Welcome to the Eating Disorder Recovery Registry

Our website provides a place for persons who have recovered from an eating disorder to share their stories of recovery.
Our hope is that these stories will provide hope and support to persons with eating disorder as well as their friends and families.

Get Started

Welcome to the Eating Disorder Recovery Registry

We wish to learn about and promote eating disorder recovery. Members are asked to complete an annual survey about themselves, features that may impact recovery, and their experiences of recovery. By posting stories of recovery and study-related information, we will offer hope and support for persons with eating disorders as well as their families and friends. Together, we can help others by learning from recovery!

The Registry

We wish to create a national registry of persons who have recovered from eating disorders so that we can learn from their experiences. People who have recovered are asked to complete a yearly survey with questions about who they are, how they’re doing, features that may impact recovery, and their experiences of recovery. As our study progresses, we will publish the information that we learn in order to help persons with eating disorders as well as treatment providers.
Get Started Using the Registry

Share Your Story

Persons who have recovered are also encouraged to submit their stories of recovery. It is our intent that these stories provide hope and encouragement to persons with eating disorders, their families, and their friends.
Share Your Story


Researcher

Jillon S. Vander Wal, Ph.D. is a Licensed Psychologist, Professor of Psychology, and Director of the Eating and Weight Studies Lab at Saint Louis University where she teaches in the APA accredited clinical psychology doctoral training program.

Who we are

The Eating and Weight Studies Lab at Saint Louis University has created this website to promote eating disorder recovery. Our research addresses the assessment of eating behaviors, models of eating disorder development and maintenance, and the treatment of disordered eating.

Saint Louis University is a private Jesuit university located in St. Louis, MO. The mission of Saint Louis University is the pursuit of truth for the greater glory of God and for the service of humanity. Consistent with Saint Louis University’s vision as a center of research and disseminator of new knowledge, the Eating Disorder Recovery Registry will bring together persons who have recovered from eating disorders and are willing to help others by engaging in research.

In line with Saint Louis University’s vision to serve as a health promotor and provider, we will share the information we learn in order to promote eating disorder prevention, treatment, and recovery. We encourage persons who have recovered to share their stories of recovery.

Our approach

Eating disorders are characterized by over-valuation of eating, weight, shape, and their control. Although multiple studies have examined predictors of eating disorder treatment outcomes, most examine characteristics of people who were assessed prior to or during the course of treatment. None of these studies has examined theoretically driven characteristics thought to underlie eating disorder development and maintenance, and only one study has sought the opinions of people who have recovered from an eating disorder.

Our study will examine theoretically-driven characteristics of eating disorder recovery and elicit qualitative information on personal, social, and treatment contributions to recovery and its maintenance. The information will be used to refine models of eating disorder maintenance and may provide insight into treatment interventions and recommendations.

University

Thank you to Saint Louis University for awarding Dr. Vander Wal a research leave for the purpose of creating this registry.

Saint Louis University is a Catholic, Jesuit institution that values academic excellence, life-changing research, compassionate health care, and a strong commitment to faith and service. Founded in 1818, the University fosters the intellectual and character development of more than 13,000 students on two campuses in St. Louis and Madrid, Spain. Building on a legacy of nearly 200 years, Saint Louis University continues to move forward with an unwavering commitment to a higher purpose, a greater good.

Registry Access

Enter your email address to access the registry. If you are an existing member you will be emailed a link to your portal page. New members will be taken to the registration page.

If you are having issues accessing the registry or have any questions or concerns please contact us.

Resource List


The following non-profit eating disorders organizations provide information on eating disorders, resources for help and support, and avenues for getting involved.




The following organization is a global professional association committed to leadership in eating disorders research, education, treatment, and prevention.


Share Your Story

Please consider posting your story of recovery on our website. We believe these stories will provide hope and encouragement to persons with eating disorders, their friends, and their families.

  • Stories should promote recovery. Stories that promote disordered eating will not be posted.
  • Stories can be posted anonymously, with just a first name, or with a full name.
  • Stories can range in length from a brief paragraph to 500 words.
  • Stories will be edited for content. For example, if you wish your story to be anonymous, but include information that could lead to your identification, we will delete that information. Permission for changes will be sought.


