With so few local options for treating eating disorders, a University of Louisville scientist is determined to help patients recover.
It’s not uncommon in the eating-disorder community to hear the nickname “Ed.” A therapist might ask a patient stuck in anguish over diet and weight: Is that Ed talking? It’s a way to separate the disease from its host, because anyone who has experienced one or treated one knows the longer Ed hangs around, the more secure it becomes. Ed is an obsessive puppeteer, and its agenda is weight control, with constant whispers and roars of what’s safe to eat, what not to eat, how to rid what’s been swallowed. It swirls like a whirlpool, dragging lower and lower, first into malnourishment, then organ damage, then, maybe, death.
Eating disorders have the highest mortality rate of any psychiatric disorder. Some studies report that in westernized countries, a person dies every hour due to an eating disorder. About 30 million Americans of all genders and races struggle with eating disorders at some point in their lives. Only a third ever receive treatment. Who wants to reveal that eating — as instinctual as breathing and sleeping — is so crippling? And so the illness festers and grows in secret, eventually eclipsing a person’s whole being. Food is the enemy. The body, the battlefield. It is with that scaffolding that life is lived, day and night, for months or years on end.
Nothing easily falls back into place. A severely underweight adult with anorexia typically does not respond to therapy alone and needs a team of support, like a dedicated dietician, a psychologist and a psychiatrist who might prescribe medicine. And research shows that treatments often used for bulimia only lead to a full recovery about half the time. Eating disorders are so challenging to treat that many mental-health professionals choose not to accept those patients. A team of Harvard psychologists followed a group of people for 20 years after an initial diagnosis and two-thirds had recovered. So healing is possible. It’s just not simple.
Eating disorders are not well-understood, and funding to study them has lagged for years. In 2017, the National Institutes of Health dedicated $430 million to research depression, $268 million for schizophrenia and $95 million for bipolar disorder. Funding to study eating disorders totaled $30 million.
The landscape for treatment in Louisville and all of Kentucky is especially bleak. “I would call it a drought,” says Alex Pruitt, a local pediatric psychologist who treats children and teens with eating disorders. When eating disorders have become severe, local hospitals can stabilize a patient who’s dehydrated, underweight and presenting a heart rate that has dipped dangerously low. But what next? There are no residential treatment facilities in Kentucky. Those that do exist out of state can cost as much as $30,000 per month and insurance rarely covers the cost. The next best type of program would be a partial hospitalization program, one in which the patient receives six to 12 hours of treatment every day. None of those exist in Kentucky either.
One local mother remembers that several years ago, when her 13-year-old was at what was then called Kosair Children’s Hospital, a doctor informed her that her daughter would need a higher level of care for her anorexia. “Who do you recommend?” the mother asked. She remembers the doctor saying, “I’m not really sure.” She didn’t understand. Surely there was someone he could point her to. She repeated the question. The doctor had no answer. “We were dumbfounded,” the mother says. Later, someone handed her a brochure for Remuda Ranch, a facility in Arizona. “That’s the only information we have in the office,” the mother was told. So she and her husband flew to Arizona with their young teenage daughter and “had just five minutes to say goodbye,” she recalls. “It was horrible. We cried all the way back to the airport.”
The four eating disorders are Anorexia nervosa, Bulimia nervosa (obsession with weight, bingeing and purging or excessive exercise), binge-eating disorder and other specified and feeding disorders, or OSFED, a disease that includes symptoms like severe restriction of certain foods and purging without bingeing. Anywhere from 1 to 3 percent of the population struggles with these disorders. (Binge-eating disorder results in a different set of medical complications than the other three — for instance, high cholesterol and diabetes. It’s often not as easily recognized as individuals may appear like the rest of society — at a healthy weight or overweight.)
While a violent trauma might lead to PTSD, there’s no direct cause and effect with eating disorders. A desire to run faster, dance lighter, fit into smaller sizes or stand out as the perfect child amidst a chaotic home life — those all may act as catalysts to start compulsively losing weight. But how does one slip from dieting to eating disorder? Research shows that genetics can play a role. Someone who is genetically predisposed to anorexia but never diets will likely not develop an eating disorder. But people who have the genetic piece and add the diet piece may set themselves up for the illness.
