The following piece was written by KC, the mother of one of our patients.
I heard the faint warning bell early but didn’t really want to believe it. When she got in the car after a trip visiting a friend and asked if I noticed that she had lost weight, when she started to eat “healthy,” when she became “lactose intolerant” (really? since when?) and couldn’t eat ice cream, when chicken repulsed her– all of these behaviors I noticed. The running and working out increased but it was under the guise of getting ready for fall practices. I started to get nervous, but I kept waiting for her to get tired of the running, to get tired of reading labels. This was my daughter who never considered her size– who would happily try on any clothes– and only knew her weight when she went to the pediatrician. It was not until she told me her weight one morning, at which point I said, “Enough!” and then a week later told me, with what I thought at the time was a rather smug smile, that she had dropped another four pounds that I heard the cathedral bells tolling loud and clear.
I spent the next six weeks taking her to the pediatrician in the practice who was the most knowledgeable about eating disorders– mistake #1– I should have taken her directly to a specialist. She also began therapy with a psychologist who was finishing up her doctorate and had “some experience” with eating disorders– mistake #2. Being referred to Joanne as her nutritionist was the only step she made towards recovery in those first six weeks. I remember clearly my daughter’s initial visit to Joanne because it was the first time I felt I had an ally in the battle against the eating disorder. My daughter sat perched on the end of a chair with a sweatshirt and a down coat on clutching a cup of black coffee while I sat there sweating because it was so hot in the office. Joanne was extremely patient and kind while explaining her meal plan in spite of my daughter’s overt hostility. My daughter contained herself until she reached our car and then started to sob. Uncontrollably sob. Crying was nothing new in our house– she had been doing it daily for months– but looking back I realize it was the first time someone challenged the eating disorder, and it was angry.
The six weeks prior to my daughter entering a treatment facility were incredibly painful. I ate every meal and every snack with her when she was home. And it took her forever. Plus it drove me crazy the way she ate each meal– veggies first then protein then the grain. There were many forbidden topics in our house. No one could discuss exercise or bodies or food. What went on the plate had to be eaten. No one could say that he or she was full halfway through the meal. The list went on. And again, she cried all the time. At one point she confessed that prior to the meal plan, if she ate two apples and a bowl of soup as her food for the day she could tell herself at night that she had done a good job. I learned later that it was actually the eating disorder praising her. After she showered, I would find fistfuls of hair in the drain. She had a bald spot in the front of her head. We took the full length mirror out of her room. I packed up all the clothes that she used to body check and gave them to the Red Cross. She wore pajama pants, baggy shirts, and sweatshirts. Her behavior became child-like– she wanted to sit on my lap, sleep with me, wouldn’t leave my side. We could no longer go out for dinner as a family or a couple. It was far too stressful. When I was not with her, I worried that she was throwing her food into the garbage disposal– when she did come, no one could enjoy his meal– the tension and anxiety emanating from her was palatable. When my husband and I were finally able to get an appointment at Children’s for an evaluation, he expressed concern about her being taken out of school– not to be a part of the peer group. I had to bluntly tell him that our daughter was already gone, and the only hope we had to get her back was residential treatment.
It was frankly a relief when she finally entered treatment. I can honestly say that I could not handle her disorder on my own, and she needed good professional care. Picking the treatment facility is a personal choice, but I am very glad she landed where she did. Her case worker was incredible, and the women who managed her daily were loving but firm. She stayed for a period of time, and we began to measure the success of a day by how many boosts she had to drink or not. I’d like to say that she came out of treatment fully recovered but that was, of course, not the case. I was extremely lucky to be able to put together a post-treatment team for my daughter whom she embraced and respected. Her school was incredibly supportive, but I have heard horror stories where schools have not been. Families who have been told that no allowances would be made– it was either sink or swim. I will be forever grateful to her school administrators for working with and not against my daughter. An acquaintance whose child was a recovering anorexic visited with me while my daughter was in treatment. She imparted some wisdom which I found to be extremely helpful. One, it is not her fault. Two, following the meal plan and finishing her meals is non-negotiable. There is no negotiating with the eating disorder. And finally three supports, love, prayer (if that is one’s thing), and food will help to battle against the eating disorder.
It helped me to think of the eating disorder as a separate entity from my daughter. A few months after she got home from treatment, I made a flippant comment, and she laughed, really laughed. It was her first spontaneous expression of joy in months. I am so proud of her because she has worked incredibly hard to separate herself from the eating disorder. She has listened to her team, gone to therapy, followed her meal plan, and found books on her own to study. She has also developed a spiritual side to her personality which in our barely-go-to-church-on-Christmas family is a wonder to see. She has embraced her treatment and truly wants to get well. Does all this mean she has fully recovered? No, she has not. There have been setbacks, but I am extremely hopeful that she will live a full joy-filled life which has no room for an eating disorder.