The First Meeting with an Eating Disorder

Dr. Michael Strober, the director of the UCLA eating disorder program and a mentor of mine, wrote a seminal article (* link below). about how to approach the initial consultation with a patient with Anorexia Nervosa. I first read the article, written in carefully chosen, beautiful language, many years ago. As much as Dr. Strober was able to clearly explain the intricacies and demands of such a complex first meeting, the meaning of his words has only deepened with time.

It's a monumental challenge to alert a patient's eating disorder that the jig is up, a fencing match with the most subtle but effective of parries can set the patient on a path towards recovery, even someone seemingly unreachable. The practical effects of recovery may not be apparent for some time, but the first meeting can lay the groundwork for real change. 

I have since spent many hours wondering about the ramifications of Dr. Strober's discoveries. Although people with eating disorders are unique individuals, their illnesses are remarkably similar, and the message they need to see a path towards wellness practically identical. 

The eating disorder is so much more than the sum of its parts. It's a companion, a best friend, a lover and an all-knowing philosopher. It's a captor, abuser and torturer. It's a source of pride, an accomplishment in a sea of failure and an endless series of distorted mirrors. It's the primary basis of identity but also eclipses any true identity at all. 

It's everything one could dream of, yet it's also an illness, a common one at that, just like everyone else's eating disorder.

It's a vast emptiness. It's nothing. 

Dr. Strober states very clearly that a personal connection, one that obviates the need for the eating disorder, suddenly and completely calls into question the nothingness of this disease. The strongest eating disorders become personified, much like the personification of animals or inanimate objects in fiction.

Questioning that fallacy with an immediate and powerful personal connection can so disarm the patient that she can do little but listen in the open-minded way the illness had previously made impossible. 

What has struck me even more in the intervening years are the implications of that initial connection, the first moment of meeting an eating disorder.

It insists on the creation of a true and real relationship. It opens the door, if the treatment is to be truly helpful, to a very real and powerful connection, something both therapeutic and affirmingly existential at its core.

That powerful moment needs to be much more than a chance encounter. It insists on the need to see the special, moving and cherished characteristics of both the person and the relationship. It lays bare a vulnerability of a most profound nature. It creates a truly special bond risen from the ashes of a devastating disease, something lasting, a way to envision closeness in a world without the disorder. 

And in the wake of that intensity, pain and persistence against a wily and stubborn illness lies the foundation of a life in recovery, one that allows for the joy, pain, accomplishment and failure of an ordinary life.

That life no longer has the artificial drama and specialness of the eating disorder. It eludes the appeal of the supposed creation of a superhuman but false persona. After that devastating nightmare of an eating disorder wanes, what's left is a life that is very, very real.

The moment of meeting an eating disorder is now precious to me but fraught. Weighed down with the possibility of showing a very ill person a path towards relief, I see the import of Dr. Strober's words more clearly each day.

Eating disorders take away years of people's lives and cause endless suffering for so many patients and families. In that first meeting there is a chance to avoid years of pain.

If at all possible, I just can't pass up the opportunity to help someone escape that much suffering. 

* http://books.google.com/books?hl=en&lr=&id=3gmogQshI_MC&oi=fnd&pg=PA229&dq=Consultation+and+therapeutic+engagement+in+Severe+Anorexia+Nervosa&ots=WImTG6btD-&sig=qMblJkkRDMO69BLjiqjyoCOrM_s#v=onepage&q=Consultation%20and%20therapeutic%20engagement%20in%20Severe%20Anorexia%20Nervosa&f=false

Adolescence: a Risk Factor for Eating Disorders

Adolescence is a time of physical, mental and emotional growth. The rate of internal change is so fast that mistakes of poor judgment are inevitable. In fact, one of the last parts of the brain to mature involves planning and judgment, qualities clearly lacking for most teenagers. Combine this decision-making difficulty with the penchant for exploration and much of the risk for teenagers is perfectly clear. 

In every generation, there appears to be a new, tantalizing frontier that transforms into a universal rite of passage for adolescents. Alcohol, drugs and sex are the three most common concerns, but others have crept in like prescription pills and self-harm such as cutting. 

One of the newest adolescents crazes is the drive for thinness. With the expectation for both boys and girls to have unnaturally thin bodies, especially unnatural during the hormonal shifts of puberty, the appeal of weight loss has grown into a standard experience for teenagers. Peer pressure to restrict food, purge meals or take pills such as Adderall, laxatives or diuretics have grown almost unavoidable. Kids can find any number of weight loss guides on line as well to steer them towards these dangerous behaviors.

