. These diseases were somehow the parents’ fault, and anyone who wanted to could just decide to get better. Why in the world would anyone get started on an eating disorder like anorexia? It made no sense to me. When I’m hungry, I eat. Food is health, love, community, and fun. Back then I didn’t see the irony in my opinion. I used to be the One Who Didn’t Eat, and then became a no-fun vegetarian, and now I can’t see why anyone would go that route? Ahem.

Four experts helped me reframe the question as: Why do some people get eating disorders and not others? In a thin-worshipping, food-obsessed culture, where we like to think that with willpower we can control most aspects of our lives, it’s a wonder everyone doesn’t have an eating disorder. I was lucky enough to encounter these four experts—a psychologist, a college adviser, a dietician, and a high school English teacher—while navigating the thicket of ever-changing information. A former Olympic athlete also pitched in. Each of them cleared up an issue or two for me, Ned, and Lisa. They helped us recognize the surprising expert who finally got through to Lisa.

sheila:
Louise Stirpe-Gill was one of the most clear-sighted people we met on this journey, perhaps because she’d been immersed in the field of eating disorders and had taken a step away. Lisa and I met her when we gave a talk about eating disorders at our synagogue. Stirpe-Gill had specialized in ED for many years. She still sees some binge eaters, bulimics, and anorexics, but she found it more therapeutic to widen her practice—for herself as well as her patients. It’s very hard on a physician to treat so many people that close to death. At first, she saw mostly female college students. Then they were high schoolers. In the mid-nineties, Stirpe-Gill started getting male patients with eating disorders. That hasn’t let up, although men are still more vulnerable to feeling shame about mental illness and therapy, and more likely to stay away until a physical ailment requires action.