The environment we live in doesn’t help. Social media is a flood of sculpted abs, protruding hipbones, stunning selfies and before-and-afters, angles and filters guaranteeing perfection. A well-known study published in 2002 in the British Journal of Psychiatry looked at the impact of television on adolescent girls in Fiji. Up until the mid-1990s, the area of Fiji where the study took place had never had television. Culture discouraged reshaping the body through diet and exercise. Scientists checked in with a group of teen girls three years after television had been introduced. Girls with a TV in the home were three times as likely to have dissatisfaction with their bodies. They also had a newfound desire to diet. A quote from a participant: “Since the characters on Beverly Hills 90210 are slim-built, my friends come and tell me that they would also like to look like that . . . I have to work on myself, exercising, and my eating habits should change.”
Some research indicates that 90 percent of women in America have negative body-image issues. “Women are bred to know what not to eat and to save calories for later,” says Pruitt, the pediatric psychologist. She remembers a father of a patient once saying, “Don’t all girls make themselves throw up at some point in their lives?”
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| Photo: Since returning to Louisville in 2016, Cheri Levinson has advocated for more effective eating-disorder treatment. // by Mickie Winters |
Louisville’s eating-disorder community is small. Only three dieticians here treat eating-disorder patients. Only a handful of therapists and psychologists specialize in eating-disorder treatment. They often have wait lists and don’t bother with insurance because the reimbursement rate is so low it’s not worth the hassle. (Sliding-scale fees are typically offered.) A few therapists in town report success with patients through self-esteem building, dietary guidance and counseling that addresses the thoughts, emotions and behaviors that propel disordered eating.
But relapse is incredibly common. Since it is mostly females who battle eating disorders, girls and women from Louisville often spot familiar faces in local waiting rooms and at residential treatment centers in St. Louis, Nashville and Arizona. A common misperception about eating disorders: They are diseases for rich white girls. Of the 30 million Americans with eating disorders, an estimated 10 million are men. Experts stress that while research has shown the disease is most prevalent in American and European countries, it’s likely underreported and on the rise in minority populations and countries that are becoming more westernized.
The topic of relapse frustrates Cheri Levinson, a licensed psychologist and University of Louisville professor and researcher. Her voice deepens a bit, her eyes narrow. The friendly, sociable 33-year-old flips into a serious, look-at-the-data scientist. One afternoon, she sits in her office at U of L explaining family-based therapy, a form of treatment for adolescents with eating disorders. With the guidance of a therapist, parents take charge of feeding their children as if they were toddlers again. Parents sit and eat with them, even at school if possible, all the while educating them as to the dangers of starvation and encouraging progress. Levinson repeats how the data show it works if all steps are followed to their completion. She adds that anyone treating adolescents and not using family-based therapy were “in my mind, unethical.”
In the last two years, Levinson has risen as a leader in the eating-disorder community. She is an advocate for evidence-based treatments, as opposed to feel-good, let’s-sit-and-talk therapy. (Nearly every medical professional contacted for this story suggested Levinson as the person to talk to.) A Louisville native, she returned to her hometown in 2016 after studying at some of the best eating-disorder research facilities in the country, including the University of North Carolina Center of Excellence in Eating Disorders. Her decision to move near family was partially due to the birth of her daughter. But she also says she “wanted to help.”
She remembers close friends in high school who had eating disorders and couldn’t find effective treatment. Years later, during her post-doctoral work at Washington University in St. Louis, she spent time at McCallum Place, an acclaimed eating-disorder treatment center. (Many patients from Louisville and Lexington end up getting referred there.) “I saw all these women who were my age stuck in this building for months doing treatment for their eating disorders when they could’ve been living their lives,” Levinson says. “And they were stuck and so sick and I was like, ‘This is it. This is what I’m doing with my life.’”
