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Dreaming of Being Special

The meaning of "special" took on an almost life-or-death connotation for me.

Many little girls dream of being special. They dress up as princesses wearing sparkly tiaras on their heads or pretend they are glamorous movie stars, recognized wherever they go by crowds of adoring fans.

As these little girls mature into adolescents and young women, they outgrow these fantasies and find meaning in their lives and their place in the world through their families, personal relationships, careers, and in pursuit of their passions. As women, they do not depend on notoriety and recognition by strangers.

As a little girl, I too had dreams of being special. Only I did not outgrow them. The meaning of "special" took on an almost life-or-death connotation for me. The dream became an inescapable nightmare.

I was not aware of my need to feel special while in grammar or high school; instead, that's where I channeled this unconscious need into excelling academically and graduating near the top of my class. But then, I went to a college where all the students did well in high school. How would I stand out
among all of these multi-talented super-achievers? How would I feel special?

My self-starvation, which began as a way for me to express anger, anxiety, and ambivalence about separation and individuation, soon took on another role. It became a way for me to feel special and stand out among my classmates. In their freshman year at college, female students are warned against gaining the "freshmen 10." I would be special by losing the freshmen 10 and even more. If I could not stand out with my intelligence and intellect, I would stand out with my body. No matter how much weight I lost, each morning I told myself one more pound; just one more pound. Surely then, I will be satisfied.

This did not happen. This insatiable need to lose weight took over my life. Between running, swimming, classes, and obsessing about how little I could manage to eat, there was little time left to excel at anything else. I finished college and graduate school. Yet as I remember it now, I was often distracted by the demands and rigidity of the anorexia. How many laps could I fit in today? How many miles could I run before it grew dark? I was an expert at starving myself. I could do it better than everyone else. I might not earn straight "A's" in my classes, but I excelled at deprivation.

The more my life was ruled by the illness, the more I clung to it for dear life—even while it was eating me alive. It became my entire life, replacing meaningful relationships and a fulfilling career.

After I earned my Master's degree, I worked at a prestigious hospital and excelled in this position, earning merit awards for my dedication and work with clients. I became a faculty member of the medical school. For the long hours I was there, I was able to focus solely on the demands and responsibilities of my job. I compartmentalized my life. It was divided into two. There was work and there was my anorexia. There was nothing and no one else.

I thought that I could keep the two compartments separate. One would not affect the other. Eventually, this became impossible. My extreme weight loss, toothpick-like arms, protruding collar bones, and sunken cheeks became noticeable to my colleagues and my clients. When clients began to worry about me, my effectiveness and judgment were questioned. I was forced to leave my job and lost my faculty position.

At this point, one might think that I would feel angry, sad, or embarrassed. I do not remember feeling any of these emotions. I said to myself, "At least I have my anorexia." My career and all the accolades I received did not make me feel special; my illness did. (I may also have been feeling the physiological effects of the anorexic "high" which can result from extreme starvation.) My illness, not my career, formed my identity. It was who I was and it felt like a security blanket. I had built my existence on what was essentially a prison, around maintaining a cadaverous body.

My peers had high-powered careers, husbands, and children. They were traveling, decorating their first homes, and buying vacation homes. Yes, their lives were probably complicated and stressful, but they were richly textured, fulfilling, and hopefully meaningful. I did not have any of these things, but I repeated to myself, "At least I have my anorexia." I wore it like a merit badge. It was my all-encompassing, all-consuming career. It was my claim to fame.

I measured my success or failure by the numbers on the scale. The number was my identity and each morning it set the tone for my entire day. When my weight dropped, I felt a sense of accomplishment, maybe like a lawyer winning a case or a banker making a deal.

The illness also served as a distraction. If I focused on my pursuit of thinness, then I had no time for thinking about what I was missing, about the world and my peers going on without me. I had no time to connect to my longings for connection and meaning.

The anorexia isolated me. Its rigid demands did not permit any other pursuits or relationships. I was forced to rely on the illness for these things. It became an inescapable cycle. The more I felt a sense of accomplishment and meaning from the anorexia, the more I depended on it. The stronger it grew, the more isolated I became.