The thrill of seeing an effect on one's body can be exhilarating to a teenager who feels like life is an out-of-control roller coaster. The sense of pride and accomplishment, albeit one that is small and in the long run meaningless, quiets the constant feeling of confusion and replaces struggling self-worth with an immediate burst of confidence.

It's scary to reflect on just how powerful the drive for weight loss can be in adolescence and how success feels downright magical. 

As with all of the destructive behaviors for teenagers, the long-terms risks always escape their notice. Engaging in eating disordered behaviors, especially restricting food, sets off a cascade of biological and psychological responses to starvation.

No one can predict how each child will respond. No one knows if that child will just give up after a day or two, get caught in a cycle of restricting and overeating or be genetically susceptible to develop anorexia. But the increasingly common exposure to starvation for teenagers means those kids are more and more likely to find out. 

Until recently, no one would even consider these risks for a child. Eating meals through the day was a matter of course and the drive for thinness nonexistent. Accordingly, the incidence of eating disorders was very small, a rare and mysterious disease people fell into without any idea what was happening. That's not how eating disorders develop anymore. 

Adolescence has become a breeding ground for eating disorders, replete with friendships encouraging the behaviors, online groups dedicated to provide support and the social normalization of irrational food restriction. Just as drinking or using drugs at a young age can set that child up for much larger problems, food restriction increases the risk of developing an eating disorder. 

However, parents and adults are much less likely to worry about a teenager dieting than about using drugs. Those adults may themselves be restricting food or even encouraging the child to eat less. The social norms actually span generations, leaving teenagers without any idea their behavior is dangerous. The general obsession with thinness leaves children at sea to find a sane way to understand food and weight. 

With teenagers dieting and engaging in eating disordered behaviors, there needs to be a public health campaign to counter the false advertising of the food and diet industries. More specifically, children need to understand the risks of their behaviors and the expected norms that will keep them safe.

Adolescents won't necessarily follow the rules because that's the nature of the stage of life. However, exposure to the risks and norms will at least offer them some guidelines to either heed or ignore. It will allow them to know when their decisions are leading them into trouble. It will also give parents, even those struggling with food and weight, a means to teach their children a saner attitude about their bodies. 

But who understands these risks enough to spearhead the campaign? And who has enough influence to create awareness of these risks? The next post will address these larger questions. 

The Politics of Eating Disorder Treatment

Institutional health care--hospitals, rehabilitative centers, nursing homes and outpatient clinics--has undergone a transformation in the last decade from independent entities to large business. In order to have bargaining power in the marketplace with health insurance companies, institutions had to merge and garner a significant market share in their local community.

The most concerning issue with large health care business is consistent quality of care. Executives have increasingly relied on evidence-based medicine as the standard of care to show how even large institutions can provide excellent clinical treatment at all of their medical sites. 

This sea change in medical practice--large business and evidence-based medicine--has skipped mental health care which continues to exist in a world of solo practitioners and treatment centers. In fact, mental health treatment has often remained independent of the health insurance industry as well, except for the poor, the disabled and people with eating disorders.

As the spread of eating disorders breaches socioeconomic boundaries, too many patients don't get adequate care due to insurance limitations. And independent entities--clinicians or residential programs--have no purchase to bargain with health insurance companies. 

The new business model for the health care industry finally appears to be coming to the eating disorder treatment world. The Affordable Care Act provides one boon to the transformation: federal parity for mental health treatment. Any plan under the ACA must offer equal coverage for medical and psychiatric care, including treatment for eating disorders. Thus, one major bargaining chip for the insurance industry to limit care is no longer viable. 

The current trend is for well-known eating disorder programs to franchise residential and outpatient treatment centers in parts of the country with fewer resources. But eating disorder treatment remains complex and doesn't have evidence-based guidelines that are widely accepted. Finding any effective treatment is hard enough.

Instead, franchises attempt to replicate treatment through modeling and mentoring. Programs design step-by-step guidebooks to establish a new program while the program director or experienced clinicians train the employees at the new center. Sometimes, the director of the new center may actually move from the original center to start the new franchise. 

