12/12/13

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. 

11/27/13

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. 

11/15/13

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. 

11/4/13

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. 

10/18/13

New Thoughts for Eating Disorder Treatment Options: When the Healthcare System Fails


The last post reviewed the limitations imposed on eating disorder treatment and recovery by health insurance. Too many people leave treatment early and prematurely because of insurance limitations and decisions. The expense of full treatment can run very high as treatment lasts months or longer.

In the current health care climate, insurance will rarely cover adequate treatment for sustained recovery. But the problem just mutates in other health care systems. In a universal health care system, patients will receive full treatment but instead endure long waiting lists for care, also not an ideal situation.

What alternative treatment, likely outside the conventional health care system, could circumvent these issues and provide viable solutions for people in recovery from an eating disorder? Any option must include three basic components of treatment.

First is meal support. Recovery must in part focus on meals and snacks to re-train the mind and body to eat regularly again. The key here is support involving human connection and emotional support to get through each meal. Left alone to face the eating disorder, people in recovery quickly become demoralized and hopeless. 

Second is community. Eating disorders isolate people from friends and family. A significant part of recovery is learning how to engage with people and relationships again in an honest, real way. These connections reinforce life outside the illness and remind the person of the myriad reasons to eat each meal. The isolation gives more power to the eating disorder as a source of identity and as the only effective coping mechanism for life.

The third component is directed help to constantly question the eating disorder rules, beliefs and actions. In treatment, clinicians gently but directly shine a light on the destructiveness of the eating disorder. Without those constant reminders, it's too easy for the well-worn patterns of the illness to dominate the person's thoughts and actions and derail every valiant attempt to get well. The eating disorder beliefs become so ingrained that they feel like an absolute truth. A person in recovery needs help to always question these beliefs and not fall under the spell of the eating disorder again. 

Yet the standard treatment for people with eating disorders, outside of expensive programs, involves a number of appointments with clinicians per week and group therapy geared specifically to eating disorder patients. This arrangement provides elements of each of the three necessary components but with limitations. The person is left to navigate the treacherous road to recovery alone most of the time. The result is fending off the onslaught of eating disordered thoughts, struggling through each meal and continued painful isolation. 

The changes to daily living in the last decade seem tailor-made for eating disorder recovery. The ease of staying connected enables people in recovery to have real-time support and community at every turn and every meal. That support can come from clinicians and friends. In fact numerous studies have lauded text messaging as a tool for eating disorder recovery. A few clinicians have set up an online education systems with forums designed to provide support. Many treatments now involve email for anything from food journals to written therapy. Videochat services offer new alternatives for therapy sessions as well. 

However, the pro-anorexia and pro-bulimia websites are still more prevalent and more supportive than the online recovery options. Perhaps the drive for people with eating disorders to get support for their illness is stronger than the drive for clinicians or patients to create similar online forums.

I think it's time for clinicians and patients to join forces and create a portal online to offer the support people need to get well. If the treatment options and health insurance limitations in this country are not sufficient, then it's a duty of people dedicated to eating disorder treatment to create new avenues to help people stay in recovery. 

More about this in the next post.

10/3/13

Health Insurance in the Treatment of Eating Disorders: New Solutions for Recovery


Mental health care, already the stepchild of the medical establishment, will continue to have limited coverage in the new year when the Affordable Care Act begins to offer a marketplace for new insurance plans. In recent years, the media has covered the limited benefits and the financial hardship individuals with psychiatric illness and their families endure. Much of the blame in these stories lies with the lack of evidenced-based medicine in standard treatment, a fact insurance companies use to deny treatment every day. However, it doesn't seem right to penalize people whose illnesses have yet to be well understood. If the underlying problem is limited scientific understanding of brain function, shouldn't the system afford these patients equal care?

The newest leap into insuring all people with reasonable health care will continue the limited treatment for people with eating disorders as well. The scientific knowledge of these illnesses is extremely limited, more so than most psychiatric illnesses.

There are a handful of research studies supporting evidenced-based therapies but with only short-term limited results. Any experienced clinician knows that full recovery is a long process which involves a multi-disciplinary treatment team and often inpatient or outpatient treatment programs.

Over a period of months to years, effective treatment is expensive. Even the best insurance plans cover only part of the course of successful treatment, and most cover a fraction of the overall cost. Nowhere in the health insurance overhaul is there a provision for adequate long term treatment of mental illness, including eating disorders.

In the past, the stereotypical eating disorder patient was a wealthy Caucasian girl in her teens from a family with the means to pay for any available care. It's unclear whether this assumption was based in fact, but these illnesses no longer appear to discriminate by socioeconomic level or race. With the spread of eating disorders across all class lines in the United States and across the world, the reality of inadequate treatment options is unavoidable. Inquiries into my practice routinely come from patients and families aghast at the lack of resources in the community, especially those that accept health insurance. 