In October Levinson opened the Louisville Center for Eating Disorders in Middletown. Housed in a cluster of two-story brick buildings, the clinic shares space and staff with a clinic that primarily treats obsessive-compulsive disorder. The Louisville Center for Eating Disorders offers an intensive outpatient program. Five days a week for several hours a day, patients come for therapy, meetings with a dietician and even “meal support,” essentially eating alongside a psychologist or therapist who can help address the whispers and roars, the voices pushing a patient to immediately vomit or go for a long run after eating.
Colleen has been going to Levinson’s clinic for about a month. She has struggled with eating disorders for seven years. (She, along with other women in this story, asked that her last name be withheld.) The quiet 23-year-old with freckles and a dry sense of humor has been in and out of residential treatments all over the country. She says that before the Louisville Center for Eating Disorders, coming home typically reversed any improvement made. “You have so much structure in treatment,” she says, explaining that meals are supervised and weight is often checked. “When you come home and just see a therapist and a dietician once a week, it’s just a lot. I would go back to having my job and I always ended up going back to (the eating disorder).” Having recently completed a stay at a residential treatment facility, she enrolled in the intensive outpatient program as a way to “step down” from round-the-clock treatment. “It’s nice that we finally have something for real,” she says.
In residential treatment settings, patients might successfully stop purging or restricting food, but that’s just the start. If released without any follow-up care, old habits creep back. “Fifty percent of people who leave intensive treatment relapse,” Levinson says. “It’s really complex, but we know that there are physical and psychological problems with an eating disorder. Once the physical problems have been resolved, then the psychological problems can be addressed.”
The most critical time period, Levinson says, is when a patient leaves an intensive program. They’re nourished. Their brain can make rational choices. That’s the time to pounce on the emotions and thoughts and actions that feed the illness. “There’s a relationship between thoughts and eating-disorder behavior. It’s self-reinforcing,” she explains. “That cycle of thought leads to long-term sickness.”
Like most people with eating disorders, Colleen’s illness doesn’t exist in isolation. She battles social anxiety and depression. Up to 75 percent of individuals with eating disorders also have an anxiety disorder. Much of Levinson’s research seeks to untangle the mystery of eating disorders. “One, I want to know what maintains an eating disorder, so how does anxiety maintain an eating disorder,” she explains. “Two, I want to know how we can develop novel treatments. Three, I want to figure out how to personalize treatment. Because everyone is so different. What specifically maintains an eating disorder is different for everyone.”
At Levinson’s clinic, sometimes eating disorders get dubbed “food OCD.” That approach has her and her team leaning on therapies that have not traditionally been used with eating-disorder patients. Exposure therapy challenges clients to sit with and eat foods they’d usually avoid or purge, like sweets or chips. (Exposure therapy is often used with OCD clients who might have a fear of germs. Therapists expose patients to germy settings and encourage them to avoid excessive hand washing, ultimately, in theory, showing the client their worst fears of dire illness will not come true.) “We have to push them to do things they don’t want to do,” she explains. “That helps them get better.”
Colleen flatly says of exposure therapy: “It sucks at the time,” especially because, like many with eating disorders, she doesn’t like eating in front of other people. “But I know it will help long term,” she says. The hope is that if clients can eat a forbidden food and not go to their “safety behaviors,” like purging, then, slowly, they can re-learn eating — the necessity of it; maybe, even, the joy of it.
It’s not easy work. Michelle Eckhart, the registered dietician at Levinson’s clinic, says she recently met with a patient in her 40s, a woman “immersed in her eating disorder,” she says. When Eckhart challenged her with a Bagel Thin and cream cheese for breakfast, rather than the string cheese and low-fat yogurt that for years had maintained the weight she deemed acceptable, the woman sobbed, her body shaking. It’s a bit of a dance, Eckhart says — urging patients to try new foods but not overwhelming them. Pruitt, the pediatric psychologist, says, “You’re asking a person to do something they’re terrified to do.” And as part of the intensive outpatient program they must do it six times a day — three meals and three snacks. Pruitt recently started working at the Louisville Center for Eating Disorders and says she usually tells parents that recovering from an eating disorder can take months or longer. “In the two years that I have had a practice (in Louisville), I have had three cases (out of about 20) that really have gotten to a fully recovered state,” she says. “And it took about two years to do that.”
