How Long Does it Take to get Better from an Eating Disorder?

The course of an eating disorder from the innocent urge to lose weight to real freedom from the illness is a long road. Each transition between stages of the disease through steps of recovery is a battle. From recognizing the problem, finding good treatment, fully committing to the hard work of getting better and making the personal changes needed for recovery, the path is fraught with hazards and challenges. Unfortunately, the eating disorder treatment community still paints a rosy, unrealistic vision of recovery all too often. Any program that implies that in a few months someone can be mostly recovered is not being truthful. Normal eating patterns can be restored in that period of time, but normal eating and weight only encompass part of a full recovery. It's important to know ahead of time what the path looks like and what each part of treatment entails.

There is frequently a long lag time between the onset of symptoms and entering into treatment. The strong personal attachment to the symptoms, such as the elation of starving or the powerful desire to lose weight, does not lend itself to seeing these desires as anything but natural. An illness is the furthest thing from someone's mind early in an eating disorder. For people with Anorexia, it's as if they have found nirvana: a way to ward off hunger and feel superhuman while miraculously shedding many, many pounds. Years, or a lifetime, can go by before someone recognizes the enormous consequences of this illness. When binging and/or purging are symptoms, shame and guilt serve as significant barriers. Each binge feels like a personal failure, rather than the sign of an illness, and leaves people caught in a struggle between willpower and self-hatred. Seeking help feels like a failure, not acknowledgement of a disease that needs treatment. In fact, on average it takes seven years for someone with Bulimia Nervosa to enter therapy. The time to treatment is shorter with Anorexia due to concern over weight loss, but the intervention is usually based on medical necessity, not any desire of the patient to get better.

The focus of initial treatment is to normalize eating patterns and weight. Clinicians know that a patient needs to resume normal eating to think clearly and reverse any long term medical consequences of the eating disorder. What is frequently not stated early in treatment is that normal eating and weight does NOT mean full recovery. Too many family members, friends and even clinicians equate normal weight with full recovery. My experience is that this false belief is actually counterproductive and prolongs the length of illness. The patient, still struggling with eating daily and the internal turmoil associated with recovery, feels left alone and quickly realizes that only relapsing will cure the loneliness and rally the support again. In fact, a person in recovery needs much more support after eating and weight returns to normal. The eating disorder serves as a very effective coping mechanism, and without it, every patient feels much more afraid and alone and needs extra support to get well.

What makes this second part of recovery, after some improvement in eating behaviors, so challenging is the profound personal transformation that must occur for someone to get better. It's clear from psychiatric research that there is a genetic predisposition to getting sick with an eating disorder. Certain core personality traits predispose someone from the start, but then environmental factors including family dynamics, early exposure to dieting and body obsession and emotional isolation contribute greatly. At some point early in personal development, the eating disorder becomes a central part of that person's identity. As I have stated many times in this blog, the eating disorder starts to feel like much more than an illness; it becomes who you are. Soon after weight restoration and regular meals, the person realizes that the food behaviors only encompass a part of the eating disorder. The thought processes behind the illness, mostly the contradictory sense of superiority about mastering food combined with self-punishment driving every personal decision, have to change drastically in order to get better. This profound realization is always daunting at first. Committing to this transformation means both sustained attention to every meal and snack and the internal psychological work to fashion a new way of seeing oneself in the world.  This is clearly a lot to commit to, but with any perspective to see the true nature of these illnesses, committing becomes the only option.

This part of the work of recovery occurs largely as an outpatient in a gradual, fluctuating process over many years. There are periods of significant progress punctuated by stretches that are difficult. Some days or weeks may include stable eating and the personal freedom of living more fully and others days can feel like falling back into the eating disorder again. Maintaining steady treatment, learning how to be resilient and accepting the psychological goals of recovery are all significant challenges yet are also necessary hurdles to recover and be well. When family, friends and clinicians can learn about the nature of eating disorder recovery, the patient will believe she has true, reliable support through this difficult time. It behooves all parties involved to face the reality of the illness and the time of recovery so that the patient suffering has everyone on her side. The goal in eating disorder treatment is not managing a chronic illness. The goal is to get well. 