It is true that people with less means have significantly fewer treatment options. Based on knowledge of long term outcome of untreated people with eating disorders, the discrepancy in care between those with means and those without will lead to poorer outcome. Inequitable health care is a problem across all medical illnesses but there are no viable alternatives for eating disorder patients without the means to access treatment outside the health insurance plan.

These patients flock to two forms of help: free programs such as Overeaters Anonymous, a 12 step program akin to Alcoholics Anonymous, and the very limited options covered by insurance. Some people find a path to recovery this way, but many are left to soon give up hope and accept the eating disorder as a fact of life.

Advocacy for increased coverage for eating disorder treatment and for public education about these illnesses remains a mainstay of organizations such as AED and NEDA. They play a powerful national lobbying role to be sure the growing reach of eating disorders isn't ignored, but clinicians attempting to change the reality for individual sick patients and their families need more immediate options for treatment. 

I had hoped by starting this blog to reach more people with useful information and to create hope for those out of treatment options. Although that has indeed been the case for the people who have contacted me, the needs are just too great.

In the next few posts, I will try to explore new avenues for support and care of eating disorder patients outside the insurance bubble. The interconnectedness now a given in today's world hasn't changed eating disorder treatment enough yet. And if the health care system can't keep up, then other ideas need to fill the void. 

9/20/13

Legally Forced Treatment of Patients with Eating Disorders: Pros and Cons


The law has a long and varied history with respect to mental health treatment, especially involuntary hospitalization of the mentally ill. The pendulum has swung from patient rights to public safety many times, balancing the personal liberty of the mentally ill against the danger these people may pose to the public.

The latest significant swing of these rights was the eviction  of tens of thousands of patients from state hospitals after most of these institutions closed in the 1980's. There were clear pros such as greater personal liberty and cons, many of these people ending up in the prison system.

The continued effect on patient safety and well-being is that it has become harder to hold patients in a hospital if they are deemed a danger to themselves or others and very difficult for the most ill patients to go to longer term state hospitals, a treatment option that can provide considerable safety, stability and long-term benefit.

Recent decades opened new debates about the role of the court in the treatment of patients with life threatening eating disorders. These laws were created for patients with illnesses that threaten both their well-being and those around them, typically psychiatric episodes that include losing touch with reality. However, people with eating disorders don't lose touch with reality and don't cause any harm to the public. The overarching question is how far should the state safety net reach in eating disorder treatment?

Some states allow involuntary treatment of these patients due to the severe medical consequences, including death, of their illness while other states don't. A requirement for the court to grant a legal order to hold someone against their will is that the patient be at risk for severe immediate harm and not understand the condition and ramifications of their illness, legally termed competence. 

It's easier to make this legal case for patients with schizophrenia or a severe bipolar episode since the symptoms of the illness show a clear break with reality. No one will question the competence of a patent who believes the FBI planted a chip in their head. It's also likely that medications will at least mitigate the psychiatric symptoms quickly and effectively enough to avoid immediate danger. Indeed these laws were intended to address this type of psychiatric emergency.

But many of the sickest eating disorder patients understand the severity of their illness, even at the most dire moments, and still cannot eat. Unlike a patient with schizophrenia, someone with an eating disorder is typically much more aware that the state is mandating treatment against their will and demonstrate competence by comprehending and being able to repeat back their predicament. In addition, a few weeks of nutrition is unlikely to alter the course of a severe eating disorder, so the potential benefit of the legal decision is much more cloudy. The process used for other psychiatric situations doesn't apply as directly or effectively for patients with eating disorders.

The purpose of a court-ordered involuntary treatment is twofold: protecting the patient from immediate harm from the illness and protecting the public from the patient. In the case of eating disorders, the first has questionable effect and the latter is not relevant, but there is a third, more subtle component to the decision. The concept of dying from not eating is anathema to most of the public, and this loophole allows a legal, immediate resolution. 

The act of publicly forcing a patient to eat is a paternalistic approach to a perturbing, stubborn, growing public health problem in modern society. There's no evidence that forced treatment will do more than improve nutrition and health for a few weeks, but the act of involving the court allows hospital staff and administration to believe everything has been done to help this patient. In fact, any forced eating typically triggers more anger and self-punishment for the patient which leads that person back to worsening eating disorder symptoms. 

Eating disorders are serious medical illnesses as much as psychological ones. Although the psychological symptoms must be addressed for full recovery, all the physical symptoms are a result of poor nutrition and starvation, which affect all of the body's organ systems, including the brain. First and foremost, recovery involves restoring adequate nutrition. Without that step, the patient can make progress but can't step into full recovery. 