The outpatient program, of course, costs. And insurance resists paying for it. Levinson recently hired someone whose sole job is to battle with insurance companies over the phone. Usually one day of intensive outpatient treatment costs between $300 and $425. Levinson’s had some luck with insurance repaying a portion of the cost under a “single-case agreement.” But they may not continue past the agreed-upon time frame — say, one month.
One day Levinson is especially agitated that insurance cut off a patient because the insurer didn’t think the patient had “medical necessity” for the program anymore. After all, the individual was up to a healthy weight and eating again. “The point of the intensive outpatient program for eating disorders is not to restore medical health,” Levinson says. “It’s to keep the patient out of a higher level of care and work on the actual causes of the eating disorder once they are physically healthy to do so.” She adds that while the program costs about $9,000 per month, a residential treatment facility (should the patient have a serious relapse) costs three times that.
Colleen says she’s “doing really well.” And while she had planned on tapering down from five to three days a week as part of her program, her insurance denied further coverage. She stopped the intensive treatment in mid-January.
On a recent winter morning, Levinson meets with four graduate students to review research projects. They sit in the Eating Anxiety Treatment Laboratory and Clinic (aka the EAT Lab) at U of L. It’s a tidy complex of offices in the Department of Psychology and Brain Sciences. Walls are painted a buttery yellow and a room used for therapy has a light-brown leather couch, a rocking chair and two scales. Before Levinson’s arrival in 2016, the space was used as a vision lab, the walls painted black. Before 2016, eating-disorder research was not on U of L’s radar. If the Middletown clinic is Levinson’s traditional, private facility, the EAT Lab is more research-based, the services far less expensive or free if a client is taking part in a study.
Levinson has good news to share with her students. A smirk cracks and she leans forward. “I’m now officially a member of the Eating Disorder Research Society. You have to get invited to be a member and you can only become a member if they feel you’ve made a significant contribution to the eating-disorder field,” she says. “So I’ve wanted to be a part of this, like, my whole life. OK, the last 10 years.”
Levinson has authored or co-authored 50 peer-reviewed pieces and she has presented research at dozens of conferences. (Her curriculum vitae is 19 pages long.) Right now she and her team of graduate students and undergraduates juggle several projects. One is looking at the role of perfectionism in eating disorders and another measures the effectiveness of imaginal-exposure therapy, a take on exposure therapy that relies on patients imagining their greatest fears and reliving them in the mind. Levinson is greatly excited about this form of therapy because it can be done online, breaking down barriers for patients who may live in rural areas.
A pilot study of online imaginal-exposure therapy run by the EAT Lab has shown promise. One hundred and thirty patients have completed prompts, producing an uncomfortable scenario. One participant wrote, in part: We are sitting at a wooden table, which is chilly to the touch. I feel very uncomfortable and very anxious as I look over the menu . . . I order a simple salad, and tell the waiter to not put dressing on it. I pray that he remembers that detail, because I won’t touch it if I see anything on it. Another participant wrote: My face is fat, my thighs are huge, my stomach looks like I’m pregnant . . . what if my clothes don’t fit anymore or I can’t fit in an airplane or car. Levinson’s data show that after five sessions of exposing themselves to this imagined worst-case scenario, eating anxiety and food avoidance dipped slightly.
Levinson and her students travel to conferences and share research findings with experts from around the world, borrowing and applying what they learn to patients here in Louisville. “I think the reason why people get stuck in stuff that doesn’t work is because they’re not up on the science,” Levinson says. “You need someone who’s up on the science but also making new science that is cutting-edge. It’s not a huge field and I’m a part of that field that’s developing new treatments, creating new knowledge, understanding why eating disorders exist.”
