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. 

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.

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. 

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.