The dining hall of my boarding school was in the same building as the basketball court, locker rooms, and the athletic department, and the stench of sweat-soaked equipment always mingled with the spaghetti sauce and garlic bread from the kitchen. One night, during the fall of my sophomore year, I stood in the line for dinner behind Kate, a girl from New York City. She turned around and asked if I wanted to study biology with her that night. I was thrilled because she was popular. She was rich, beautiful, and always surrounded by a group of friends. I remember watching her fill her plate with noodles and meat sauce and thought, maybe just this once, taking a ladle full of the "forbidden noodles."
I followed her to her table and then we sat down to eat spaghetti. When she went back for seconds, I was surprised, but followed her again. I had diabetes for only a year, but I knew spaghetti was on the "bad list" of foods at 42 grams of carbs per serving. But it tasted so good that I ate every drop of the thick tomato sauce with warm, spicy meatballs and crunchy garlic bread (24 grams) dripping with butter. I wondered if Kate knew that I was diabetic and not supposed to eat all this food. When we cleaned our plates again, ignoring everyone else at the table, Kate said it was time to go so I followed her out of the dining hall and down the path toward her dorm to study.
When we got to her dorm, she said that she was going to order pizza. I remembered thinking that that was strange, because I was already full from the pasta, but I was thrilled to be hanging out with her and didn't ask any questions. After a while, the pizza arrived (20 grams of carbs per slice; pizza is high on the glycemic index and can cause unstable blood glucose levels), and the smell filled the room. I couldn't resist. I wasn't hungry, but I took the slice that Kate handed me. We talked about biology, and when the pizza was gone, Kate said she wanted a dessert. Grabbing my arm, we walked across the campus to the mini-mart. Kate bought Ben & Jerry's ice cream (18 grams of carbs per serving) and cigarettes. I was full and knew the ice cream would be too much, that my blood sugar would sky rocket, but Kate reached over and grabbed my elbow, guiding me up the steps of her dorm. We ate the ice cream side by side on her bed with our biology book open in front of us. When the tub of ice cream was empty, Kate said, "let's go," I didn't ask any questions.
We walked through the dark streets of the campus. The tree-lined road was empty and growing dark. I looked around and wondered where everyone was. Where were the teachers who would ask us what we were doing, and why weren't we in study hall? We reached the art building and I followed Kate to the bathroom. She opened the door and turned on a light. The room was small and on the counter, there were paint brushes left out to dry. With the door closed and locked, I felt claustrophobic, but there was nowhere to go. Kate reached under the cabinet and pulled out a toothbrush. "Will you hold it?" she said. She meant her hair. I must have looked at her strangely because after that she said, "I'm not going to get fat from all that food, are you?" I grabbed a fistful of her thick brown hair while she leaned over the toilet, and then shoved the toothbrush down her throat and gagged. The sound echoed off the walls and the food we'd eaten sat like a cement brick in my stomach. She gagged again and again, flushing each time after she'd thrown up. I closed my eyes. When she was done, I let go of her hair. Kate splashed water on her face and handed me an extra toothbrush.
"Your turn," she said. I realized that her stomach was emptied out, free of all the calories we'd consumed, and that mine would stay full.
My instinct was to say that I couldn't throw up what I'd eaten because I had diabetes, but I knew that diabetes also meant that I should never have eaten all that food in the first place. But it felt so good to eat without thinking, to eat the foods that were on the bad list: pasta, pizza, and ice cream. Foods that I'd missed on my restricted diet, foods that tasted so good. Eating those foods with Kate was my first diabetes rebellion and for a brief time, it felt good. But walking back to my dorm in the dark, my stomach bloated, I realized what I'd done and was scared. I was scared of getting low, scared of being high, and scared that having diabetes meant that I couldn't follow Kate's footsteps.
For years, I wondered why Kate picked me that night. I wondered if she saw something in me and knew that I would follow her, or maybe, she knew that I wouldn't ask any questions. Did she see the way I looked at the food in the dining hall, the way my eyes filled with longing? Had she been watching me?
