Suzanne: Almost 10 years ago now, our then-17 year old daughter was diagnosed with anorexia nervosa. This was a very dark and confusing period for our entire family. We are among the fortunate minority whose daughter was successfully treated, has recovered and is well and thriving. A few years afterwards, she and I together published for a nursing journal an account of our journey- actually 2 side-by-side reflections, as our perspectives are quite different.
We have our respective reasons for sharing this very personal story. From my vantage point as mother and nurse, I would like other mothers and other healthcare professionals to benefit from what I learned. The evolution from functional adolescent angst to a rapidly down-spiraling pathological state was insidious. The early red flags were neither recognized nor clearly identified, certainly by me, but they were also missed or minimized by other healthcare providers. We had many challenges accessing high-quality mental health services with a coordinated approach.
It is also important for me to share the message that eating disorders may not manifest themselves in the way that we (as mothers or as healthcare providers) might expect. Anorexia nervosa does not necessarily afflict young women who are fashion-conscious or appearance-obsessed. Families wrestling with mental health issues need to continuously advocate to have their needs met. And above all, it is not just about the food. Eating disorders are serious mental health problems that require all the skills a multi-specialty team can provide.
Colleen: I don’t think I ever realized what anorexia was. I knew about something called an eating disorder that I thought girls got when they wanted to be really skinny. From the perspective of a person who successfully battled anorexia nervosa, I could not agree more that eating disorders really aren’t about food at all. Anorexia nervosa is not about a quest for thinness, but is instead about a desire for control. After my experience, I now know that an eating disorder is a psychological disorder whereby the mind changes its perception of what is normal. From this disrupted thinking, an eating disorder can take root and grow. Behaviors like eating healthy and exercising that are considered safe and positive take on an extreme form, becoming self-destructive and dangerous. Eating disorders, perhaps ironically, typically occur in those who are strong-willed, driven, and ambitious.
Suzanne: As the disease progressed, she would eat only after we had all gone to bed for the night. There were signs that she ate rice cakes, pretzels, and hard candy. The less food she consumed and the hungrier she got, the more difficult she was to get along with. After we went to bed for the night, I could hear her downstairs in the kitchen cupboards. The nights were a hard time for her. I ached to relieve her pain and loneliness, but it seemed impossible for me to reach her. She waited for us to go to bed, because this was the only time that she would eat. This “eating anxiety” is common in those with anorexia nervosa.
Colleen: For me, it’s hard to pinpoint the time when my relationship with food took such a self destructive turn. I had always avoided rich or fatty fried foods because of the way that they made me feel. When my physical fitness through swimming became very important, my nutrition and eating habits gradually accompanied it. Like being able to decide how much and how often I exercised, I liked being in control of what went into my body, and this eventually translated into being able to control the numbers on the scale. I decided that I needed to be not only the most physically fit on my high school team and the most successful academically, but also the thinnest among my peers. When I first started the downward spiral into this dark world, I never once thought, “I am developing an eating disorder.” It isn’t about how much you weigh, though it may start out that way. Eating became like a game to me and the challenge was how little I could eat. All I cared about was being in control and winning the game. My stomach burned because it was empty and that burning meant that I was winning. This game consumed my life, but as I continued to lose more weight, I was winning the game, reaching my goals. People who tried to help me were people that I could only see as enemies getting in the way of my goals.
Looking back now, I think the scariest point during my time with anorexia was the point when I began to define myself by my disorder. My eating became the way that I could distinguish myself from my peers. Because I deteriorated so much physically and mentally, I lost the will or desire to maintain friendships, to maintain a job, or to be motivated to pursue academics, all things that were previously very important to me. My eating (or lack thereof) routine began to take over my life and anorexia quickly became my identity, at least in my eyes. I no longer felt that I could call myself a swimmer, a student, a friend, or even a sister or a daughter because I felt unable and unwilling to occupy those roles in my new mental and physical state. I had become a girl with anorexia. I did things I never would have done before to protect my new identity: I lied to my family; I tried to be alone as much as I could. I think that this is what made the prospect of recovery so challenging: if I were to change my eating habits to be “normal” or “typical,” how would I identify myself? As I told my Mom when she confronted me about the need for treatment, “Mom, you don’t understand. I am not sick. This is just who I am now. This is how I want to be. I don’t want to change.”
The abrupt and dramatic point when my recovery began is probably not one that most individuals with anorexia can identify with. It had been about four months since I had eaten anything in front of my mom when we were together in the car after one of my many doctors’ appointments. The psychologist was helping my mom work with the health insurance company to approve me being admitted to an inpatient clinic because they said I was not getting better with the current treatment. Everyone was worried because I was losing weight very quickly.
I had previously lived in fear of what would happen if I gave in to eating: I was scared that I would want to punish myself. On this day, for some reason that is really still unclear, I somewhat abruptly let go of my fear and I let go of the anorexic identity. In one split second in the car with my mom, I wasn’t scared or afraid or feeling out of control. Incredibly, that day at lunch with my mom, I ate a whole sandwich, a bag of chips, and some of my mom’s soup. At lunch that day, I left my skinny, sad body at the table. I was suddenly relieved of the burdensome and overbearing identity I had come to hold on to so strongly. I found myself looking at life in a new way: each day was not going to be something I had to suffer through but rather something that I could live for and be happy about. After that lunch, I never looked back to the distorted perception of myself that I had carried so devoutly for several months. I never regretted saying goodbye to the thin, tortured, and confused person that I left at the table that day. Sometimes she tries to come back and take me over, but I’m strong. I’m tough. And I won’t ever let her in.
Colleen S. Hughes, M.S.
Suzanne Hughes M.S.N., R.N., Director of Population Health for Summa Health System
Note to readers: Tomorrow’s Flourish post about anorexia will be from a psychologist’s point of view and will discuss the signs, symptoms, treatment options and other clinical aspects of the disease.