Even with inpatient treatment, intensive psychotherapy, and biweekly meetings with a nutritionist, I clung to the anorexia as it clung to me. I knew all the underlying reasons for the illness. I was able to analyze myself inside and out, backwards and forwards, but I could not bear to wrest myself from its grip. I believed the illness defined me; without it, I would not be special.

In addition to psychotherapy, I sought help from a psychologist, Ann, who used cognitive behavioral therapy (CBT) to treat sufferers of eating disorders. CBT had been used for many years to treat depression. At that time, it was new in the treatment of anorexia and bulimia. I went to see Ann with high hopes and expectations. Before even stepping into her office, I convinced myself that she held the key to my recovery. In our first meeting, she explained to me that CBT had been proven effective in the treatment of bulimia and for helping those with anorexia to maintain a healthy weight once they had reached it. It had not been effective in helping anorexics to gain weight. Therefore Ann was doubtful about her ability to help me with CBT.

I felt determined. I was not going to give in to Ann's doubts. I persuaded her that I was not the "typical" anorexic. I was special. I would be the one to prove that CBT could help anorexics to gain weight. Apprehensively, Ann agreed to try CBT under the condition that I adhere to a clearly defined weight gain schedule. Together, we set up weight goals and dates by which I had to meet the weight. If after a trial period of several months I could not meet these goals, then we agreed that we would not continue our work together.

At first, I was a model patient. I diligently completed my daily worksheets, planned menus with a nutritionist, and achieved my weight goals. I was succeeding and I felt special. I was even interviewed for a television news segment on CBT with anorexia. I was a "star."

I was so busy doing my daily homework, planning my meals, and obsessing about reaching my weekly weight goals that I did not think about what it would mean to reach a healthy weight, thereby relinquishing what I thought made me special. Ann warned me that gaining the first half of the weight would not be as difficult as gaining the last half. I did not believe her.

She was right. After I gained the first half of the total weight, my fear about giving up my illness and my specialness boiled over and I began to lose and gain the same few pounds over and over again. As per our agreement, I had to end CBT.

I kept the weight that I gained in CBT but I continued to gain and lose the same extra pounds. I felt like a mouse going round and round on a wheel in its cage, running the same circle over and over again, going nowhere, even though it is using up all its energy.

In spite of this inertia, I felt like I was doing something. It took a great deal of effort and planning to keep running in place. Each time I lost a few pounds, I would promise myself that this time I would gain them back and not lose them again. Then I would panic only to starve them off once more.

My life was at a standstill. I felt like I was watching the world go on without me, staring through a window with my nose pressed up against the glass, on the outside looking in. I began to express a range of emotions in my ongoing therapy: frustration, jealousy, fear, and anxiety. I yearned to be part of the world and I felt jealous of my peers, longing for relationships and something more meaningful than gaining and losing weight. Simultaneously, I panicked. Who would I be without my anorexia? How would I feel special? I knew the illness had long outlived whatever purpose I told myself it had.

My intellect and understanding of the underlying causes of my anorexia were not helping me to deal with the emotions, such as anxiety and fear, from which I was trying to flee.

It did not matter that my therapist, Diane, explained that I was more than my illness. I did not believe her. I could not accept this. It was an intellectual construct, not an experiential one. I had never experienced adulthood without anorexia.

Diane and I began to work in an affect-oriented and mind-body-focused approach. She asked me to not just use my intellect but to slow myself down and tune in to how I was feeling. What signals was my body giving off? In what part of my body did I feel anxiety? How did I know I felt happy? Where in my body did I feel it? My treatment became not just an intellectual one, but one in which I felt more whole, more connected to my body, heart, and mind.

Diane also questioned my definition of the word "special." Sitting across the room from her I said," Having anorexia makes me feel special. Without it, I will just be average. I don't want to be just average, like everyone else."

"What do you mean by special?" Diane probed.

"Standing out from everyone else, being different," I replied. I saw it as something positive and distinguished; it gave me cache.

Further challenging me, Diane asked, "How does being emaciated make you special? What is so special about this? Think about how we often use the word ‘special.' We say ‘Special Olympics' or ‘special needs,' referring to groups of individuals who are challenged in some way. We do not necessarily use the word to describe something positive, desirable, or enviable, someone we are attracted to or wish to emulate."