That being said, eating disorders are also lethal illnesses. Other psychiatric illnesses cause so much suffering that they can lead to suicide. That happens to patients with eating disorders as well, but eating disorders themselves also kill people. Any clinician treating these patients must accept this fact. Short-term forced treatment is a mere blip in the course of a longstanding eating disorder, and often a harmful one at that. Using the legal system to force feed a patient can engender a deep loss of trust in clinicians, including ones not involved in the decision, and in fact derail long-term recovery.

There are instances when court-ordered treatment has a place for patients with eating disorders, but I think these circumstances apply only when the patient cannot comprehend the severity of her condition, the more rare instances when they are not competent. That will limit the utility of the legal avenue to the type of patients the law intends to help and will diminish the negative effect of enforced treatment on a patient's recovery.

9/6/13

Discharge Planning


Treatment programs have a valuable but very specific role in recovery from an eating disorder. The focused and intense time spent on getting better empowers people to realize that full recovery is a viable endpoint. People learn an enormous amount about their illness. The immediate gains are obvious and, in a positive environment, even points of pride.

In addition, spending time with a group of people all zeroing in on treatment is a relief after months or years of isolation from being sick. Above all, a sustained period of being nourished diminishes the physical, emotional and psychological symptoms of an eating disorder drastically. More often than not, people complete a program in a better place than when they started. Although that may seem like an obvious statement, intuition is often not helpful when it comes to choosing treatment for people with eating disorders so this is a crucial fact to remember.

Still, entering a program isn't the best choice for everyone despite the likely short-term improvement. Research and experience prove that these gains don't last more than a few months for most people for several reasons.

Eating disorder treatment is time-consuming and expensive. Much thought needs to go into the decision both in terms of potential benefit and the likelihood of treatment kick-starting true, long lasting recovery. No one has enough resources to make repeated hospitalization a viable option: it only reinforces that an eating disorder is a chronic, incurable illness.

A quick relapse can be incredibly demoralizing and delay recovery for months and years. Too many people who go to treatment programs prematurely just cycle through the different options for treatment without any true progress. Granted, medical emergencies such as being severely malnourished or low potassium from purging may necessitate urgent inpatient treatment; however, it behooves clinicians and patients to consider likely outcomes before committing blindly to a detrimental course of treatment.

Any reasoned approach to residential treatment must include discharge planning at the very start of the treatment. Too many programs are so intently focused on the day-to-day operation of their bubble that they neglect to fully consider how challenging the transition is from 24 hour support to just a few hours per day at most. Even the best programs struggle to include the outpatient team in treatment decisions and discharge planning, even though it's the outpatient team that will implement the treatment and that knows how reasonable and realistic the plan is. Outpatient clinicians feel they can take a break when a patient goes into residential treatment, but that only worsens long-term outcome.

Discharge planning needs to start on the day of admission to residential treatment. Doing so will force inpatient and outpatient teams to communicate right away. That interaction will uncover basic assumptions of both teams and allow for debate and thorough consideration of all possibilities.

Moreover, it will give time to present the options to the patient so she can have a say in the process as well. A patient involved in these decisions will have ownership of the treatment and will be much more like to follow through. 

Since the benefit of these steps is pretty obvious, the real question is why doesn't this happen automatically? I don't have a good answer. Part of it may be the disjointed nature of care for people with eating disorders. There are no guidelines for transitions in and out of residential programs. Also there tends to be a sense of superiority in American clinical care which enables competition between various stages of eating disorder treatment, not collaboration. Finally, the lack of any centralized health care agency means there is no accountability for clinicians in their decision making, a necessity to keep clinicians honest and humble.

The bottom line is that discharge planning and continuity of care needs to be of primary importance. It's the key component for treatment programs to be steps in recovery, rather than brief blips of wellness.

8/23/13

Debunking The Myth that People with Eating Disorders can't get Better


There's a myth about eating disorders that people can't really fully recover. I have encountered many clinicians in the community who may not state this directly but organize treatment as if these were incurable, chronic illnesses. Even people who know little about eating disorders often ask me if any of my patients get better, fully expecting the answer to be no. This commonly held myth is widely believed and leads many people seeking treatment to give up hope. 

To be honest, I've thought a lot about why eating disorders are viewed this way. The body of medical and psychological literature reports that people can get well. There are many books of recovered people describing their painful, but ultimately successful, path to full recovery. There are many clinicians who have fully recovered themselves. So if all the easily found information doesn't propagate a message of hopelessness, where does this myth come from?