Levinson’s hope is to one day create both a partial hospitalization program and a residential treatment facility in Louisville. Dr. Andrea Krause, a pediatrician with Norton Children’s Hospital and U of L, says Levinson would do it right. “We want a facility that follows evidence-based protocols,” Krause says. “We need a residential facility that’s willing to treat the youngest ones. It’s traumatic to tell a 10-year-old that you’re going to ship them away for treatment.”
Krause usually sees anywhere from 20 to 30 kids a year who are so malnourished and weak they’ve been hospitalized. Once stabilized, and if the child’s insurance won’t cover intense treatment, she’ll refer them to U of L’s Bingham Clinic. It offers regular appointments with an experienced psychologist and accepts Medicaid. But Krause still considers it a backup for eating-disorder patients. She prefers to send them to a facility where a team of specialists can work together and come up with a treatment plan. She says Levinson’s outpatient program in Middletown has been “a huge game-changer.” One psychologist said having Levinson in town was “a relief.”
Pat Bedford, a regional representative for the National Eating Disorders Association, appreciates that Levinson’s mentoring a little army at U of L. Grad and undergrad students are studying the disease, testing new therapies and even disseminating body-positive programming to U of L’s campus and to local middle and high schools. “Hopefully some of (these students) will remain in Louisville and increase the number of quality eating-disorder professionals here,” she says.
Molly showed up to an ER several years ago, having vomited to the point of throwing up blood. Parents at her side, she found the ER doctor’s empathy minimal. “She did this to herself,” is what Molly remembers him saying. Levinson groans at such stories. She says there’s a great lack of knowledge. She tries to give a talk every month to local providers and on school campuses. On a recent frosty Wednesday night, she orders a beer, cues up her PowerPoint and takes part in Against the Grain’s “Beer with a Scientist” event. She’s pushing Kentucky legislators to dedicate a week as Eating Disorder Awareness Week and helping to advocate for better eating-disorder screenings in primary-care offices.
Many in the eating-disorder community want to dispel the persistent idea that eating disorders are a choice. If Molly could stop, she would. She’s working toward a Ph.D. in social work. “I should know better,” she says with a nervous laugh, sharing that even though she has gotten better, she still can’t visit the grocery store without panicking. The 30-year-old with a dimpled grin and gentle nature has been battling anorexia and purging for about eight years. (Molly is a pseudonym.)
She went to a residential treatment facility in Indiana and improved. Back in Louisville, she struggled to find support, trying out “at least 10 therapists,” she says. “I could talk to them but it didn’t seem like they had (eating-disorder) experience.” At one point, Molly was driving five days a week to Cincinnati to take part in an intensive outpatient program, cramming her classes in on the other two days. Her schoolwork suffered. It was exhausting. She dropped out.
She says she needs a therapist and dietician willing to go to the grocery store with her and sit with her at meals. Breakfast has always been a hard meal. But after sitting in her dietician’s office and eating it two times without purging, she was able to wake up the next day and think: I did it yesterday. I can do it on my own. She needs “strategies,” she says. A dietician once suggested temporarily confiscating her running shoes so she wouldn’t run off calories after eating.
Molly’s experience echoes so many others in Louisville. When her symptoms first got severe as a young grad student, her insurance denied coverage for a residential treatment facility. So she wound up at the Brook, a mental-health and addiction facility in Louisville with two locations. The Brook accepts eating-disorder patients but doesn’t specialize in their care. It didn’t help, Molly says. So she then got referred to the psychiatric hospital Our Lady of Peace. It too takes eating-disorder patients but does not treat that illness specifically. Due to overcrowding at the time, Molly says she wound up sharing a room with someone who was detoxing. “I was petrified,” she says. “I’ve never seen that before.” Trays of food would come. She wouldn’t touch them. No one ever said a word about it to her.