Eating disorder treatment remains long and hard without new scientific breakthroughs on the horizon. Expensive care for the chronically ill weighs heavily on the bottom line for health insurance companies so limiting care remains a cornerstone for minimizing financial outlay. This current system creates an underclass of people with chronic eating disorders and no way to find a path to recovery. A passionate group of directors of nationwide treatment centers can lobby government and insurance companies to offer adequate care for this languishing population. 

I see how noble this mission truly is. The rise in the incidence of eating disorders in recent decades, as I have chronicled extensively in this blog, is due to a combination of pressure for thinness, sedentary lifestyle, the rise of processed food and sanctioned starvation as a weight loss technique. But society has struggled to take responsibility for our self-inflicted epidemic.

Those unfortunate enough to have become ill labor for recovery in secret while everyone else marvels at what appears to be an incomprehensible illness. Making the suffering of these people public will hopefully force government and the health insurance industry to create fair and adequate treatment available to patients with eating disorders.

The parity for mental health care in the ACA and the increased potency of a centralized eating disorder treatment industry might just pack enough punch to make an impact. 

The Deep End of Eating Disorder Recovery

Many patients have described to me the time they stepped into recovery from an eating disorder as jumping into the deep end of the pool. The sudden moment of panic. The desperation of the urgency of life and death. The gasping for air and the frantic flailing. It's an image which helps others understand what recovery truly feels like. 

Those first few seconds in the pool are excruciating but in recovery the time last for weeks or even months. It's an extremely long time to tolerate the panicky feelings, but for those who can, the result is truly getting well. Their minds and bodies adapt to the food and feelings just as the panicked swimmer learns the comfort of treading water. The recovered person starts to structure the day from meal to snack to meal to snack, adjusting to the waves of hunger and fullness just as the swimmer learns to relax and float, buoyed by the water, soothed by the sounds of tiny waves gently lapping against the wall of the pool.

It can take people many attempts at recovery before they can jump in the deep end. Sometimes fear gets in the way. Other times it's the intensity of the eating disorder thoughts, other psychiatric symptoms or the inability to see life beyond the illness. As a clinician, I feel confident that the people who jump in have a much higher chance at escaping the clutches of their illness but also know not everyone is ready for that moment when they walk in the door for an appointment. 

Those who don't jump in the deep end can still very much be in recovery, but their progress is more like dipping a toe in the water. The water may be bracingly cold or refreshingly warm. It may bear the anticipation of actually getting in the water without having to do so, or it can be a matter of pleasing others by at least testing the water temperature. Dipping a toe does not lead to panic about actual events occurring at that moment but about what might happen in the future. There is progress, but that person is always on safe ground knowing their eating disorder symptoms are well within reach. 

And after testing the water enough times, it's always possible someone will jump in.

In eating disorder recovery, this safer step involves adding small amounts of food per day or trying challenging meals a few times per week. It may lead to times of more exploration in therapy while allowing the imminent use of eating disorder symptoms to wash away the feelings that come up in a hard session. It's a way of testing recovery out and making clear, steady progress without being fully ready to embrace recovery. 

As a therapist, I struggle with how to conceive of the model of testing the waters. There is no doubt that people who dip their toe in the water can better their lives. It enables them to improve nutrition, to lessen the psychological and physical effects of the eating disorder and to make room for more in their lives.

The hardest part is that it's not clear to me if the people who delay jumping in the deep end get fully well. The eating disorder symptoms remain crucial to functioning in daily life. There's no urgent need to find other things to replace the eating disorder, and the ups and downs are not emotional struggles with recovery as much as the ebb and flow of the eating disorder symptoms. On the other hand, that slower process also helps people come to terms with saying goodbye to their illness, a necessary part of jumping in the water.

I vacillate on the issue and there's little research to help with these long term treatment decisions. I worry that my optimism clouds my judgment and allows me to sit with people who are very ambivalent about getting well. But ultimatums just don't help people stay in recovery either, so abandoning treatment for those who need help dipping their toe in the water seems cruel and punitive. However, without jumping in the deep end, the person in recovery can always quickly fall.

The best conclusion is that there are no real answers. Recovery from and eating disorder remains very gray, not black-and-white at all. Although jumping in the deep end is clearly a more significant step to recovery, clinicians need to meet people where they are in the process and work towards more significant steps forward. The kindness and compassion of sticking with someone through their journey in recovery, using the best knowledge of treatment, ultimately means much more than following a specific structure guideline.