Eating disorders are nearly twice as common in young women with type 1 diabetes as their healthy peers. A nurse at Duke University says:
By the time of diabetes diagnosis or during periods of poor metabolic control, there may be a loss of weight. For some young women in the immediate preteen or early teen years, this weight loss may be perceived to be highly desirable. However, the introduction of insulin treatment or improved metabolic control inevitably leads to weight gain, which may negatively affect the vulnerable teen.
I'd lost 15 pounds in less than a week on my already thin frame when I was diagnosed, and as I search through my photographs from those years, I try to see a change in my body size. I never became heavy but I began to write in my journal about wanting to be thin. The language in my writing begins to reflect a rapidly diminishing sense of self-worth.
Another common theme relates to feeling ashamed or stigmatized about having diabetes. The attention to body, eating, and planning to eat required for good diabetes care may be in opposition to the eating disorder beliefs that bodily needs are shameful and that denying oneself of food is morally laudable.
What would I have been like if I was never diagnosed? What would my relationship to my body and to food have been like if I'd stayed healthy? I wondered.
Every time I stood in line at the dining hall, I thought about that night with Kate. I watched her walking from her table up to the bathroom and knew what she was going to do. Every time I tested my blood sugar, gave myself a shot, and ate, whether I was hungry or not, I thought about Kate. I pushed the food around on my plate, for I was not hungry, and then, I swallowed some food, not tasting it.
Dr. Ann Goebel-Fabbri, an instructor in psychiatry at Harvard Medical School and an investigator on Behavioral and Mental Health at the
Joslin Diabetes Center, is an expert in the field of diabetes and eating disorders. She says:
So much attention to food is required and taught by diabetes educators, they're trying to come up with a more flexible way of teaching this and a less morally judgmental way of teaching this, but it still gets misconstrued, and it's not ever going to be a normal relationship with food because there's all these calculations that have to be done. With old style diabetes management, before the days of "designer insulins," you had to eat at certain times of day, whether you were hungry or not. Patients unlearned their body's usual response to hunger, and had to eat according to requirements.
As women with diabetes, we must learn to listen to our bodies and develop a heightened awareness with our body's signals. And because our bodies often give us mixed signals (such as when our blood sugar is on the rise and we become very hungry), this relationship is not innate; it is learned through trial and error. Dr. Goebel-Fabbri says that many women experience a feeling of betrayal and may try to control some aspect of their lives that does feel controllable. This aspect is often food. Rachel Garlinghouse says:
I am a control freak in many areas of my life, and I think this has served me well when it comes to my diet. I carefully choose all my foods, good or bad! If I'm going to indulge, I do so by making sure I'm getting exactly what I want. For example, I could care less about a bag of chips but brownies? Bring them on! So I don't eat the chips and the brownies. I'll portion out my dessert (in a one-cup bowl) and enjoy it!
EATING DISORDER STATiSTiCS/FACTS
■ Researchers estimate that 10-20 percent of girls in their mid-teen years and 30-40 percent of late-teenage girls, and young adult women with diabetes skip or alter insulin doses to control their weight.
■ The mortality rate from diabetes alone is roughly 2.5 percent annually. For anorexia nervosa, it is 6.5 percent. But patients with diabulimia—which is referred to, in health care circles, as dual diagnosis—have a mortality rate of 34.8 percent per year.
■ According to anecdotal research that was done at Park Nicollet, patients with diabulimia routinely suffer from retinopathy, neuropathy, metabolic imbalance, depression and other mood disorders, kidney disease, and heart attacks.
■ Self-reported insulin restriction conveyed a threefold increased risk of mortality during 11-year follow up.
