Life Beyond Your Eating Disorder

Over the years I’d been to see many different therapists on several occasions, but until then I’d always told the therapist exactly what I knew he or she wanted to hear, and that was it. I simply wasn’t ready to hear what the therapist had to say to me. I wasn’t ready and willing to see a life without my eating disorder. I’d go to a nutritionist, take the meal plan I was given and throw it in the nearest trash can before I even got home. In other words, I manipulated everyone and sabotaged myself in order to maintain my eating disorder, which felt safe to me. The thought of giving up the eating disorder and going into an unknown place was much more frightening than maintaining the familiar, miserable as it was, and suffering the consequences.

I was still thinking in black-and-white, all or nothing. I was going to do recovery the same way I’d approached anorexia, wholly and completely. I slipped, as we all do, and boy, did I ever beat myself up.

But this was different. Now I had a nutritionist, a therapist and an entire treatment team, and I was truly ready to take back my life and get better. For the first time in my life I began to understand the feelings that underlay my eating disorder: why I hated myself so much, why I felt so undeserving, why I felt that everything had to be perfect. At first it was very scary to feel again after avoiding those feelings for so long. I didn’t like it one bit, but once I began to understand that I didn’t need to be perfect, that recovery wasn’t going to be perfect, I started to breathe again. It wasn’t easy, and I could not have done it if I hadn’t already come to the realization that I wanted to get better and was ready to do whatever was necessary for me to get healthy. Up to that point, I honestly hadn’t been willing; I just didn’t want to. No one—including me—could love me enough for me to be encouraged to get better. I’d devoted ten years of my life to my eating disorder, and now, for the first time, I wanted to live, laugh and feel good about myself again. I even wanted to go on a date. At the time, I hated my body so much that I was literally avoiding any kind of contact at all with the opposite sex. Instead of checking out the guys, I spent my time sizing up other women and comparing them to myself—and, not surprising, I was always the one who came up short. I felt as if someone had taken away my soul, and now I wanted it back.

Never once in my entire life had I awakened in the morning, looked out the window in sunny West Palm Beach and said, “Today I’m going to become an anorexic.”

I started to get better, but things didn’t immediately become all better. In fact, my recovery process was far from easy, predictable or perfect. That was yet another hugely important realization for me. Initially, I was still thinking in black-and-white, all or nothing. I was going to do recovery the same way I’d approached anorexia, wholly and completely. I’d decided to get better and, therefore, I would be completely better immediately. I would be the Queen of Recovery—at least that was what I thought. Of course, it didn’t happen that way; it simply isn’t possible. I slipped, as we all do, and binged—and boy, did I ever beat myself up afterward. As was typical for me, I used my slipup as an excuse to keep telling myself that obviously I wasn’t good enough to do even recovery correctly.

Slowly, however, my journey to recovery was progressing and I was gradually getting healthier, which meant that I was also seeing things more clearly—at least some of the time. Part of that clarity involved coming to the realization that I wasn’t going to be able to counsel people with eating disorders in a one-on-one therapeutic environment while I was still recovering myself. That relationship would simply be too intense and triggering for me, and I didn’t think I’d be able to maintain the proper therapeutic distance. In my heart, I knew I wanted to speak publicly about eating disorders because, as I was struggling with my own recovery, I really didn’t have anywhere or anyone to go to for support. It was completely up to me to hold myself accountable and go to my treatment sessions. I had a wonderful family and wonderful friends, but none of them really knew how to provide the support I so desperately needed. How could they have known? I was living by myself in Orlando, I didn’t confide in them, and therefore they had no idea what I was really going through.

There were several times when I could have easily lost my battle with my eating disorder, but I hadn’t.

I didn’t want anyone else to have to walk that path alone. I didn’t want them to think that they couldn’t get better. I wanted to walk beside them when they were going through the same thing I had so that they would know they were not alone. During the entire time I was in treatment, I had never known a single person who got better. I was white-knuckling it the entire way, and I wanted to make it different for others. I loved the work I was doing at IAEDP, but I wanted to get out there and bring education and awareness to boys and girls who were the “me” I’d been in seventh grade. I wanted to tell them that I knew what they were thinking—that they thought they were in control, that they could just lose some weight and then stop. I’d walked through that door, so I knew that once it slammed shut behind them, they’d have no way to get out. Never once in my entire life had I awakened in the morning, looked out the window in sunny West Palm Beach and said, “Today I’m going to become an anorexic.” I wanted them to know that, and I wanted them to understand that if they walked through the same door I had, it might be the same for them.

During that first year of recovering, I remember talking to a friend on the telephone and laughing out loud. My friend started to cry and told me that she couldn’t remember the last time she’d actually heard me laugh.