And I always encourage and hope that person will walk up to the edge of the pool, summon up the courage and take the plunge. 

Suggestions for Family: The Holidays and Eating Disorder Recovery

This time of year is a challenging one for people in recovery. The holidays are moments of anticipated happiness and celebration largely centered on food and togetherness. The struggle to get better from an eating disorder revolves around painful emotions and isolation. It's no wonder these few weeks can be so difficult, but a few steps by that person's loved ones can go a long way. 

The most important message is understanding. Family members can quickly change the conversation about the upcoming days by choosing to ask how to help rather than assume the worst. Past experience of difficult holidays often prompt families to express their reservations right away. The negative message instantly isolates the person in recovery and makes her feel alone and hopeless.

The best first step is to ask questions about that loved one's concerns and to listen to her worries. The next step can be gently brainstorming for ways to ameliorate the situation. Small changes can make her feel much more cared for. But mostly, the experience of feeling understood pulls her away from the belief that the eating disorder symptoms are the only way to survive the day. The anticipation and anxiety before the day can ease when she is aware that someone else knows about how she feels. 

The process of having a series of conversations prior to the holiday needs to precede action. It's meaningful to help the person in recovery feel understood but will ring false if there are no changes come the actual holiday. Just a few steps to change the tenor of the day will help her feel not only understood but cared for.

Examples could be having specific foods at the meal that will make her comfortable, coaching other family members not to say harmful things or making time on the holiday to check in about meal plans, including even sitting down to a meal earlier in the day together. Prioritizing her recovery even on a holiday will show a level of caring she desperately needs.

The final piece of advice for a family member on the holiday is to emphasize their love for the person in recovery. The experience of loneliness on a holiday highlights her global isolation through the entire time of illness. Knowing that she could never enjoy those moments of closeness with family regularly confirmed how different and alone she has felt.

Fundamentally, that translates into a profound sense of being unlovable. Each conversation prior to the holiday will mean even more when the member in recovery hears that she is loved. Emphasizing that love leading up to the holiday and especially on the holiday itself makes it harder and harder to fall into the eating disorder symptoms. 

Although the three steps for families to support the person in recovery--understanding, care and love--are straightforward, maintaining this direct message still gets hard. The past still hovers over the coming events. The stress before the holidays can waylay even the best plans. A few stray negative comments can upend such a vulnerable situation.

The key is to remember how and why recovery is paramount in three small steps: set up conversations before the holiday; make concrete plans for the day itself; and don't forget to say how much you love her. 

Engagement in Online Eating Disorder Treatment

One significant difference between the pro-eating disorder sites and a pro-recovery online service would be participation.

The people seeking out a community to discuss and facilitate their own eating disorder are caught up in their illness and eager to share and learn more about being sick. Although the purpose is hardly positive, the personal drive to engage on these sites is strong.

But many people go into treatment under duress, and even the most motivated are ambivalent. The inherent nature of recovery will leave most people as reluctant participants at best. Therein lies the biggest problem with online eating disorder treatment: how to get people to join and stay. 

The first place to start is to explore what makes people stick with eating disorder treatment. Eating disorders are all-consuming illnesses that become one's fundamental philosophy of life and, ironically, best friend. Even when that person begins to recognize the sacrifices an eating disorder requires, it's scary and initially unthinkable to let it go.

Accordingly, treatment needs to be very engaging, intense and personal to compete. Therapists need be ready to talk, listen and connect. Discussions around eating disorders and recovery are rarely fun and easy, and any clinician must be ready for meaningful discussions. Therapists need to be real people; therapy relationships need to be genuine.

Similarly, many treatment programs have created a community for recovery even after discharge in order to reinforce and continue recovery. These communities often have their own language, vocabulary and way of interacting to help the person differentiate between the disorder and recovery. The treatment center initiates much of the contact and reminders to keep people invested in their lives and to avoid drifting back into the illness. 

An online treatment model would have to find a virtual replacement for this level of engagement and connection. The purpose of a care liaison is to be sure the person knows someone cares. This endeavor cannot be a money-making venture but a website aimed to help people get well.

In addition, the monitors or facilitators involved in online groups, meal support and forums need to be invested in recovery, real and engaged. An online service doesn't need to create new concepts of eating disorder treatment. It only needs to replicate the model in a new, more available setting. 