A Guide to Finding Eating Disorder Treatment in New York City (and Beyond)

The last post explained the obstacles to good clinical care for all people with eating disorders. However, the conclusions are ideas for the future. What about the people looking for help now? What are the resources available? Considering financial limitations, what is essential for treatment? How does one find all of the options? Which ones are right for you?

The initial, most important step is to find a primary clinician. This is typically a therapist, psychiatrist or primary care doctor with a background in treating people with eating disorders. This person will help figure out what is essential to the treatment, give regular feedback about the available options and instill hope into the difficult process. It's worth spending time and energy to find a good fit. Searching the insurance company database is a place to start but is often fruitless. In New York City programs such as the Eating Disorder Resource Center or the Center for the Study of Anorexia and Bulimia can help find low-cost or in-network clinicians. Training programs like the William Alanson White Center or the Karen Horney Clinic offer sliding scale treatment by younger clinicians who, to enhance their learning, get regular support from their supervisors. The eating disorder program at Columbia University provides free care if the person is eligible to join one of their research studies. And some academic centers such as Mount Sinai have an eating disorder program with limited availability, low-cost therapy with psychiatry trainees. Even if these places do not have the right therapist, calling often opens up new leads in the search. It's better to spend more time finding a primary clinician and not just settle. The right connection increases the success of treatment significantly. 

Nutrition counseling and support are critical for recovery yet also the least liked by any patient. Since people with an eating disorder often know so much about food, working with a nutritionist seems redundant. However, tracking food and assessing progress in eating is necessary. Without it, people can improve their lives in therapy but make no headway with food. Since nutrition counseling is frequently not covered by insurance, the cost can be prohibitively expensive and easily jettisoned from the team. There are creative ways to include nutrition help in an affordable way. One viable alternative, if the primary therapist agrees, is to use food journals more regularly in therapy. The obvious downside is sacrificing a large portion of therapy time to discuss food, but for many people, it's time well spent. For people with binging or overeating, Weight Watcher's can provide reasonably sound suggestions and weekly support, as long as the therapist de-emphasizes weight loss and instead focuses on using the program for nutrition guidelines and meal planning. Other diet programs don't seem to be oriented to recovery but rather just to rapid but temporary weight loss and are not very helpful. An extremely knowledgeable sponsor in a 12-step program such as Overeaters Anonymous may be able to step into this role as well. No patient can afford to ignore nutrition support, and creative ways to find it are available.

The final component of successful treatment is community. Because people with eating disorders are often so misunderstood by family, friends and clinicians, isolation is a huge hurdle to overcome in recovery. Adequate health insurance or financial backing provides opportunities for community support in inpatient or outpatient treatment programs or in group therapy. There are two programs in New York that accept most insurance (Columbia Eastside and Renfrew), but these resources are limited, and the programs aren't right for everyone. Many are left with little recourse to find the right community support. With guidance from a therapist, it's possible to find other helpful alternatives. Some patients benefit from the 12 step approach in Overeaters Anonymous specifically because of the 24 hour support network, the multiple daily meetings and the sponsor system which provides one-on-one help. Many meetings are even geared to people specifically with Anorexia or Bulimia. Agencies such as NEDA (National Eating Disorders Association) and ANAD (National Association of Anorexia Nervosa and Associated Disorders) and ROAED (Reaching out Against Eating Disorders) provide low-cost or free mentors or support groups for patients and families. An outreach-oriented network is a better fit for some people.

Typically, it takes patients a long time to seek help for an eating disorder. The limited options based on insurance coverage and cost can demoralize even a motivated patient. The time and energy needed to sift through dead ends and find the right treatment can slow down even the most determined. There is no central location to ask for help. The information is hard to find, confusing and often unreliable. When one treatment isn't successful, patients often give up without any obvious alternatives.

The goal of this post is to offer some new avenues to those who are frustrated and creative ways to integrate low-cost or free services as part of a recovery plan. Mostly, the idea is to instill hope that it's possible to find a treatment plan that works, and sticking with it can lead to true recovery. I have seen many patients work well with the choices available to them. Although it takes perseverance, I do believe the effort is worthwhile and really can lead to true recovery.