I think the first culprit is the belief that having an eating disorder is a lifestyle choice, not a devastating illness. Although media outlets don't state this directly, there are very regular headlines that infer that restricting food intake and increasing exercise to maintain very thin weights are the ideal lifestyle choices one can make, not the signs of an illness. 

Accordingly, it can be difficult for many people to differentiate between these supposedly "healthy" goals and an eating disorder. In fact, many magazine articles imply that choosing to eat less and overexercise is simultaneously healthy and synonymous with eating disorders, an extremely confusing and contradictory message.

The truth is that people with eating disorders struggle to eat every meal, not because of vanity, but because it's a symptom of an illness. To most people, it's almost unthinkable to have trouble eating, so it only makes sense to view eating disorders as a lifestyle choice. When people cannot comprehend something, they will concoct a theory that makes sense to them, so explaining to people that not being able to eat is a symptom, rather than a choice, is very challenging.

The second likely cause for the myth has to do with how long people stay sick. Many patients are sick for a long time before seeking help and, once they take the first step, experience treatment with a clinician who isn't knowledgeable about eating disorders. These initial forays into therapy imprint the idea that treatment won't ever really make a difference. It also means that many patients are sick for years before starting a true path to recovery. That extended time without much change in the illness makes it appear to others that eating disorders are lifelong. For friends and family, it's not surprising that they start to believe this will be a chronic curse, an inescapable maze the person is trapped in for life.

I have written much in this blog about family support. Bridging years of separation caused by the eating disorder is challenging but critical to recovery. I find that a significant part of recovery rests on being able to educate families and patients that eating disorders are curable. This step can invigorate all involved to muster enough energy and attention through the difficult process of getting better.

The raw, painful, emotional experience of nourishing oneself and re-entering life doesn't look like getting better, at first. The person usually seems to have things more together when she was even sicker because the eating disorder symptoms numb any emotions. Starting to eat again instead unleashes these feelings. If family and friends work hard to understand that the painful process is necessary to lead to full recovery, the chance of really getting better goes up significantly.

There's one other reason our society has trouble seeing people with eating disorders get well. It has to do with how we glorify these illnesses. Idealizing thinness, even being clearly underweight, reflects our collective understanding about eating disorders. The process of getting sick with an eating disorder is encouraged by the outside world. There are too many stories of adolescent girls enjoying praise as they lose weight only to find that they cannot stop the descent into an eating disorder.

As long as we make extreme thinness a goal, we will conflate desire with disease. In this case, how can anyone see an eating disorder as curable? Part of shattering the myth that eating disorders are lifelong is convincing people that there is nothing desirable about being too thin or about being sick. No one would choose a lifestyle that strips so much of life away.

8/7/13

Family Support in Eating Disorder Recovery


For those lucky enough to have it, family support is a critical part of eating disorder recovery. Family dynamics though often play a role in the inception of an eating disorder so that type of support is far from a given. In fact, distancing oneself from family often behooves a person trying to get well. That doesn't mean families cause eating disorders, a once standard explanation for the cause of these illnesses. However, if the family situation wreaks emotional and psychological havoc, the child can be more susceptible to developing an eating disorder to begin with and can have more success in recovery with separation from family dynamics.

In the situations where families can heal from prior emotional troubles and provide support for the child in recovery, family education is of primary importance. As I have written extensively in this blog, it's not intuitive for anyone to understand the fundamental struggles of someone with an eating disorder.

Eating meals when hungry and stopping when full are standard daily activities for everyone, much like brushing your teeth. Imagining each bite of food to be a monumental struggle is beyond most people's comprehension.

Families need to read books, talk to clinicians and, most importantly, speak to their loved one regularly. This immersion in self-education is a necessary and meaningful attempt to truly understand the torture of an eating disorder and will enable family members to learn how to comfort and support their family member who is ill.

Typically, the person with an eating disorder has withdrawn during the illness. The symptoms, both behaviors and thoughts, are all consuming and lead to isolation from daily life and interpersonal interactions. So families become used to that distance and imagine the family member functioning independently, self-sufficiently and much more capably than she really can.

The process of recovery and re-engaging with the family can be a shock. This typically independent family member instead appears very unstable, intensely emotional and very scared about the seemingly innocuous task of eating several times per day. As recovery progresses, even more so when the progress is steady, she becomes much more emotionally unstable rather than less in the following months and much more outspoken about needing help.

Anyone's instinctive conclusion would be that these emotions represent regression, not steps towards recovery, but the opposite is actually true. Nourishing one's body and mind unleashes intense emotions and forces the ill family member to create new ways of coping with daily life without the numbing effects of the eating disorder symptoms. Not only does this surprise families but also elicits powerful emotional reactions. 