It’s hard not to look at Louisville’s lack of treatment options cynically. Four years ago, when plans for the Women’s and Children’s Division at Norton Healthcare were being developed, officials discussed creating an eating-disorder unit. But ultimately chose not to. A statement from Lynnie Meyer, who oversees the Women’s and Children’s Division, says the hospital can still stabilize a severely ill patient. Beyond that: “To further support people with eating disorders, we joined the National Eating Disorders Association, built a resource library within our Marshall Women’s Health & Education Center and developed community partnerships to help refer patients.”
Grumbles within the eating-disorder community might view Norton’s decision as financially rooted. Knowing that reimbursement rates are low and recovery can take so long, why bother with an eating-disorder unit? Levinson says it’s more nuanced than that. With so many private facilities, hospitals have a hard time competing. “If you have a 13-year-old, would you rather send them to a hospital or a facility with a fountain and beautiful wallpaper?” she asks.
Levinson hopes that, should she open a partial hospitalization program and a residential facility, she’ll be able to provide the whole package — beautiful wallpaper, comfy chairs and affordable, effective care. “People who can pay for it will pay for it,” she says. “Then, we will subsidize costs for people who can’t pay for it.” Because she oversees so many graduate students and post-doctoral students, Levinson envisions recruiting them onto her team — well-trained individuals who could provide services for less than what a psychologist with a Ph.D. would charge. It’s all still in the works. But Levinson’s determined. “We’ll see,” she says with a hopeful sigh.
One afternoon, Briana sits and unpacks her eating-disorder story year by year. It started when she was just seven, she says. Soda, that was the first thing she cut from her diet in hopes of impressing those around her with her restraint, with her healthy eating.
The more serious her symptoms, the more precise her timeline: “I was at Kosair for three weeks and got sent to Our Lady or Peace on Nov. 15, 2012. On Thanksgiving, I stopped in-taking everything. They didn’t know what to do . . . I was trying to get sent home . . . but I was there until April 29, 2013. My mom was trying to find me a place that accepted my insurance but she couldn’t find any place. So they were just holding me at Our Lady Of Peace . . . Then they found River City Clinic in Ohio that apparently took my insurance. It was OK. I was there from April 29, 2013 to July 12, 2013.”
She has cycled in and out of local therapists’ offices. One, she remembers, may not have rolled her eyes, but her words did the job: “Don’t tell me you’re one of those little girls who thinks they’re fat and they’re not.” Briana’s also still perplexed by the primary-care physician who, after she had restored weight in treatment, and knowing of her eating-disorder history, suggested maybe she was getting too heavy — time for some exercise.
The 20-year-old with dark-brown eyes and a singsong voice has had to drop out of college to focus on recovery. She vividly relives the starving, the late-night binges in her dorm room once her roommate left, the attempts to heal herself by adopting a vegan diet. “It was like, at first, I can eat this way and it will be OK,” she says. “Then it turned way too restrictive.” She’d tell people her veganism was for animal rights or dietary needs. “But it wasn’t,” she says with an exasperated laugh.
Briana’s currently taking part in the EAT Lab’s exposure therapy and receiving counseling from Levinson’s grad students at U of L’s Psychological Services Center. She also attends an eating-disorder support group run by the EAT Lab. Briana has lived in the grips of an eating disorder for more than half her life. It has controlled everything — lifting her from school, keeping her from friends that then drift away, pressing guilt and tears into solitary moments in the shower or in her bed at night. In 2015 her mother passed away, leading to a serious relapse after months of improvement. “I was scared to ask for help. I would cry in the grocery store. I’d want to get food but I couldn’t grab it,” she recalls. “I’d want to call my dad and tell him. But I had been trying to convince everybody I was fine for so long.” Suicide once crossed her mind. “I didn’t see a future,” she says.
For some, severing from an eating disorder is a scary thought, an invitation to an unknown chaos, a total unraveling of shape and order. But Briana says she’s finally past that fear. She stops her story for a moment to make one thing clear: “I’ll always choose recovery,” she says. “One-hundred percent.”
This originally appeared in the February 2018 issue of Louisville Magazine. To subscribe to Louisville Magazine, click here. To find us on newsstands, click here.