Possible Causes/Risk Factors:
■ The cycle of inexact insulin dosing can cause weight gain, which increases insulin requirements and resistance. And there's another factor at work: The insulin-producing cells that were attacked by the disease also make amylin, which works with other appetite regulating hormones, such as leptin, to regulate the sensation of fullness. The resulting difficulty of diabetics to determine whether they are full has been documented in anorexia. A behavioral health psychologist who's research specializes in psychosocial aspects of types
1 and 2 diabetes and obesity in children and adolescents says, "Destruction of p-cells results in the inability to secrete both insulin and amylin, contributing to dysregulation of appetite and satiety."
■ Interestingly, most type 1 diabetics lose a lot of weight before diagnosis because they excrete rather than metabolize calories. For months, they may be able to eat large amounts of food and not gain any weight. When they start taking insulin to "control" their disease, they can gain a lot of weight quickly.
■ Loss of control because of required monitoring and reporting of food intake, physical activity, and blood glucose
■ Loss of autonomy because of parental/spousal/familial concern/ vigilance regarding health status
■ Increased perfectionism because of the accountability to health care providers regarding self-care behaviors and glycemic status
■ Lower self-esteem and body image after diagnosis
■ The CDC report states that the stress related to having a chronic illness can exacerbate other difficulties for both the patient and the family and make the eruption of a latent eating disorder more likely. Persons with diabetes who are struggling with issues of identity or adjustment brought about by the diagnosis of a chronic illness are at higher risk of developing eating disorders than are those who are coping fairly well with life.
Rachel Garlinghouse says:
I lost about 35 pounds during the year and a half I went undiagnosed. I was wearing a size zero (and all those clothes were too big). The initial weight loss yielded a lot of compliments; however, after I started to lose pound after pound, I began to look like a person who had been in a concentration camp. My hair was thinning, my skin was yellow in color, and I had no energy. At my lowest point, I was 96 pounds, which is 42 pounds under the normal weight for a person of my height. I was very depressed, and it only got worse with the nasty comments I heard constantly. One man at my gym walked by me, gave me the up and down look, and said, "Eat a hamburger." People, including my own doctor, believed I had anorexia. I realized how alone a young woman with an eating disorder must feel, and the comments only made the situation worse.
After my diagnosis, I gained about 50 pounds in a year and a half. It was incredibly depressing to go from "normal" (prediabetes), to drastically underweight, to weighing more than I ever had in my life. My weight is now steady at 140 pounds, which is normal for a woman of my height. I do wish I weighed about 10pounds less sometimes; however, I know that health and my mental stability are far more important than a number on a scale. I exercise daily, I make healthy food choices, and I model healthy behaviors for my family, especially my young daughter.
Michelle Sorensen was a little underweight when she was diagnosed:
I had always been petite but in those months leading up to the diagnosis, I ate and drank so much, but was quite thin. My biggest weight loss came at the time of the 1-year anniversary of my diagnosis. I had become quite depressed, was not eating enough, and was stressed about a relationship I was in at the time. Plus, I was diagnosed in the middle of my masters, so I was about to start my PhD, and was struggling to finish my master's thesis, and got thinner and thinner. I have always had pretty stable weight and a healthy approach to managing weight, but I knew I was getting obsessive about the number on the scale. I literally felt like it was the one thing I could control. ^s I got thinner, I felt an odd sense of satisfaction . . . I would look at my stomach, with bruises from injections, and I could see the bones in my back and hips . . . and I remember thinking, "Yes, now I look sick." Diabetes is a strange disease, because you can be in crisis with your health and you look so normal. It is a blessing on the one hand, but if you aren't good at asking for help, it also means everyone will think you are fine when you are not. Luckily, I got past that stage and started to gain weight back. I went on the pump about 2 years after my diagnosis and initially gained some weight from that change because I had such newfound freedom in when I ate and how much. I overcompensated a bit for the years of restriction!
SIGNS AND SYMPTOMS OF DISORDERED EATiNG
■ Women repeatedly not bringing their meter into doctor appointments
■ Unexplained weight changes
■ Gradually increased A1c
■ Recurrent yeast infections
■ Recurrent diabetic ketoacidosis (DKA)
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