Letting Go of Secrets in Eating Disorder Recovery
By Mark Warren, MD, MPH, FAED
If you have ever had an eating disorder, regardless of what kind it was, it is an amazing thing to feel recovered. If, like me, you suffered before the illness was recognized as an illness, never had adequate treatment, and knew that eating disorders were regarded as a social disease, then finding yourself healthy is likely a fantastic relief.
I was probably 10 years into my anorexia before I knew I had it. At that point, I was already on a recovery path. Perhaps this is common. Naturally, I wanted to know what had happened to me: What was my story, how did I get sick, and how did I get better? But I put these questions aside and closed down this part of myself because, of course, why would I not? I was ashamed of my illness, I thought I had caused it, I still had some very odd thoughts about food and body, and I never had any therapy to address it.
I did not really think about my narrative for recovery until I was a well-established professional who was active in the eating disorder field. At that point, I was providing support to those in recovery, but I was also finding support from them.
I was approached by a colleague at a conference who wanted me to talk about being a professional with an eating disorder. My initial response was no. I didn’t want to be that guy with the eating disorder. After all, no other male professional at the Academy for Eating Disorders had talked about their personal history. But I did choose to give that talk, and I did become that guy. I’m glad I did.
In creating my initial presentation to share my story around 15 years ago, I knew this was an opportunity to clarify a narrative for myself of my experience with anorexia. This narrative, almost by definition, was focused on what it was like to be a man with an eating disorder at a time when men were not believed to have eating disorders. My narrative focused on triggers, my childhood, the media, the impact of running cross-country, an increase in eating disorder behaviors, weight loss, and the development of behaviors, thoughts, and feelings related to the eating disorder. In the end, my eating disorder behaviors became so severe that they ultimately forced me to discontinue school to pursue some form of treatment.
At this point, I didn’t know I had an eating disorder. All I knew was that I was having disturbing thoughts and I could not function. I also did not know how to get better. So, the second part of my narrative focused on what happened next—meeting my wife. When I met my wife, I was struggling with my eating disorder and she was a chef who loved me despite this. She made a condition of our relationship that I had to eat what she cooked. So she was then and still is the star of my story because I began to understand my recovery through that relationship. I understand now that I was involved in some type of family-based treatment, where through the power of love and connection, I was able to move into a place of weight restoration. This, of course, was very hard, and my behavior was challenging at times, but together through this, we bonded.
I returned to medical school, but following my internship, I dropped out again from medical training because even though my weight was restored, I was not happy. My wife and I decided to spend a couple of years living on a farm with friends, where I learned more about my eating. I learned how to be comfortable eating with others; I also learned a lot about shame, because I was spending all of my time with others. In particular, I got very in touch with the shame I carried about my body.
Of course, this understanding extended into the rest of my life, compelling me to seek therapy about 13 years after my disorder began. I did therapy for many years, primarily Gestalt therapy focused on sensation and awareness.
This narrative is what I told myself, and it became essential to who I was in the eating disorder field. For over 10 years, I spoke to many people about this, did a keynote at an Academy for Eating Disorders meeting, and went around the country discussing my illness and recovery narrative. So, to a fairly large degree, that narrative started to define who I was. Then, one night a few years ago, at a Renfrew conference, a distinguished professional casually mentioned that she had been exploring the potential for eating disorder recovery using hallucinogenic drugs. I was seized by shame in that moment because this was something that was true for me that I had chosen to delete from my narrative.
I spontaneously shared this part of my history with her and another friend. Between 1982 and 1985, I was doing my residency at Harvard, and I was able to join an MDMA study on the use of the psychedelic as a therapeutic agent, which was fortunately legal at that time. During my experience participating in this study and utilizing MDMA, I experienced a dissolving of body shame and an ability for me to have full contact with my own skin, which was something I never had before.
My friend then asked how someone could experience getting and using a hallucinogenic drug. I was suddenly thrown back in time to when I was 17 years old and took LSD (by mistake) for the first time. I had an experience that was out of an antidrug pamphlet from 1966. I basically had an eating disorder horror movie happen to me. I hallucinated smiles surrounding me, these smiles turning into teeth, these teeth eating me, me turning to dust, and a wind coming in and blowing the dust away. This hallucination happened to me repetitively for about six painful hours. Obviously, I did not mention this in my historical talk, either.
As I took all of this in over a period of weeks to months, I realized that my entire narrative was probably wrong. What I started to understand was that the bad acid trip was a significant trigger for my eating disorder. It wasn’t an expression of someone already ill, because my behaviors didn’t really start until after that. I had taken the LSD by mistake and, therefore, without the appropriate mind-set, setting, or support. In fact, it was given to me by a 17-year-old girl who was more experienced at everything than me. What’s worse is that we got separated that night, so I ended up freaking out all by myself. I had to then tell my parents what had happened, because I was losing my mind. They, of course, were devastated. I would guess that the next day is when my eating disorder behaviors really started. I began running every day, weighing myself every hour, and truly trying to starve myself.
