By Sarah Ravin, Ph.D., Clinical Psychologist and VIP Guest Blogger
As a psychologist, a writer, and a mental health advocate, it is both a unique privilege and an incredible opportunity for me to write for LEAD’s blog. I wholeheartedly support LEAD’s mission to empower, educate, and advocate, not only for individuals with mental illnesses but for their families as well. For far too long, parents of children and adolescents with mental illnesses were blamed, marginalized, stigmatized, and isolated. Ultimately, children and teens suffered even more, when they were isolated from their families and deprived of their parents’ support during their most vulnerable times. This phenomenon was particularly pronounced in the treatment of adolescent eating disorders. By sharing the story of an adolescent girl who recovered from Anorexia Nervosa with the support of her family, and by describing the treatment approach that has enabled her and many others like her to thrive, I hope to educate, empower, and advocate for other teens and families who are facing an eating disorder diagnosis.
A Glimpse Into Treatment
“Mom, I hate you. Dad, I hate you. And no offense, Dr. Ravin, but I hate you, too.” Stacey glared at me with pursed lips and a vile look in her eyes.
“None taken,” I replied calmly to the emaciated and hostile 13-year-old girl sitting across from me in my office. “Stacey,” her mother whispered in admonishment, as her father shifted uncomfortably in his seat. “Please be respectful.”
Stacey had been diagnosed with Anorexia Nervosa (AN) six months before this exchange. She and her parents were attending their third session of Family-Based Treatment (FBT)
with me. When Stacey was first diagnosed, she began traditional treatment for AN, which entailed meeting with an individual therapist, whom she did not speak with, and a dietitian, whose meal plan she did not follow. Weeks passed, then months, with no improvement in her symptoms. Stacey’s menstrual periods stopped, her weight continued to plummet, and her food intake consisted of little more than salad and apples. Stacey’s concerned parents were advised to “stay out of it” and were reassured that the professionals would handle this. “Don’t be the food police,” the therapist and dietitian advised. “You’ll only make it worse.”
For decades, the treatment of Anorexia Nervosa was guided by myths and assumptions such as:
- Dysfunctional family dynamics are the cause of anorexia nervosa
- We can’t help her until she wants to get better
- Therapy has to address the “root cause” of the illness before she starts eating
More recently, these myths have been disproven. It’s no surprise, then, that older methods of treatment based around these myths were not very useful. A generation ago, many people who developed anorexia nervosa as teenagers suffered from the illness for years or even decades, and up to 20% of patients died as a direct result of the disease.
An Evidence-Based Approach
Fortunately, this is no longer the case. Thanks to more recent scientific research, we now know that there is no particular “family dynamic” or type of parenting that causes anorexia nervosa. Families with an anorexic child often present for treatment with high levels of stress, anxiety, anger, and conflict, but we now know that these family dynamics are the expected results of coping with a loved one with a life-threatening mental illness. We understand that the risk of developing AN – similar to the chances of developing schizophrenia or bipolar disorder – is mostly genetic.
Recent advances in brain imaging technology have allowed neuroscientists to observe that individuals with AN have an imbalance between ventral brain circuits (those involved with reward and emotion) and dorsal brain circuits (those involved with planning and anticipating consequences), as well as an alteration in the insula, a brain area implicated in self-awareness and self-perception. Research has shown that certain temperamental traits – behavioral inhibition, perfectionism, anxiety, harm avoidance, obsessiveness, and rigidity – are starting in early childhood in the majority of individuals who develop AN. Puberty is a catalyst for the onset of AN in many cases – dramatic hormonal shifts cause alterations in brain chemistry as well as significant changes in body size, shape, and constitution. For example, an average-sized healthy girl gains approximately 40 pounds between the ages of 11 and 14, and her body fat percentage doubles or even triples. Our thinness-obsessed society’s general disdain for weight gain, pervasive diet advertisements, admonishments to “eat this, not that,” vilification of carbohydrates and processed foods, and BMI “report cards” in public schools, create a toxic environment for pubescent girls. Our culture pathologizes the very normal, healthy, and necessary adolescent developmental process of gaining weight and body fat. Add to that the overuse of social media along with increasing academic, extra-curricular, and social pressures, and you have a recipe for AN to flourish in genetically-vulnerable young people. Perhaps it should come as no surprise, then, that a growing number of 9, 10, and 11-year old children are presenting for treatment with full-blown cases of AN.