The most common family reaction is frustration. As recovery continues and eating remains difficult, family members lose patience to remain outwardly supportive. It becomes more and more difficult to understand why a meal could be so hard even after a period of treatment. Families inevitably express the same reaction at several points of recovery: "Just eat more food!" "It can't be so hard to have breakfast!" "Why do you still feel so bad after all this time?" 

These comments are part of their family member's eating disorder internal dialogue every day. In fact, these are the thoughts she is trying to escape. She is aware of how hard it is to get better. She knows she can't do something that is simple and automatic to people without eating disorders. She routinely has similar critical thoughts that remind her of these facts many times per day. When families confirm these thoughts with their own frustrations, the family member will quickly retreat back into her shell. Those reactions only reinforce the illness.

As challenging as it can be for families, the best support is always kindness and compassion. Anyone with an eating disorder has to deal with constant internal criticism. That pressure is exhausting and demoralizing. No amount of kindness and encouragement is too much.

Kind comments, even repeated every day through the process of recovery, make a world of difference: "I'm so proud of you." "How are you doing today?" "We all are behind you and know how hard you're working every day." "We love you and will always support you any way we can to help you get well." 

If family struggles can be put in the past, then consistent, reliable, compassionate support will help the family member persist through the struggle to recover. If family dynamics have been too painful or traumatic, then the clinician must make it safe for the person to protect herself from family in order to get well. The most important quality of any support is kindness. It is what makes recovery possible.

7/25/13

The Role of Coping Skills in Eating Disorder Treatment


Eating disorder treatment programs focus a significant portion of education in recovery on coping skills. These tools don't always translate easily from a closely monitored program into the real world. As a psychiatrist and therapist who works with many patients just discharged from a program, I help people negotiate the transition back into their lives and have worked hard to make sense of how coping skills can be constructive in recovery. I think the idea is useful but could also benefit from some clarification.

The concept of coping skills has a research foundation and therefore a pertinent beginning. The cognitive behavioral therapy model--the most used modality to treat eating disorders--helps patients identify moments in a day when they become vulnerable to eating disorder symptoms, mostly binging or restricting. Once the pattern and triggers are clear to the patient, the next question is obvious: what do I do next to stop the behaviors? Therapists don't always have the answers. It's easier to identify the patterns than it is to break them.

The default answer is to use coping skills. Effectively, this means sit with the urges to do eating disorder behaviors and distract yourself with a variety of mundane activities until the urge passes. It's assumed the urge will pass. This assumption is a result of the original research used to support CBT, first performed in mice, supported by increasing knowledge about brain function then applied to humans. The research conclusion is scientifically robust yet simple: one's urge to do something (drink alcohol, perform a compulsion as in OCD, avoid a scary place, use ED symptoms) will diminish if one can push through the anxiety and urges over a period of time, generally weeks. The gradual decrease in anxiety is called habituation.

With handy research in mind, the next goal of treatment is delaying the symptoms in any manner possible. Coping skills tend to be typical daily activities that pass the time: walking, reading, seeing a movie, calling a friend, painting your nails. Without other alternatives, most patients will try the coping skills with varying success depending on their progress in recovery. It's rare that someone doesn't throw up their hands and say, "There's got to be something better than this in treatment." But that's not necessarily the case. 

Treatment programs have, for obvious reasons, much more success stopping the eating disorder behaviors than outpatient options. It's much harder to follow through with the symptoms when you're being watched 24/7. So people in treatment programs have hours during the day when they have to sit with the urges and can't do anything about it. This provides ample time to practice coping skills. But these opportunities are just practice. It's only the real thing when doing the eating disorder symptoms is a viable option. That transition from the constant observation of a program to freedom in the real world makes applying coping skills tricky. 

I very much respect and use the concept in treatment. When eating disorder behaviors are routine, changing them, as with changing any ingrained behavior pattern, takes one's full attention and requires a long period of discomfort. Habituation seems to occur faster in some situations than in others, and eating may be too innate and ingrained a behavior to change quickly. In truth, using coping skills is a kinder term for white-knuckling it. But any recovery from an eating disorder requires it.

What the use of coping skills points out to me is the weakest link in the recovery. When someone is able to identify risky periods during the day, the points of vulnerability--the times when the eating disorder threatens to take over--become apparent. It's critical to realize that failing at coping skills is not failing at recovery. It just points out where work needs to happen in treatment.