I knew Diane was right, yet I did not know how to respond to her. Doubt began to creep in. My specialness was alienating people. It isolated me and I felt lonely. I felt empty physiologically and emotionally as my illness had starved me in both ways. Deep down in my heart, I knew the anorexia was not meaningful or fulfilling. I felt hollow and empty inside. Maybe, just maybe, my illness did not make me special in a good way. It had been a lie I fed myself.

Diane then proposed a different track. As long as I did not lose any weight, we would put the weight to the side temporarily. "It is no longer acceptable to wait to start living your life," she declared. "You have been playing with the same few pounds for many years, just waiting to have a life. There is no reason you cannot begin to expand your life now, to experience for yourself that you are more than your illness."

This idea of not feeling like I was tethered to the scale was both exciting and anxiety-provoking. I was used to running away from the anxiety and escaping through the anorexia. If I was not a captive of the scale, I would have to feel the feelings.

Diane helped me to learn to tolerate the excitement and the anxiety. She sat with me and helped me to see that I could feel excited and anxious at the same time. I began to realize that anxiety was not necessarily a negative emotion and something to run from. Without the issue of weight consuming so much time, I began to think about what might truly be meaningful to me. What did I feel passionate about? Where in my body was this feeling? Was it in my heart or in the pit of my stomach?

While reading through old journals, I was reminded of the inadequacy of some of my treatments and the myths and misinformation about eating disorders that I had come up against. I remembered several times during inpatient treatment when clinicians lumped all patients with eating disorders into the same box filled with all sorts of misconceptions. I reread one journal entry when I was put in isolation, falsely accused of secretly exercising because I had not gained weight overnight.

I also felt frustrated that all the blame for eating disorders was being placed on the media and its unrealistic depictions of female shapes and body sizes. I knew that eating disorders are extremely complex illnesses and the media is one contributing factor, not the sole one. My excitement and passion grew as I thought about creating a program where I could educate teachers, parents, mental health professionals, and adolescents about eating disorders. I wanted to help others have a more complete picture of anorexia and bulimia and to decrease the stigma surrounding them.

I thought about how I could create such a program. How should I approach this complex topic? How much of my own experience would I divulge? How could I draw on my own experience and still maintain a professional distance? How comfortable with this was I? How much focus would I put on the cultural factors? How might an adolescent talk to a peer who she thought might have an eating disorder? How could I discuss the family contributions without blaming the parents? I also wanted to stress the importance of having family members be part of the treatment process. It was important to me to help educators and mental health professionals to look at eating disorder sufferers as individuals, not solely as categories with cookie-cutter treatment.

I created the program and designed the literature. Full of excitement, I sent information to approximately 30 schools and organizations. I assumed I would need to follow up on this, but I was not prepared for the frustration that followed. Every school had a different person who handled outside speakers and mental health concerns. Sometimes my information got to the right person and often it got lost and I had to resend it. Some places wanted it emailed and others wanted it by postal mail. Some schools never returned my repeated calls. I had to learn not to take this personally.

After about six weeks of no success, I walked into Diane's office discouraged and ready to give up, feeling like all my efforts were wasted. I could hear the anorexia shouting, "Just give up. This will never work out. You will never escape from this illness."

As Diane and I talked about it, I saw that this would have been an easy way out, one I was all too familiar with. She encouraged me to tune into the passion that burned in my heart and in the pit of my stomach—to the part of me that knew what I had to say was valuable and important for others to hear. I stuck with it. I was tenacious and persistent—two adjectives I learned to embrace and embody. Within two months, several schools called me and asked me to speak.

The first time I led the group to a class of 14-year-old girls, I felt such a "high." It was not the anorexic euphoria I had felt from starvation. When interacting with the students, I saw their interest and quest for information. They asked thoughtful questions which generated stimulating discussions. The feeling was so much more meaningful and fulfilling than any feeling I had when I starved myself or lost a pound. This was special! This was real, unlike the fantasies of a little girl wearing a tiara on her head.

From this perspective, I realize that in the throes of the anorexia, I could not have imagined the excitement and passion I feel when I speak to educators, clinicians, and adolescents about eating disorders. It was not enough to have other people tell me that I was more than my anorexia and that it was not my illness that made me special. I had to experience it for myself. I see now that special is a feeling of pride and dignity that comes from within.

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