Once I’d made the decision to focus on helping other people through education and advocacy, there was another phone call to my parents. I told them I’d decided not to go to graduate school, after all. Instead I was going to start my own nonprofit organization. I was starting to feel healthy; I knew I could do it, and I wanted to give back because I’d been given a second chance. There were several times when I could have easily lost my battle with my eating disorder, but I hadn’t. Now I couldn’t take my recovery for granted; I wanted to share what I’d seen and what I’d learned. I realize now that my parents had been assuming that as soon as I got better, I’d be going back to school. Needless to say, they were a bit shocked. My mother was supportive, but my father was very apprehensive. He really wanted me to follow the traditional educational route, the one he had always wanted and planned for me. In the end, however, they agreed to support me for a year—which at the age of twenty-one seemed like a lifetime to me.

I filed the incorporation papers for a nonprofit organization in October 2000, moved back home in December 2000 and in January 2001 opened the Alliance for Eating Disorders Awareness. I called all my friends, my family, all the people I knew from treatment and various therapists, and I asked them all to tell me: If they were the parent of a child with an eating disorder, or if they had a client with an eating disorder who needed support, what kind of organization and what kind of information would they want to have available to them?

Based on the information I received from friends, family and therapists, I decided that education was the place to start. I believed that sharing my story and promoting positive self-esteem were the way to go. To do that, I would go into schools, start talking to kids and tell them what I had found out during my struggles with my eating disorder. My first presentation was at a local private school in April 2001, and I was terrified. In my excitement about starting the organization, I’d forgotten that I’d failed speech class in college because I was afraid to speak in public. Put me on a stage to dance before an audience of thousands and I was fine, but public speaking was something else. Nevertheless, I prepared my talk, got up before a sea of high school students and shared my story. In the end, it was the best feeling I’d ever had in my entire life. I’d found my path and I knew it.

Now I can truly say I am recovered—recovery is definitely possible.

It’s now been nine years of an unbelievable journey. I remember the first time, during that first year of recovering, when I was talking to a friend on the telephone and laughing out loud. My friend started to cry and told me that she couldn’t remember the last time she’d actually heard me laugh. What an amazing day that was! I realized that, indeed, I could laugh again. And laughing feels really good!

If you’ve come this far with me, you’ve already gotten to the point where you are at least considering recovery. You’ve taken the first baby steps, and you’re probably scared. As much as we all want to get better, it’s frightening to give up something we know so well. When I was bingeing and restricting, I always knew exactly what to expect. I knew that if I did A, then B would happen. When I began my recovery, I had no idea what would happen, and for years I continued to tell people that I was recovering because I was still afraid to give up my eating disorder entirely. But now I can truly say I am recovered, and that recovery is definitely possible. Your path to health won’t be perfect or simple or straight any more than anyone else’s. In fact, it will be one of the hardest things you’ll ever have to do. But I can provide you with the tools I’ve acquired over many years to help you persevere through the highs and lows of recovery. Some of my tools will also become yours; others may not work for you. And you’ll probably be adding tools of your own. That’s the beauty of the recovery process: it is unique to each individual. There is no right or wrong way to recover.

Your path to health won’t be perfect or simple or straight. In fact, it will be one of the hardest things you’ll ever have to do. But I can help you persevere through the highs and lows.

There will surely be slipups, but it won’t always be so serious, either. We’re even going to have some good laughs along the way. And the one thing I can assure you is that recovery is more than worth it—it is without a doubt the best thing I’ve ever done for myself!

PROFILE IN RECOVERY: Allison’s Story

I first read Allison’s story in the newspaper the morning after she won the title of Miss Florida. I was immediately struck by how eloquently she spoke about her battle with bulimia: trying to live up to unrealistic standards, living life after her recovery and her passion for using her voice to create awareness and change. She used the platform her Miss Florida title provided to educate others and bring attention to how serious and widespread the problem of eating disorders really is. When her reign was over, she continued her outreach by creating her own nonprofit organization and traveling around the state speaking to students. I am deeply grateful that Allison has continued to use her voice throughout the years and that she now lives the life she imagined…eating-disorder free.

Ten years ago, my battle with bulimia was in full swing. My days were consumed by an illness I never expected or wanted in my life. When people think about eating disorders, they often think that they are a choice, but that simply isn’t true. Eating disorders are not choices; they are mental illnesses, and they are also the leading cause of death among all mental diseases.

Eating disorders are not choices; they are mental illnesses.

In order for you to completely understand why my eating disorder began, I think it is important for you to understand a little bit about my past. I grew up in a very competitive home. My mom was a former national champion baton twirler, and by the time I was five, I was well on my way to pursuing the same goal. From the very beginning, I was a complete perfectionist and put a lot of pressure on myself. From pushing myself in the gym to expecting straight As on my report card, I didn’t want to settle for anything less than the best.