There is a certain kind of learning through repetition, namely slips into eating disorder symptoms, that happens back in the real world outside of a residential treatment program. Those times when coping skills don't work typically point out where someone doesn't yet believe or understand the psychological adjustments necessary to push through the urges. Examples are not being able to eat enough to satisfy hunger or the inability tolerate being full or the fear of gaining weight or not being "small" anymore. If a significant amount of time in therapy is devoted to arguing or bargaining around these issues, then it's clear what the snag is. Meal plans and adequate nutrition aren't bargaining chips or variables. They're the only way clinicians can track medical stability and progress in recovery and the only path towards recovery. Although there are different, often creative, ways to reach these goals, in the end they must be met. 

Coping skills work best once a patient and therapist are on the same page with these central aspects of recovery. Then there's a purpose to experiencing long periods of discomfort or even pain. Once the eating disorder thought process is no longer primary in someone's self-assessment, white knuckling it becomes a difficult but necessary part of getting well.

7/11/13

A New Take on Identity and Eating Disorder Recovery


Far From the Tree, a true masterpiece of a book written by Andrew Solomon, addresses the link between identity and various illnesses and disabilities for children and their parents. I can't do justice to the work, but his thesis has clear implications for people with eating disorders and is very relevant to this blog.

In fact, he briefly addresses anorexia and bulimia, referencing pro-Ana and pro-Mia websites as examples of activist movements for people with illness or disability. However, he quickly dismisses the premise because eating disorders are fatal and thus cannot compare to similar movements such as for deaf people or dwarfs. 

To be fair, Mr. Solomon didn't research eating disorders in the way he so thoroughly did the other issues chronicled in his book. He may have been better off leaving this one alone, but he does touch upon something critical and confusing about how eating disorders are linked to identity.

The controversial eating disorder websites are certainly dangerous, and supporting an eating disorder as identity only increases the morbidity and mortality of these diseases. But in light of the topic of identity, the pro-ED sites also reinforce two things necessary for successful recovery. First, much as the other illnesses Mr. Solomon discusses, people with eating disorders did not choose their disease and don't choose to stay sick any more than someone with Down's Syndrome or cerebral palsy. Second, unlike these other issues, people with eating disorders can get better but the process involves relinquishing the core of identity since adolescence--the opposite of the premise of the book.

Mr. Solomon draws the reader in to story after story of heartbreak, resilience, transformation and acceptance. After hundreds of pages, it's exhausting but exhilarating to realize these stories could go on ad infinitum. A crucial part of each person's path is acceptance of the limitations of the illness combined with taking pleasure in what life can still offer. Implied in acceptance is coming to terms with the identity of the disability or illness, both for the person afflicted and for the parents.

There is a clear demarcation here between eating disorders and the illnesses described in this book. Chronic eating disorders always intertwine the thoughts and behaviors of illness into identity, inextricably and with finality. The result is that the person feels bereft even at the thought of letting their illness go.

Recovery involves stripping away all sense of oneself so that this person can start over, raw, unprotected and very much alone but with the hope of a life free of this terrible affliction. Disavowing one's identity for anyone discussed in Far From the Tree is denial and leads to an extremely limiting life. Doing so with an eating disorder is a painful but necessary step in recovery.

The activism in the eating disorder world must explain that recovery involves relinquishing identity to start over. Learning how to live without one's guiding force, destructive though it was, is a tall order. Recovery means creating a new self and life, not just eating more food.

6/19/13

The Process of Recovery from an Eating Disorder


Recovery from an eating disorder is a process. For people who see the world in very black-and-white terms, namely those with eating disorders, the concept of process is a tall order. It implies ups and downs, swings that feel very powerful emotionally and days when all seems for nought. Years of an eating disorder wear down even the preternaturally hopeful and binds any optimism into a vortex of doom. In such a dramatic place the whole idea of process appears incredibly naive.

But the process of recovery is what we clinicians have to offer. Put simply, simple tools practiced over time really do work. Write a food journal every day; plan your meals the night before; be active during the day, especially after meals; be around people, even when you want to be alone; and pay attention to your feelings for they are the best clues to stay on the path to recovery.

When the person in recovery knows that her therapist and treatment team are willing to go through that process too, she knows she's not alone. That makes all the difference in the world. 

The concept of process implies another necessary component in recovery: resilience. The path of an eating disorder typically leaves people feeling completely powerless. The best laid plans falter from the get go. A day derailed early never gets back on track. The mantra of the person with an eating disorder is "I'll start towards recovery tomorrow," but tomorrow never comes. It's a new idea to contemplate resilience in the face of the eating disorder commands. That simple suggestions and support can alter the eating disorder symptoms feels miraculous. It feels impossible for a day to start off challenging and turn out all right. Yet experiencing resilience revitalizes true belief in hope again. 