From Monica Seles, “Getting a Grip on my Body, my Mind, my Self” pp. 266-267

“I knew I used food to cope with emotions but just knowing it wasn’t enough to completely stop it. That’s why I created the twenty-second rule. Before letting myself rip into a bag of junk food, I forced myself to sit down and count to twenty. Slowly. During those twenty seconds I made myself answer a very simple question: What was really bothering me? Almost every single time, I came up with the answer before the twenty seconds were up. The next question was: What can I do right this minute to help fix it? Do I need to call someone to sort out a misunderstanding? Do I need to get paperwork done? Do I need to run overdue errands? Do I need to sort out an account with the cable company that sent me an inaccurate bill? Do I need to make a decision about whether or participate in a fund-raiser? Do I need to decide whether my food is feeling strong enough to place in an upcoming exhibition?”

“By the time I came up with something that I could do right at that moment—if it was a tiny action—my urge to eat had subsided and I was tackling the underlying problem. Soon the twenty-second rule became a habit and it became easier every single time I used it. My dad had drilled into me that I had only one life to live, so I’d better live it the best I could. Every time I sat down to a meal, I could make decision. Was I going to treat myself with love and respect, or was I going to sabotage my own happiness and health for a short-term rush? When I approached my meals from a place of empowerment, the decision was an easy one: I chose nourishment over destruction every time.”


Jessica's Story

Recovery is something that I never thought was possible. I think back to when I first entered treatment, I was a scared young woman whose thoughts centered around self-hatred and ways to make my body pay for not being good enough. Sitting in the car I remember pleading with my mom and dad to turn the car around. Two weeks prior, I had left the university because I could not comply with its treatment protocol. My mind, body, and spirit were exhausted; I hated myself for that. I remember thinking, if I had only tried harder I could have continued at school. On that long drive up to my treatment center I remember being worried that they wouldn’t let me exercise, they would make me eat foods that were too scary to even think about, and that I had somehow failed my parents. I swore to my eating disorder that I wouldn’t let go of her; I wouldn’t surrender to the treatment.

That was a little over four years ago. I am now a woman who is still shocked that I recovered. Sometimes I wake up in the morning with my cat next to me, coffee brewing, and think holy shit this has got to be a dream. Freedom doesn’t even begin to describe what it feels like to be in recovery. This is more than freedom. Some days, this is everything I dreamt of and more. Does that mean that some days are not extremely hard? Of course not! Nevertheless, the hardest days that I have now are in no way comparable to the hardest days when I had my eating disorder.

How it happened was not simple. To recover I had to work through and the pain and suffering I had ever experienced. I remember I screamed a lot when I was in treatment. The emotional pain could no longer come out through exercise, restriction, or purging. So, with the help of my treatment team, I was allowed to go outside and scream my lungs out to release the raw hurt that had led me to my eating disorder. All the pain, suffering, exhaustion, strife. I didn’t want it anyone. I finally wanted freedom. Freedom doesn’t come easily; I had moments of denial, lapses, and relapses. It finally hit me that I didn’t want to keep killing myself anymore. I was too afraid to die, and I knew deep down that I deserved so much more.

There are always ups and downs in recovery. Some days you feel as if you are on top of the world. Others you just want to curl up and cry because the rawness is front and center. I think that’s the beauty of recovery; it’s real life. The downs remind me that emotions are there for a reason. I am no longer afraid to feel, and because of that I have become a more authentic version of myself. Allowing myself to cry, scream, giggle, and vent my frustrations if what has helped me get to where I am today.

The thing to always remember is that we are all loved. Even if it seems that no one around you loves you, there are people who truly do. Deep down we truly love ourselves too, it just takes us a little while to find that part of ourselves. Suffering comes out of the lack of love. The cold dismal experiences that all humans have at some point in their lives. Therefore I took the path of love to discover recovery. To sit and meditate on love and self compassion has helped me immensely. To connect to my feelings (parts of myself) and let them know everything is okay has turned my life around. Through reassuring myself, assertiveness with myself and others, and understanding that perfection is the biggest lie ever, I have begun to love myself wholeheartedly.

Many blessings,
-Jessica

Research

This page features research on eating disorder recovery; new research will be added quarterly. In the future, we will post the outcomes of the information collected here at the EDRR.


