Five Essential Steps for Recovery
By Amy E. Cunningham
My name is Amy Cunningham, and I am a person affected by an eating disorder. I developed anorexia at age 16 when in my first semester of university. Looking back, the early indicators of the illness began probably a year or two prior. I clearly recall beginning a ‘diet’ reading a book that encouraged fasting. I also remember feeling depressed and anxious, without really understanding why. While I failed at dieting in my last year of high school, I had great ‘success’ at anorexia within the first few months of university. I majored in music and spent most of my hours playing my French horn. As the anorexia developed and gained strength, I was unable to maintain social connections or enjoy normal college life. At the end of what outwardly looked to be an incredibly successful first year as a talented musician, I quit school and decided to stop playing my horn. The excuse I gave myself, my family and my musician colleagues was that I had a change of heart about being a musician. The reality was that there is NO room for ANY relationship when you have anorexia.
Back then I had no idea what was happening to me. I did know something was not right. I thought I was losing my mind frankly. I spent hours in the library reading about eating disorders and absorbed a good deal of completely incorrect information about the illnesses. The only available information in the 1980s and 1990s was based on small studies that incorrectly blamed eating disorders on the family, on trauma, on type A personalities. Of course, today we know that NONE of these are correct. We know that eating disorders are genetically linked brain disorders, and that there is a complex interplay between environment and genetics (Bulik, 2019). We are also learning that eating disorders have a metabolic link. A groundbreaking study by Dr. Cindy Bulik, Dr. Janet Treasure and others from King’s College London and University of North Carolina at Chapel Hill found that there are metabolic differences in those with anorexia. (Bulik et al, 2019). Another study found connections between low levels of leptin (a hormone impacting several genes) and high levels of ‘starvation induced’ physical activity in those with anorexia (Hebebrand, 2012). These game changing findings offer even more hope for better and better treatments, and earliest intervention!.
I am also a parent of five children, two of whom developed eating disorders at young ages. In my extended family, I am aware of at least eight people who have had eating disorders, including my maternal great-uncle. While his eating disorder was never diagnosed, he spent 50 years in a mental health facility following return from China where he had been a Catholic priest for many years. His major medical symptom? Food restriction! I feel very sad for this man who spent years with an undiagnosed and untreated eating disorder.
In my case, it was many years before I could say I was fully ‘recovered’. Thankfully my body crashed and I began to eat, but struggled then with bulimia and binge eating. I did not receive early or correct treatment, and suffered through many well-meaning but completely wrong therapeutic approaches. Thus, it took me longer than it did my children to reach a point of good health. I am also lucky that I haven’t experienced overly significant physical damage, despite many years of abuse. I have however had significant dental work, suffered dangerous reactions to anesthesia when very ill and engaged at times in risky behavior.
Five Essential Steps
My recovery and the healing of my entire family I can attribute to these five essential steps:
- Arm yourself with information
Get “ED-ucated”. Read the latest scientific literature on eating disorders and know your stuff. When my youngest developed anorexia I was thrust back again into the world of Eating Disorders and read everything I could find. I read with great relief the results from the Maudsley family-based treatment study (Lock and LeGrange, 2005). This study showed, with scientific rigor, that families are the best allies, that intense refeeding and rapid weight gain, and early intervention, are the most effective approaches in treating anorexia. Myths have been smashed as a result. I read Carrie Arnold’s fabulous book, “Decoding Anorexia” which gave me great comfort and inspiration (Arnold, 2013). No longer did I need to think that my own eating disorder was my fault. Learning the science behind eating disorders makes it possible to be pragmatic about your own illness and recovery, and is critical in understanding how to treat your children. I know that eating disorders are NOT a choice. And that they affect all genders, races, shapes and sizes, ages, ethnicities, income levels. They are fundamentally NOT caused by trauma, dysfunctional families, or simply wanting to be thin. That said, environmental pressures and trauma could contribute to EDs in those genetically predisposed, and would definitely make healing harder. The book ‘Brave Girl Eating’ by Harriet Brown inspired me to keep feeding my daughter (Brown, 2013). I learned first-hand about family based treatment through practicing it, day and in and day out, with well-trained providers (shout out to Dr. Stephanie Zerwas and Adrianna Rodriguez). The fact that I could actually truly help my own children, helped me make peace with my past suffering.
- Get “State of the Art” support from trained professionals
Seek out clinical care – ensure you are honest with your primary care physician, your gynecologist (if you are a woman), your dentist. Even with an active eating disorder, there are approaches to reduce the harm to your body and brain. That alone is a relief. Explore pharmacologic options with your providers. Fluoxetine is approved for treating bulimia and has very good results when also combined with cognitive behavioral therapy to help mitigate and cease behaviors. Other products help with anxiety and depression for those with anorexia and other eating disorders. It is critical to stay in care when taking these medicines and to be monitored. What do I mean by ‘State of the Art”? The gap from new research to clinical practice is on average 17 years! Thus, most providers are not up to date on the most effective approaches to treatment and recovery. Finding a state of the art provider is more challenging than it may seem. Seek out therapists who have recent eating disorders credentials, and ideally who are trained in family based treatment approaches. The major research universities, which are nonprofit, are a good place to start, as are online platforms of parents, and those like me with lived experience. It’s not always necessary to book into months of residential treatment – in fact most treatment will take place through outpatient approaches, even if you may need a short period of inpatient stabilization.
- Eat food!