Once process and resilience become real to the person in recovery, she begins to experience something very new and raw. The despair connected with the lost time of an eating disorder and the numbing effect of the symptoms both limit any knowledge of the true emotional experience of daily life.

Regular people learn to cope with their own emotions through years of practice. They come to know themselves and how they can live with their feelings, some constructively and some less so. A person in recovery is suddenly thrust into a world of raw, intense emotions, ones she hasn't experienced in a long time. Even a crash course in personal exploration doesn't prepare her for the jarring blast of the panoply of emotions: sadness, anger, disappointment, shame, frustration and fear. The pull to use eating disorder symptoms and return to numbness is very strong, a salve for all the open wounds, but one that only leads back to despair.

When it comes to the emotional life of recovery, each person needs to understand the process too. Time will heal those wounds. Emotions may feel like a bottomless pit, but the bottom comes before you know it. Emotions for someone in recovery are, in the end, the same as everyone else's. It just takes time to get used to them. The simple things people do in order to weather emotions works for those in recovery: talk to someone, journal, watch a movie or just cry. These tools seem inadequate, perhaps even trivializing, at first, but emotions are just a part of life, a reality of being human. No powerful intellect or personal mastery allows anyone a pass on feelings. The mastery is akin to acceptance: the process of succumbing to emotions in the moment, even of you're unsure of the path ahead, is bearable when you remember you'll be all right in the end. 

This last step points out one more step in the process, trust. A person in recovery doesn't know how to trust their own instincts or ability to make reasonable decisions each day, let alone trust anyone else to guide them. The eating disorder has been the only guide in life. Yet believing in hope, resilience and emotions requires trust in oneself, clinicians and family. This is not a path one can forge alone.

The ups and downs, moments of elation or panic and feelings of hopelessness and despair will be unbearable for a person completely alone. People to share these experiences with and shoulders to cry on will mitigate what feels insurmountable. That support enables the person with an eating disorder to work just as hard the next day until recovery starts to feel like it's paying off. Given the necessary time, the process of recovery works. People sick with eating disorders do get well. 

6/6/13

"Fat Talk:" the Startling Column in The New York Times


It was surprising to see a health column in the New York Times about the risks of women engaging in "fat talk." For years this weekly section has been a soapbox for over-exercising and supposed healthy eating, and, in the journalist Jane Brody’s column, the weekly standard of the section, at times leaning even towards unethical. The increasing attention to topics such as treatment of chronic running injuries in middle age has been worrisome. But perhaps the growing media shift away from body and weight finally caught the paper’s eye. 

The article raises awareness and provides evidence for the risks of women who bond over body and weight concerns. The desire for connectedness among women, unsurprisingly in today's world, often includes discussion of weight and body obsession, the current defining piece of a woman's identity. This "fat talk," as the article points out, only worsens a woman's self-image and confidence by validating weight and body as central to a woman's self-worth. The take-away message is clear: fat talk has to go.

The news in the article isn't the headline but the paper it appears in. It's truly notable that a newspaper that touts a journalist like Jane Brody would make this shift on women and body image. The article also presents a true problem for women today: how can "fat talk" become taboo?

As a clinician treating people with eating disorders, I believe a larger transformation in women’s thinking would ease treatment greatly. And if a journalist like Jane Brody could be convinced that food and body, under the guise of better health, aren't the only virtues to aspire to, there is hope for the community at large.

One recurrent disagreement for people in recovery is whether women's behavior and beliefs about food and weight just normalizes eating disordered thinking. Many women with eating disorders feel like everyone is concerned with weight so why are they so different. Clinicians try to point out how personally destructive eating disorders are but can be thwarted by the media attention to food and weight. Until now, columns like Jane Brody's certainly don't make it any easier. If a woman so distorted in her thinking about food and weight can write for the Times, then patients feel justified to hang onto many eating disorder beliefs as normal, healthy thoughts.

True recovery from an eating disorder or freedom from the tyranny of disordered, obsessive eating needs a real transformation in thought process. Just altering eating habits and exercise without ending the waste of mental and emotional energy on the pursuit of a diet or body shape is ineffective and pointless. But it's a hard sell to women to reevaluate their self-image and satisfaction and consider other criteria. It's one thing to help someone recover and another to ask them to be a pioneer in a new world where women are free from the constant scrutiny of shape and weight.

Perhaps this is only the first step in this column’s transformation. It's significant for the paper to recognize and write about the dangers of fat talk. One hopes the editorial staff realizes that years of articles displaying public obsession with running and food could bolster many women's distorted thinking and behavior. One article that implies there must be an alternate way women can connect is important but only the beginning of a more complete message I hope the paper can embrace.