Food choice and diet variety in weight-restored patients with anorexia nervosa.

Schebendach, J.E., Mayer, L.E., Devlin, M.J., Attia, E., Conteno, I.R., Wolf, R.I., & Walsh, T.B. (2011). New England Journal of Medicine, 360(9), 859-873.


Limited diet variety is associated with decreased energy intake and it may lead to food monotony, or lack of variety and interest in other foods, often seen as routine eating of the same foods. Patients with anorexia nervosa generally consume a limited number of less palatable (i.e., pleasant to taste) foods and simultaneously avoid foods that are generally more palatable. Previous research has shown that limited diet variety has been associated with worse outcomes during a one-year period following inpatient weight restoration in patients with anorexia nervosa.

This study sought to expand upon those findings and provide a detailed description of the types of foods that patients were restricting from their diets. Forty-one women with anorexia nervosa between the ages of 18 and 45 participated in the study. All of the participants had previously been hospitalized at the Eating Disorders Service of the New York State Psychiatric Institute (NYSPI) and restored to a minimum body weight corresponding to a BMI of about 20 kg/m2. Using the modified Morgan-Russell (MR) criteria, 29 patients were included in the treatment success group (MR criteria were met for a full, good, or fair outcome), and 12 patients were included in the treatment failure group (MR criteria were met for a poor outcome).

The failure group consumed significantly less total fat than the success group and the percentage of energy from fat was significantly lower in the failure group compared to the success group. The success group selected a greater variety of foods than the failure group following treatment. Specifically, the success group selected a different food 71% of the time, while the failure group selected a different food only 58% of the time. Additionally, the failure group had significantly less variety from the added fat group, the caloric beverage group, the added sugars group, the miscellaneous foods group (e.g., pasta sauce) and the carbohydrate group (e.g., rice, pasta, potato).

Although the sample size for this study was small and the diet variety groups were based on NYSPI’s menu planning protocol, these results suggest an association between diet variety and treatment outcomes.


What we know about recovery from women who have recovered

Thus far, only one study has asked women who have recovered from eating disorders about their experiences of achieving or maintaining recovery; men were not included. Federici and Kaplan (2008) interviewed 15 women who had successfully completed treatment for AN and maintained their weight at one-year follow-up (defined as a BMI of at least 19). The women identified six core areas that helped them in their recovery:

  • internal motivation for change;
  • perception of recovery as a “work in progress;”
  • valuing of the treatment experience (i.e., as a way to address issues of importance);
  • the development of supportive relationships (i.e., the availability, support, non-judgmental stance of friends and family following treatment);
  • awareness and tolerance of negative emotion; and
  • self-validation (i.e., cultivating a sense of personal worth).

Collection of qualitative information from a greater number of recovered persons may provide new and valuable insights into recovery and its maintenance.

Federici, A., & Kaplan, A. S. (2008). The patient's account of relapse and recovery in anorexia nervosa: A qualitative study. European Eating Disorders Review, 16(1), 1-10.

How many people recover?

Rates of recovery show substantial variation across studies. However, Fichter and Quadflieg (2007) assessed 311 female patients with anorexia nervosa (AN), bulimia nervosa (BN), or binge eating disorder (BED). At the 12 year follow-up, 89 patients with AN, 162 with BN, and 60 with BED were available.

Among patients with AN, 49.4% had recovered, 18% had AN, 15.7% had an eating disorder not otherwise specified, 9% had BN, and 7.9% had died.

Among patients with BN, 69.7% had recovered, 13.6% had an eating disorder not otherwise specified, 10.5% had BN, 1.8% had AN, and 1.9% had BED.

Among patients with BED, 66.7% had recovered, 13.3% had EDNOS, 10% had BN, 6.7% had BED, and 3.3% had died.

Fichter, M. M., & Quadflieg, N. (2007). Long-term stability of eating disorder diagnoses. International Journal of Eating Disorders, 40(Supl), S61-S66.

Contact Us



Where we are

  • The Eating Disorder Recovery Registry
  • Saint Louis University
  • Department of Psychology
  • 3700 Lindell Blvd.
  • St. Louis, MO 63108
  • United States
  • EDRR@slu.edu
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Thank You!

From the Saint Louis University EDRR team