An absolutely essential component to my recovery, and that of my children’s is that we ate food. And lots of it. And often! All kinds of food with no restriction. For a while after recovery, (and before I knew better), I tried a vegetarian diet and this is NOT wise for a person with a history of any eating disorders. It is incredibly freeing to not feel restricted in ANY way! That doesn’t mean I don’t eat well – I do! Lots and lots of great foods. My favorites are a big juicy cheeseburger and dark chocolate. Eating disorders LOVE to make you think that this food is inherently better than that one. Nope. Do not restrict yourself from any food group (including fats, sugars and carbs) in recovery. In time, when you have a thoroughly nourished brain, the ED intrusive thoughts will fade. I would question any recovery program that does not insist on significant amounts of food, ideally from all food groups with NO restriction. There is huge debate around whether one can really recover on a vegan or vegetarian diet. My personal feeling (and backed up by FBT research) is that unless you were culturally born to veganism/vegetarianism, and unless you were eating like this with full health a good five years before you got sick, it’s not possible to recover fully while restricting. Period. While I won’t go into the detailed types and amounts of food (high fat, high calorie and low volume) I will say that for a good year my daughter ate between 4500 and 6000+ calories EVERY DAY before her health stabilized. Also, have faith that normalcy will return, as it has certainly done for me!
- Get involved in Advocacy
I do NOT recommend an affected person to get involved in advocacy until they are in solid recovery. This is because your health and recovery are FAR MORE IMPORTANT than any other endeavor, and must be prioritized at all costs. It’s easy to get diverted. Don’t fall in that trap. However, once you are in solid recovery (and I would define that as several years without ED behaviors), you might consider playing a role on the policy stage. After all those of us with lived experience are the ‘service users’ of eating disorders treatments, and if we have also been helping our children heal, we are the treatment ‘experts by experience’. While I considered myself recovered before my youngest child developed anorexia at age 11, I was greatly supported by the online community of parents just like me. The group F.E.A.S.T is a parent advocacy group that is the only such organization in the world working for parents and families, doing great work on a shoestring. Tabitha Farrar’s work with adults who are recovering from eating disorders is a continual inspiration. The community is growing.
My online colleagues were HUGE supports to me, and as I learned I realized how much is very wrong in the mental health and eating disorders system. That inspired me to also take action by co-founding World Eating Disorders Acton Day in 2015, a global collective marking June 2 of each year for widespread information sharing and policy action at local levels. To date over 50 countries and 250 organizations, as well as 1000s of activists have come on board to participate each year.
My ‘coming out’ about my own and our family’s struggles with eating disorders, and the hopefulness that access to effective, evidence based treatment brings has been life changing for me. And has greatly supported my continued recovery and that of my children. There is much stigma around eating disorders; I felt a lot of shame and embarrassment as well. After all, my public persona is that of a successful professional woman, and it was uncomfortable to admit that indeed, I suffer from a psychological illness. The beauty of ‘coming out’ so openly has been that so many friends and colleagues have shared their stories with me. We are certainly not alone, and united my hope is that we can demand real change so that individuals (and their families) with eating disorders can get the attention, the resources and the treatment they need.
- Do not give up!
Never give up on your recovery. If nothing else, don’t give up just to spite the system! While I was actively suffering from an eating disorder, I don’t believe I ever gave up on the idea that I COULD recover. Even when suicidal. In fact, that inspired me to finally get professional help – as there is nothing so scary as having unwanted thoughts about self-harm. The first experience I had with a psychiatrist was profound. He told me that people like me would ‘never recover’. One of the positive sides of having certain genetic makeup is that people with eating disorders tend to also be creative, talented, intelligent and they definitely are not wilting flowers! I recall very clearly thinking “I’ll show you”. One of my inspirations and good friend, June Alexander, has written openly and prolifically about ‘recovery at any age’, as she describes recovery after age 50. If you are reading this, odds are you are not a young child, and you might be suffering. Don’t give up. There is effective treatment, and it is possible to live a life free of eating disorders – completely free to choose and live the way you desire. We in the activist community will often relate treatment of eating disorders to that of other illnesses. If you had cancer, or hypertension or another physical illness, you would expect and demand the best possible care based on the best evidence around. That’s what we need to do for eating disorders. For us, for the next generation, and the next.
About the author:
Amy Cunningham is a person who has been affected by an eating disorder personally and is the mother of five fabulous children, two of whom developed eating disorders. She has worked in Africa for the past 20 years leading efforts to fight HIV, and is most recently serving at the US Embassy in Kampala, Uganda, as the Country Coordinator for the President’s Emergency Plan for AIDS Relief (PEPFAR). She is co-founder of International Eating Disorders Action, co-founder and Chair of the World Eating Disorders Action Day Steering committee, and has been active in the Academy for Eating Disorders on several committees. She holds a Master’s in Public Health, a Master’s in Business Administration, and as part of efforts to contribute to the field of eating disorders is currently undertaking a Master’s in Science in Neuroscience and Psychology.
Arnold, C. (2013). Decoding anorexia: how breakthroughs in science offer hope for eating disorders. New York, NY: Routledge.
Brown, H. (2013). Brave girl eating: the inspirational true story of one family’s battle with anorexia. London: Piatkus.
Bulik, C. M., Blake, L., & Austin, J. (2019). Genetics of Eating Disorders. Psychiatric Clinics of North America, 42(1), 59–73. doi: 10.1016/j.psc.2018.10.007
Hebebrand, J., & Albayrak, Ö. (2012). Leptin treatment of patients with anorexia nervosa? The urgent need for initiation of clinical studies. European Child & Adolescent Psychiatry, 21(2), 63–66. doi: 10.1007/s00787-012-0243-3
Lock, J., & Grange, D. L. (2005). Family-based treatment of eating disorders. International Journal of Eating Disorders, 37(S1). doi: 10.1002/eat.20122