That's the step this column has yet to take. For a woman like Jane Brody, whose identity centers on eating disordered activities and as the major health writer at the Times, she faces a monumental task to reassess her sense of herself and acknowledge the time lost to a fruitless goal. Some attention to food choice and regular exercise clearly has benefits, but the limited evidence points to the obvious: don't subsist on fast food and don't sit on the couch all day. The rest, a large part of her years of work, is myth and hearsay.

A much braver step for such a respected science and health newspaper section would be to question the value of spending so much time and energy on dietary choice and exercise. For a paper with such a platform, the story of a personal transformation could model a change in philosophy unknown in any public domain. The behavior of this longstanding journalist has outwitted the Times' editorial staff for many years. However, the process of a public, personal awakening to her own struggle with fat talk and fat thoughts, even behind the facade of a science writer, would have a significant impact in these changing times.

5/30/13

Medical Risks of Bariatric Surgery


The newest clinician to treat obesity is the surgeon. Although Bariatric procedures can have startling short-term benefits for obese patients and their medical co-morbidities, there's not much reliable data about the long term risks of surgery. I have written frequently about the difficult road to curb overeating and binging, and the decision to have drastic surgery can be liberating. It feels like the magic cure after years of struggle. But the surgeon, without sufficient knowledge of the life and trials of the obese person, typically is not equipped to assess suitability of the patient or inform patients of the real risks of surgery. Instead, they paint a rosy picture of weight loss without any reality check at all and proceed accordingly.

Unlike all other interventions for binging and overeating, surgery is permanent. The goal is to create a physical impediment that will stop someone from eating too much. The surgeon can explain the various procedures and risks during the surgery well, such as the possibility of infection or the risks of anesthesia, but has little knowledge of what happens afterwards. Much of the pre-screening is completed during a psychological evaluation which appears to be a part of the pre-op checklist rather than weeding out patients who shouldn't move forward. The only true impediment is cost, largely based on insurance coverage. After that, almost anyone who meets criteria can have it done.

Changing the anatomy of the gastrointestinal tract has significant medical consequences. This post will not thoroughly review the risks but rather point out some important things to consider. The long term effects of Bariatric surgery are still largely unknown.

After surgery, a much smaller amount of food enters the digestive system, by design. The body adapts by slowing down digestion in response to the decreased need. Over a long period of time, slowed digestion is no longer an adaptation but a permanent change called gastroparesis or delayed gastric emptying. The symptoms are chronic indigestion, limited diet and abdominal pain and, in its severe form, can be debilitating with minimal effective treatment. This condition can lead to permanent gastrointestinal disability.

Medical science is still learning about the complicated interplay between hormones in hunger and digestion. There is a lot of current research into endocrine involvement in the gastrointestinal system to devise weight loss medications. Some Bariatric surgeries take out parts of the stomach that produce these hormones. Since doctors don't know the exact mechanism of hormones in digestion, no one knows what long-term effects low levels of digestive hormones may have.

Bariatric surgery also affects absorption of nutrients, vitamins and minerals in the stomach and small intestines, yet once again it's not clear how or why this happens. Years after surgery patients can have rare deficiencies of micronutrients that humans need in very small quantities of for our bodies to function. Since its so uncommon to see signs of these deficiencies in today's world, most doctors don't check these blood tests and the syndrome goes undiagnosed.

In addition, Bariatric surgery is not a cure for eating disorders. People who binge or manage emotions by overeating find that the drive to use a behavior can outwit any physical impediment. It's too easy for people who have had one of these surgeries to adapt their symptoms and find themselves trapped again but having also undergone an ineffective, painful procedure. A thorough psychological screening needs to identify patients with eating disorders and direct them for treatment before even considering surgery.

It's telling about the current reaction to the obesity epidemic that as drastic an option as surgery is so popular. The misdirection in advertising by agribusiness, the processed food industry and the diet industry has successfully placed blame on the individual. Even the government believes the solution to this public health issue is education and individual choice despite growing evidence that we are powerless to resist the current world of delectable food. All signs erroneously place the blame squarely on the individual. Diets are ineffective and medications supposedly in the pipeline, so for many surgery appears to be the best alternative. The medical literature of the consequences of Bariatric surgery can't slow down the growth of this branch of the health care industry. 

It strikes me that only another part of the medical field can inform the public about these risky surgeries. Doctors only sporadically see patients with severe consequences of surgery because there are no sub-specialists at this point. The surgeries are still new enough that medicine doesn't yet have enough evidence to challenge such a radical approach to obesity. Pooling data among clinicians, a difficult task without centralized medical records, would be very effective. The hope is that the medical system will recognize the risk of Bariatric surgery and respond appropriately in the very near future.