The Socioeconomics of Eating Disorders

The spread of a pandemic is typically measured through means and ease of transmission. For instance, viruses can be spread by a cough or sneeze like the influenza virus or by the commingling of blood as in HIV. The reasons why other illnesses become more common, such as autism or celiac disease, are unclear although many hypotheses, with little rationale, abound. But the spread of eating disorders is even more perplexing. These illnesses began out of the blue about forty years ago as afflictions of the wealthy and moved downward through the socioeconomic classes to reach the entire population.

Several related factors lead to someone becoming ill with an eating disorder. First, there is a clearly proven genetic susceptibility to these illnesses. This isn't to say that a gene confers a life sentence to Anorexia or Bulimia. Instead, people with a certain set of genes have a much higher likelihood of getting sick based on the circumstances in their lives. This genetic risk is evident in the striking similarities between people with eating disorders. Personality traits such as rigidity, perfectionism and black-and-white thinking are pervasive, and an innate ability to withstand starvation differently from most of the population triggers the physical and psychological manifestations of an eating disorder.

When an illness is not completely genetic in nature, then life exposure becomes the risk factor as to whether the person contracts the disease. The risks associated with eating disorders include early exposure to food and weight as a critical aspect of life, severe life stress and social isolation. The foremost risk factor that explains the socioeconomic trends in the incidence of eating disorders is prolonged starvation. The pressure for dieting, thinness and starvation began as an upper class experiment largely in response to the changing food environment and the media blitz of emaciated models in the 1960's and 1970's. The culture of starvation, not a brief fad, extended through media and societal pressure into a multi-generational imperative. Recent decades have shown that dieting is now a widespread obsession of all classes. The other risk factors, personal stress or social isolation, for developing eating disorders existed forty years ago, but it's the inculcation of all socioeconomic classes into the culture of dieting that triggered the explosion of eating disorders in the entire population. 

Prolonged restriction of food intake triggers a biological evolutionary response based on generations of experience with famine. Natural selection determined that people adapted to best survive prolonged hunger survived, and their genetic adaptations have continued through the ages. Survival could mean several possible metabolic adaptations, for example, more efficient use of energy lowering caloric needs or more effective energy storage during times of plenty leaving a reservoir for lean periods. One's biological reaction to starvation, a primarily genetic function, determines an individual's reaction to the risk factor of starvation. Eating disorders don't choose by class. The epidemiology of eating disorders simply followed the path of starvation.

The critical difference between the classes is access to treatment. All data points to a need for early, complete intervention to decrease the chance that an eating disorder becomes chronic. With few treatments being reliably effective, especially for Anorexia Nervosa, the options recommended by experienced clinicians are time-intensive and prohibitively expensive. Moreover, health insurance rarely covers more than a fraction of most effective options, if they'll cover anything at all. There is no quick fix, no medication cure, no short-term treatment option. Any experienced practitioner knows the path to recovery is long and arduous and demands a dedicated and knowledgeable treatment team.  And that costs money.

The wealthy people with eating disorders suffer as much as the poor. I want to be clear about that. The opportunity to attend expensive treatment facilities certainly doesn't guarantee recovery, although it does offer a greater chance to regain weight, stabilize eating and start the process of getting effective, long-term help. Instead, the current system condemns the lower socioeconomic sufferers to limited care with a much higher risk of remaining sick for the long term. Eating disorders may no longer be afflictions of the rich--most of us diet these days and unwittingly tempt our evolutionary fate--but the poor who do get sick are left without any accessible treatment.

The solution relies on a collaboration between low-cost insurance plans and the larger private and hospital-based treatment facilities. These large bureaucracies can form an agreement to provide care to the sufferers with eating disorders but without means. There are powerful eating disorder organizations--ANAD, AED and NEDA--with enough clout to further this discussion and educate the interested parties about how inadequate the affordable options for treatment really are. 