One point I want to stress to you is that I didn’t wake up one day and decide I wanted to be a bulimic. I vividly remember when my eating disorder started. I’d had a bad day at the gym and was really upset. For some reason I got so worked up that I actually threw up. It just happened; but in that moment something was triggered in my mind that eventually led to a life consumed by an eating disorder and some very serious side effects.

I didn’t wake up one day and decide I wanted to be a bulimic.

For three years my eating disorder was my secret, but by the time I was a junior in high school, I physically could not deal with it anymore. I went to my parents for help, but they didn’t really know what to do. I became very angry with them for not being able to help me or give me what I needed, and at that point anorexia also came into the mix. By the time I started my senior year, my symptoms were very visible. I was extremely weak, I had lost half the hair on my head, I had broken blood vessels in my eyes, I had done damage to my esophagus from the bingeing and purging, I couldn’t digest food properly even if I wanted to, and I was at a dangerously low weight. By November, I knew I couldn’t live that way any longer. I went to my parents once again and at that point they took me to our family doctor, who diagnosed my eating disorder and told us that I would need to work with an outpatient treatment team. Together we found a psychologist, a psychiatrist and a nutritionist who would help me start to heal.

A major turning point in my recovery occurred when I left for the University of Florida the following fall. This was my opportunity to start my life over, but it also could have triggered my eating disorder again. I decided the best thing to do would be to surround myself with people who could help keep me strong and to get involved in groups that helped to prevent eating disorders. I volunteered at the student health-care center and started to tell my story. Interestingly, speaking out in public also helped me to help myself. I realized that by being open and honest about what I had been through, I was helping others who were either suffering or knew someone who was.

I realized that by being open and honest about what I had been through, I was helping others who were either suffering or knew someone who was.

At that point, I decided to start HOPE, Helping Other People Eat, which is now a 501(c)(3) nonprofit organization that works for the prevention and awareness of eating disorders.

I also wanted to give back to those organizations and groups that had helped me during my struggle. The National Eating Disorders Association provided a wealth of information not only for me but for my parents. Currently, my involvement with NEDA ranges from being a yearly NEDAwareness Week coordinator to serving as the inaugural chairwoman of the National Junior Board. I also lobby for insurance parity with the Eating Disorders Coalition on Capitol Hill and with the NEDA STAR Program in Florida, and I am an active supporter of the Alliance for Eating Disorders Awareness.

In 2006 I won the title of Miss Florida and went on to compete in the Miss America pageant. During my reign as Miss Florida, I traveled the state, educating all age groups about eating disorders. Over the last few years, I have spoken to more than forty thousand people about these illnesses and have made a commitment to continue speaking and reaching out for the rest of my life.

I truly believe that we go through things for a reason. Knowing how terrible it was for me to suffer from an eating disorder, I now live my life every day trying to prevent others from traveling down that path and helping those who are suffering to find the help they need.

Chapter Two

GIVE UP THE GUILT—AND RECLAIM YOUR POWER

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.

—ANAÏS NIN

IF YOU’RE ANYTHING LIKE ME—and the many, many people I’ve met giving presentations and in my support groups—you may have spent a lot of time beating yourself up and wondering how you could ever have allowed this to happen.

I honestly thought there was a perfect weight that would make me a perfect person.

In my case, there were fifteen young dancers in my class when we were told to lose weight. The others just lost a few pounds and then went on about their lives, while for me the need to lose just continued and continued and continued. Each time I got close to my weight goal, I raised the bar and moved the goal line back. I honestly thought there was a perfect weight that would make me a perfect person. And each time I reached a lower weight, I really believed that when I reached that next new lower number I’d be satisfied. I just chased that rabbit—the illusive, perfect me—down the rabbit hole and found myself in a totally strange world, one in which I actually didn’t have any control even though I had convinced myself that I was in complete control. And then, when I tried to climb out, it was like walking through a hall of mirrors; I couldn’t find the exit no matter how hard I tried.

I just chased that rabbit—the illusive, perfect me—down the rabbit hole and found myself in a totally strange world, one in which I actually didn’t have any control.

Even when I was in recovery, I still kept thinking that I should have been stronger, that I should never have let this happen. I should never have allowed myself to slide down into that hole. Why, why, why did it happen to me?

Genetics—At Least Part of the Answer

One of the most exciting and enlightening moments of my life came when I learned that research indicates there is a genetic component to eating disorders. Some people are born more vulnerable than others to developing an eating disorder, and various researchers have linked the problem to the disruption of serotonin levels in the brain. Serotonin is a neurotransmitter, a brain chemical whose functions include the regulation of both mood and appetite. Some researchers have theorized that increased serotonin levels may leave people in a perpetual state of anxiety, leading them to gain some sense of control by restricting food intake. Low serotonin levels, on the other hand, could lead to bingeing on foods high in carbohydrates, which would temporarily raise serotonin levels and elevate mood.