Any clinician or program knows that keeping the person in treatment involved and invested is the most crucial step towards recovery. Fortunately, there are many professionals whose job it is to determine what keeps people checking and connected to a website. A small dose of the knowledge of website developers and online marketers would provide the experience needed to point an online eating disorder recovery website in the right direction.

The information is out there to engage people much more directly and regularly than is currently available through more typical eating disorder treatment. And I think the opportunity to create that resource is necessary to provide affordable options for those in recovery. The combination of eating disorder treatment resources with website development and marketing can create a service that can really engage people in a new, available and meaningful way. 

A Liaison to Recovery: Thoughts about Online Support in Eating Disorder Treatment

A search for online support to help people with eating disorders reveals several viable options. Many residential treatment programs offer free online support. These options are support-oriented forums either moderated by a therapist or simply available without any support or supervision. In addition, there are a few attempts at online real-time group therapy for a fee. Several therapists have a treatment manual on their website with forums that include support specifically geared to use that treatment program. 

There are also many clinicians and programs which offer daily support meant to reach out to those in need. Twitter feeds, Facebook posts and blogs all provide ways people in recovery or seeking treatment can find helpful words, sayings and approaches to recovery from an eating disorder. The kindness, caring and compassion available online extend the reach for clinicians to provide necessary help to many people who wouldn't otherwise have access to that support. 

As I have written several times in this blog, increased ease of communication is a boon for eating disorder treatment. Text, email, and videochat allow the option of real-time support for illnesses that are relentless. Even the best therapy session can lose its potency when that person sits down to a meal an hour later. Yet a simple text of support and encouragement right before that meal can transform the experience of eating in the moment. 

None of these observations is novel to clinicians who treat people with eating disorders or to patients in recovery. What is currently unavailable, according to my research, is a treatment service that has thought through the best combination of online and real-time aspects of treatment that could be provided. 

A hypothetical service ought to include many facets. After requesting an initial consultation, the patient could have a first appointment in person or by videochat to understand the treatment available and to be placed in an appropriate level of care. Much as a consultation with a clinician or program, the purpose of the first appointment is to fully assess the person's treatment needs and connect her with the best options.

One of the biggest differences in a more complete online treatment program would be the self-initiated treatment in addition to regular weekly appointments. Regular weekly sessions or groups invite exploration about the eating disorder symptoms and triggers without support at each meal. Even meal support groups offer help at most a few times per week. Online groups or forums could offer support at each meal at any time of the day. In order to access this support, the person would need to reach out for help of her own afford, a difficult step to take.

A way to orient new people to an online program that involves self-motivation would be the addition of a liaison or primary caregiver in the program to the treatment team. This person could stay in contact with the patient several times per day, set daily goals and help her access support at difficult times of

the day. The liaison could be more easily available than clinicians and alert other members of the team to daily progress, information now only really available when a patient is in an intensive, expensive treatment program. 

The liaison can encourage a patient to log on to a real-time meal support chat or app, fill in the food journal or post a journal entry on a forum. Since people in recovery typically feel so isolated and alone in their pursuit of health, a primary point person on the team more available each day could help prevent a difficult day lasting a week until the next appointment or even leading to a relapse. 

This program can also be a service that a primary therapist recommends for a patient. Much as I described the components of an outpatient team earlier in this blog, an online service that provides support forums, real-time groups, as needed meal support and a liaison to check in daily with patients could offer much more of the treatment that promotes actual recovery. This service could fill in the gaps in outpatient care that makes people feel very alone in recovery meal after meal after meal.

Moreover, a well-planned online treatment community could really compete with the growing, powerful pro-eating disorder websites. The outrage against sites that encourage girls to embrace such destructive illnesses hasn't been very effective. In fact, the powerful message communicated by women and girls fully engaged in their eating disorder continues to grow while the recovery messages, like many public service announcements, remain sidelined.

Perhaps one of the reasons for this discrepancy is that pro-eating disorder messages have no ulterior motive: people promoting eating disorders are just spreading the word for what they feel is a viable way to live. But even the most well-meaning treatment websites are run by businesses seeking success or public service sites run by non-profits: organizations unlikely to drum up such an enthusiastic following.

The online presence for recovery has to come from patients as well. One hopes that a service like this one could spread the word more clearly that an eating disorder is a dangerous trap to fall into, not a key to successful living.