My whole life I have felt that not discussing these experiences with drugs meant I was wise, because if you talk about such drugs, you can lose your credibility and face other consequences. Plus, who attends conferences and talks about drugs? But the truth is, I was carrying a secret. What I called wisdom at the time was just another secret
The other side of this story is that the MDMA study I participated in is what actually started my healing. This experience is what got me into therapy, because I knew there had to be a way to feel in control of myself without shame and without having to take a drug. It was that experience and the resulting therapy that allowed me to move through recovery.
Over the course of the months that followed these realizations, I could barely get through an hour without rewriting my entire life history in my head. It was an incredibly exciting period where an unbelievable amount of disconnected experiences started coming together. Things started making sense—why I liked or disliked things, what happened—it all made more sense because I had a new narrative that was no longer restricted by the secrets.
I tell this story now because narratives are incredibly important. My original narrative was helpful yet dangerous for me. It propelled me in some ways, but it meant I never truly understood myself and why I became the person I am. It is humbling to realize, at my age, that I didn’t really know my own history. And of course, this raised the question: Are there other things I haven’t considered? The answer to that question is probably yes, but I don’t know for sure. I do know that I have to be open to the possibility.
Having talked to other recovered professionals, I don’t think my experience is all that unusual. I think most people do have a narrative about recovery. Most people’s shared narrative follows the arc from illness to wellness, and almost no one’s narrative involves sex or drugs. These are strange things to delete from the story of an illness that affects adolescents and teens. The shame I carried around was something that is so natural for a 17-year-old, and yet, it was so blinding.
But, of course, to talk about these issues is to put one’s career at risk. This was true for many people—many women in the 1990s who started sharing their histories suffered tremendous negative career consequences. It is really only lately that some of the fear of serious repercussions has lessened. And only for some of us. Professionals—particularly those in recovery—are going to hold secrets. A common secret for many in recovery is that if food and body image was the focus of your life for 10-plus years, it’s unlikely that these focal points will go away quickly. For some, they will never completely go away. For me, to be in recovery is to manage self-judgment so that it feels like it’s no longer such a big deal. I can still be recovered even though this thing that I cared about so much is still visible. One of the joys of recovery is that perfection, including the perfect recovery, is not needed. This trait can be used for better ends.
We also know that if you had an eating disorder, you probably had it as an adolescent. One’s eating disorder secrets and one’s adolescent secrets may be all tied together. Another secret of recovery is that we don’t know a lot of things for certain about how we got sick and how we got better.
We often talk about how eating disorders are biological illnesses, but anyone who has had an eating disorder has also likely experienced a lot of shame and self-doubt. It’s common to believe this isn’t really true—that the eating disorder is not a biological illness. We all ask ourselves, “What could I have done differently?”
Research tells us that eating disorders come with certain traits. Those traits will not just go away. Do we want to tell our stories and talk about these traits? Or does this feel dangerous? Until we are done keeping secrets, it will be hard to not hold these questions in our minds. Am I still afraid of weight gain? Are social situations triggering for me? Was my eating disorder normal? Do I still feel shame? Do I still focus on food, body, size, and shape? What exactly do I mean by recovered? Did I really have a biological disease? Not everyone has these questions, but many people do.
On the other hand, we have to also gauge the cost of being honest and the cost of keeping secrets. Will keeping secrets make us less able to help others? Will being honest harm our career and, therefore, our life more broadly? But I think this is hard to do. Yet, it is good to know that to tell our full story, it will have to include taboo subjects (like sex and drugs) in order to keep moving forward as a field and continue to destigmatize all those who suffer.
Letting go of secrets creates a sense of freedom and possibility. I have received so much more than I expected to get. I can talk about many more things than I thought would ever be possible and feel things more deeply than ever. Letting go of secrets has made me grateful.
So here are a few more secrets that I often forget to share. Having an eating disorder will not make you unloved or unlovable. Having an eating disorder will not destroy your life. The world of recovery that those with eating disorders have created is quite beautiful. To be in recovery is to be part of a counter-narrative in our culture that idolizes thinness. Some of my best friends have had eating disorders, and our relationships have positively affected my life. The eating disorder recovery community is supportive and powerful. In spite of my struggles and hardships, I am a very lucky man. I hope everyone can experience some form of recovery in their life.
About the author:
Mark Warren, MD, MPH, FAED, is the Chief Medical Officer of the Emily Program, a multistate Eating Disorder Treatment System focused on bringing the most advanced, evidenced based care to clients who are treated in a community of recovery. A graduate of the Johns Hopkins University Medical School, he completed his residency at Harvard Medical School. He is on Faculty at Case Medical School and teaches at University Hospitals of Cleveland and The Cleveland Clinic Foundation. He is a past chair of the Department of Psychiatry at Case Western University’s Mt Sinai Hospital. He serves on the Visiting Committee of Case Western’s Francis Payne Bolton School of Nursing.
Dr. Warren is a Distinguished Fellow of the American Psychiatric Association and a Fellow of the Academy of Eating Disorders. He is a two-time recipient of the Exemplary Psychiatrist Award of the National Alliance for the Mentally Ill, and a winner of the Woodruff Award. He has published and spoken extensively on Males and Eating Disorders, Professionals and Recovery and DBT and FBT in the treatment of eating disorders.
Dr. Warren was a founding member and co-chair of the Academy of Eating Disorders Medical Care Standards Committee and serves on the FEAST Medical Advisory Board.