In a strange way it was extremely liberating for me to read the following statement made by Dr. Thomas R. Insel, director of the National Institute of Mental Health, in an October 5, 2006, letter to the chief executive officer of the National Eating Disorders Association:

Research tells us that anorexia nervosa is a brain disease with severe metabolic effects on the entire body. While the symptoms are behavioral, this illness has a biological core, with genetic components, changes in brain activity, and neural pathways currently under study.

While you might think it would be disturbing for me to learn that anorexia was a brain disease, it was actually validating to know that there was a biological explanation for my problem. And Dr. Insel didn’t leave me feeling powerless, because he went on to say that “most women with anorexia recover, usually following intensive psychological and medical care.” So, it is truly not your fault that you have an eating disorder. Even better, it is possible to recover—and you shouldn’t be expected to cure it all on your own.

Simply telling someone with an eating disorder to “just get over it and sit down and eat” is never going to work. What are you supposed to say to that? “Oh yeah, you’re right. For all those years I was struggling with anorexia the real problem was that I just forgot to eat, but now that you’ve reminded me I’ll remember. Thanks!” No! Initially, I’d actually thought it would be that easy. I thought I could just sit down, eat a meal and not restrict, binge or act out. But, of course, it wasn’t easy. It isn’t, and it’s not supposed to be. But now I have a valid, scientific explanation not only for why I’d developed an eating disorder but also for why recovery wasn’t so easy.

It is truly not your fault that you have an eating disorder. It is possible to recover—and you shouldn’t be expected to cure it all on your own.

Walter Kaye, MD, of the University of Pittsburgh Medical Center, working with an international group of doctors, has collected information from more than six hundred families in which two or more members had an eating disorder. In an article titled “Genetics Research: Why Is It Important to the Field of Eating Disorders?” Craig Johnson, PhD, director of the Eating Disorders Program at Laureate Psychiatric Clinic and Hospital in Tulsa, Oklahoma, states that these results may be nothing short of a breakthrough. They suggest that both anorexia and bulimia “are as heritable as other psychiatric illnesses such as schizophrenia, depression, anxiety and obsessive-compulsive disorders.” And other clinical studies have also supported this evidence. One, conducted at the University of North Carolina at Chapel Hill, reviewed information from more than thirty-one thousand people in the Swedish Twin Registry and determined that genetics is responsible for 56 percent of a person’s risk of developing an eating disorder—with environmental factors determining the rest.

As with almost all diseases and conditions, genetics may predispose us to being more susceptible, but our environment and lifestyle choices either increase or decrease our chances of actually getting the disease. According to Dr. Kaye, “We think genes load the gun by creating behavioral susceptibility, such as perfectionism or the drive for thinness. Environment then pulls the trigger” (Journal of the American Medical Association, Vol. 290, No. 11, Sept. 17, 2003). The problem, of course, is that if we know, for example, that we’re predisposed to developing high blood pressure, we can avoid eating salty foods. But we can’t remove ourselves from the world, and the world we live in is filled with messages and images that hold up thinness as a measure of perfection. All we can do is try to nurture our children’s self-esteem and help them to develop a healthy body image.

As I thought about Dr. Kaye’s words, I realized that when I started down my path to anorexia and bulimia, all I wanted to do was better myself, and I was in an environment that encouraged me to lose weight and be thin. I truly believed that if I lost weight I’d be a better dancer, and that was the most important thing in my life, the only thing I really cared about. So, not only my own perfectionism but also the environment in which I’d immersed myself were working together to put me at risk for developing an eating disorder.

When I ask members of my support groups whether there’s anyone else in their family with an eating disorder, I see a lot of people shaking their heads no. And then I ask, “Well, what about your aunt Suzy or uncle Bob, who will only eat particular foods, has peculiar eating habits or is exercising all the time?” and all of a sudden their eyes light up and hands go into the air.

Looking back on it now, I can see that not only eating disorders but also alcoholism, depression and anxiety run in my family. I remember being a little girl and visiting an aunt, my father’s sister, who worked for a large clothing store in Paris. She was petite and thin, and I recall her telling me that her secret to being skinny was to eat just one fast-food fish fillet sandwich a day. At the time, I didn’t think, Okay, I’m going to do that, but it did reinforce the idea that weight was an issue and that thinness was something to work for. And now, of course, I know that my aunt must have had some kind of eating disorder—or disordered eating—herself.

In addition to what I observed in my father’s family, my mother’s sisters have also struggled with poor body image and have always been extremely conscious of everything they ate. So, in fact, there were eating and body image issues on both sides of my family. For me, the genetic gun was definitely loaded and just waiting for the environmental circumstances that would pull the trigger. I really didn’t roll out of bed one morning and decide to be anorexic! And it’s important for your recovery to understand that neither did you.