The New Food Movement

The evolutionary theory of eating disorders and obesity took a step into the spotlight last week with the preview of a large study into humans’ innate response to the shift in available food in recent decades. Although the research focused on obesity as a public health concern, the steep rise in all eating disorders stems from the same cause. The abundance of food available on every corner, beckoning around the clock to our insatiable appetites for sugar, salt and fat, renders ineffective our traditional, biological checks and balances on hunger, fullness and weight maintenance.

Our bodies developed ingenious systems to respond to and store sugar, salt and fat during the eons when these valuable food resources were in limited supply. Foods with large quantities of these ingredients deactivate the system that triggers our sense of fullness. Thus, during all too brief moments of plenty, earlier humans gorged on treats, never knowing when their next rare opportunity might arise. The human metabolism adapted to store these precious substances quickly, with the evolutionary edge conferred on those who did so most efficiently. 

It's abundantly clear that this adaptation is no longer useful in today's world; it may, in fact, be the root cause of our biggest problems with food. Those who can suppress fullness most successfully are now labeled with “binge eating disorder.” Those who store this bounty most effectively are obese. On the other end of the spectrum, our culture of constant dieting triggers the onset of chronic food obsession, or--in people whose biology evolved to use limited resources most efficiently--anorexia or bulimia. The result of this endless smorgasbord, the largest of its kind in human history, is obvious to clinicians treating eating disorders and obesity: Our modern food world of overabundance has created a whole new set of illnesses, not just physical but mental.

While the food and diet industries exploit this evolutionary weakness, current attempts to control the pandemic are ineffective. Clinicians suggest a variety of meal plans that remain within the guidelines created by the food industry itself, re-juggling calories and nutrients to little effect. Concerned reporters try to slay the agribusiness Goliath as if it were the cigarette industry, but forget that eating, unlike smoking, is a daily necessity. Emphasizing whole foods, fruits and vegetables is a worthy goal but has done little to stem the rise in obesity and eating disorders. Government, as always several steps behind, touts individual-based initiatives like “Move Your Body!” while obliged to remain in the good graces of powerful food industry lobbyists.

Meanwhile, the media cynically exploits our powerful attraction to food and weight-related stories. In just the last few weeks, Vogue published an article on a mother putting her seven-year-old on a brutal diet, and The New York Times ran a piece on sanctioned medical starvation for a bride-to-be, via a naso-gastric feeding tube (in the Sunday Styles section, moreover). Articles like these, published by respectable, mainstream media sources, merely emphasize how steeply the odds are stacked against those who are battling to normalize their weight and eating habits.

In order to lead ourselves out of this crisis, we must tear our gaze from the abyss of surgical interventions, cosmetic solutions, extreme diets and the binge-starve cycle. The only real answer is a grassroots one. Just as our genetic lineage is encoded for survival, the most effective advice for successful eating and weight management lies in history and tradition. Families carry their pasts through stories and food for one clear reason: nothing is more critical to human survival than knowing how to eat. We have come increasingly to revalue heirloom foods, but let’s also give new value to past eating traditions, which used available products to create hearty and nutritious fare. Eating with family or loved ones, moreover, blends pleasure with healthfulness, something clearly lost in today's world of convenience foods gobbled on the go.

While it's unrealistic to exhort the masses to recreate Grandma's kitchen, we can create new food communities, loosely based on the past and strong enough to confront industry. The farmers’ market and Slow Food movements are a good beginning. When communities organize around traditions of how to eat, people have a philosophy of eating to cling to that isn’t funded by a diet company or the conglomerates manufacturing the processed foods that are sickening us. Equating obesity or eating disorders with a simple lack of willpower, as so many do, merely divides the population and ignores the larger causes of the problem.

Harnessing the energies of people interested in and concerned about food--artisanal food makers, a new generation of farmers, parents and young people--can put traditional food values back on the map. Those espousing these new/old food values need to organize into a public and political entity, focused not on portraying industry as evil but on recognizing that true public interest lies with the public. If we continue to let the arbiters of fashion and opinion tout the latest fad diet or wonder nutrient, we allow ourselves to be herded down an evolutionary sinkhole. Let’s put our heads--and stomachs--together in the service of returning to a tried-and-true kind of eating, one that combines tradition and community and returns food to its rightful, valuable place as food.