We now have a much clearer understanding of the biological and psychological underpinnings of anorexia nervosa, which has allowed us to develop more effective treatments. We know that the inability to recognize the problem, and the desire to remain sick, are brain-based symptoms of the illness, which usually disappear as a person recovers. Perhaps most importantly, we now know that the cognitive and emotional symptoms of AN, such as body dysmorphia, preoccupation with food and weight, and depressed mood, are triggered and perpetuated by insufficient nutritional intake and maintenance of sub-optimal body weight. Therefore, nutritional restoration and weight gain must happen as soon as possible, whether the teenager likes it or not, to give her the best possible chance of a full and lasting recovery.
The longer an eating disorder persists, the more entrenched it becomes, and the more damage is caused to the young person’s body and brain. Although most of this damage can be reversed with early diagnosis and aggressive treatment, chronic forms of AN can result in irreversible medical and psychiatric complications and even death.
While Stacey was going through individual therapy, her obedient parents followed the professionals’ advice, allowing Stacey to slice up half an apple as her breakfast, waiting patiently in the car or waiting room as Stacey met with her therapist and dietitian behind closed doors. They grew more and more worried as their young daughter’s body failed and, in a shining example of backwards logic, were accused of causing their daughter’s illness by being too anxious and overbearing.
After a few months with no improvement, however, they’d had enough of standing helplessly on the sidelines. Desperate to help their daughter, Stacey’s terrified parents scoured the internet late at night, searching for solutions. They stumbled upon a non-profit organization called FEAST: Families Empowered and Supporting Treatment for Eating Disorders. Through their online connections with other parents of eating disordered children, Stacey’s parents learned about a new approach to treating AN, which actively involves and empowers parents to help their children recover.
The Origins of FBT
Family-Based Treatment (FBT), also known as the Maudsley Approach, was developed at the Maudsley Hospital in London and brought to the United States around 2000. FBT is based on a set of principles that are, in many ways, as opposed to the myths that guided older treatment approaches. FBT is grounded in the following principles:
- The cause of AN is unknown, but parents are not to blame for causing the illness, nor is the child responsible for choosing it.
- Parents are the experts on their children, and parents have unique strengths and resources to help their child recover.
- Full nutrition is the essential first step in recovery from anorexia nervosa.
- Parents can – and must – require their malnourished child to eat the types and amounts of food that he or she needs to restore health.
In FBT, parents are the leaders of their child’s treatment team, and a therapist works as a consultant to them. With the support and guidance of a clinician who specializes in eating disorders, parents are coached in how to create a home environment that is conducive to recovery.
Parents Supporting Recovery
Through their FBT sessions with me, Stacey’s parents learned that AN is a potent force that hijacks a young person’s mind, distorting her perception of her own body and compelling her to restrict her food intake, exercise excessively, and relentlessly pursue weight loss, without being able to comprehend the severity of her situation. Stacey, like most teens with AN, thought that she was just fine and that the adults around her were over-reacting. It was not that Stacey WOULDN’T eat more, stop running, or gain weight. It was that she COULDN’T. Moreover, the perceptual distortions and neurological impairment caused by AN impaired Stacey’s ability to recognize that she was ill, so she saw no need for help in the first place.
Stacey’s parents were charged with the task of curtailing her morning running routine, preparing and supervising her meals, ensuring that she was consuming an adequate quantity and variety of food to begin gaining weight and restoring her health. To say that Stacey was livid would be an understatement.
She ran out of my office, screaming and crying at the top of her lungs. She hurled obscenities at her parents at every meal. She called my office and left me nasty voicemail messages about how I was ruining her life. But she ate.
She ate everything her parents put in front of her. She ate because her parents and I sent her clear and unequivocal messages: you have a life-threatening illness, food is your medicine, full nutrition is not optional, and you are not healthy enough to make your own decisions about food at this time. The alternative to eating at home was admission to a hospital program, but either way, full nutrition was required from this moment on.
So Stacey ate. She raged, cried, and protested, but she ate. In the first week of FBT, she gained 2 pounds. In the second week, she gained 3 pounds. As her steady weight gain continued, her heart rate and blood pressure returned to normal, color returned to her cheeks, a spring returned to her step, and a smile occasionally appeared on her face. By the second month of FBT, her anger began to subside a bit. She gradually became less hostile, less defensive, more insightful, and more willing to engage in conversation. In the third month of FBT, little by little, as her brain emerged from a malnourished haze, she learned more about AN, accepted that she had this illness, and begrudgingly welcomed the support of her parents and me in overcoming it. She tackled her food fears, returned to a healthy weight and maintained it on her own, developed the ability to nourish herself healthfully once again, and learned to manage the triggers and anxieties that naturally arose in her daily life without allowing them to derail her recovery. Her periods returned, her energy increased, and she was once again able to enjoy physical activity for its own sake, rather than as a mere calorie-burning tool. She collaborated with her parents and me to create a written relapse prevention plan designed to help her maintain her remission. Within a year, she was fully recovered from anorexia nervosa – both mentally and physically – and she was deeply grateful to her parents for finding and pursuing FBT for her.
The Landscape of Eating Disorder Treatment
Stacey’s family was the first family I saw for FBT when I opened my private psychology practice back in 2009. With no FBT practitioners in their local area, Stacey and her parents gladly commuted an hour and a half each way to my office. In the past decade, FBT has been researched more extensively and discussed more frequently at professional and academic conferences. FBT has become somewhat more widely available throughout the USA and is now considered by the American Psychiatric Association, The American Academy of Pediatrics, and the Society for Adolescent Medicine to be the preferred first-line intervention for adolescents with AN.
Fortunately, the internet has allowed people all over the world to access information about treatment for anorexia nervosa with the click of a button. It is becoming increasingly common for concerned parents to do extensive research on anorexia nervosa and decide for themselves on a treatment approach that best suits their teenager and their family. Some fortunate families are referred to FBT as soon as their child is diagnosed. Other families, like Stacey’s, find FBT through their desperate searches after different treatment approaches have failed. And yet, I still receive numerous urgent phone calls and emails every week from parents all over my state who are desperate for FBT, unable to find FBT practitioners in their local areas, and willing to commute for hours to access effective treatment for their precious children, many of whom have remained ill for years while undergoing more traditional treatments. This should not be the case.
I envision a future in which all parents are empowered to participate actively in their child’s treatment, starting the day of diagnosis, from therapy sessions to doctor’s visits to food preparation and meal support. I imagine a future in which FBT is widely available in all communities and is recommended not just by national organizations, but by every individual physician and therapist, as a first-line intervention for adolescent eating disorders. I hope to help create a future in which parents are viewed as the leaders of their child’s treatment team, in which true collaboration between families and clinicians is universally expected as a standard part of eating disorder care.
Stacey has sustained her recovery from AN over the past decade. At 18, she went away to study at a prestigious university in the northeast. Now 23, she lives independently and works as an individual education teacher in an inner-city school. She credits FBT for saving her life and has recommended this treatment approach to several of her friends who have battled eating disorders.
School teachers and administrators can play an influential role in the fight against eating disorders by providing accurate, useful, up-to-date education about eating disorders and other mental illnesses, by helping to identify students who are most at risk for developing eating disorders, and by intervening on behalf of students who have eating disorders by collaborating with their parents and referring them for specialized professional treatment right away. Schools can also work with parents and healthcare professionals to support students with eating disorders by implementing treatment plans within the school setting. For example, schools may make accommodations for a child with AN to have supervised lunches, or to be excused from PE while underweight or medically unstable, or to be exempt from a particular lesson plan that contains triggering information.
Why wait? #LEADnow
In response to the rising rates of mental illness, Let’s Empower, Advocate, and Do, Inc.(LEAD) provides curriculum and training to schools, summer camps, and youth-serving organizations to promote mental health education and adolescent wellbeing.
LEAD “revolutionizes health education” by introducing topics like mental illness, substance use, and sexual violence into existing – and often outdated – health education courses in high schools. LEAD’s TryHealth curriculum supplement is currently being piloted at four high schools in two states. It has already shown promising results, including students being 2x more likely to report suicidal ideation in a peer after taking the course.
LEAD also provides innovative and evidence-based early intervention training and certification to adults working with young people and in high-risk communities. For more information or to request a free consultation, please visit www.leadnow.org or contact LEAD’s Executive Director at kyrah@LEADnow.org.
About the Author
Dr. Sarah Ravin received her B.A. in psychology from Smith College and her Ph.D. in clinical psychology from American University. As a licensed psychologist in private practice near Miami, FL, she provides evidence-based treatments for children, adolescents, and young adults and consultations to parents who are supporting their children’s recovery. She specializes in Family-Based Treatment (FBT) and Cognitive-Behavioral Therapy (CBT) for eating disorders, anxiety, depression, and related mental health issues. Dr. Ravin writes an award-winning blog on eating disorders and associated topics in mental health and works as a professional advisor for the non-profit organization FEAST: Families Empowered and Supporting Treatment for Eating Disorders. Contact Dr. Ravin at email@example.com or visit her website at www.drsarahravin.com for more information.