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Diabulimia: The Illusion of Control
Katherine Marple -Author of Wretched
I was diagnosed with type 1 diabetes at the age of 14. Suddenly, I went from being a carefree teenager to a patient who had to be concerned with every carbohydrate in a cracker. Not only was I dealing with the hormones and emotional adjustments of adolescence, but I was also learning to cope with and accept a disease that wanted a part of every minute of my day. I also had to deal with the illusion that other teenagers had nothing to worry about except how to fit in, and the fact that I was no longer part of that group of carefree kids. I was now the student who had a free pass from teachers to eat or drink during class. The girl who left fourth period ten minutes early to go to the nurse's office to test her glucose. The sick kid who had a doctor's appointment every two months and came late to school because of it.
By the age of 16, I was very anxious to be considered "normal." Over the two years since my diagnosis, I had lost many fickle "friends" who used the excuse that they could catch diabetes by sitting next to me. I knew that it was really the fact that teenagers are so unforgiving of nuances that by sitting next to me during lunch or admitting that I was their friend, they were adding another difference between them and the "accepted."
I had gained about 15 much-needed pounds in those two years, having had only 110 pounds on my 5'8" frame at diagnosis. I was jaded by questions from relatives who seemed to only want to discuss "Katherine with diabetes" and not any other part of my life. I was tired of the doctors telling me what I could and could not eat, what time I needed to eat, in what range my blood sugars needed to be, and how many minutes of exercise I needed. I was exhausted by all the thinking, the waking up at 6:00 AM to test my glucose and inject NPH, and all the bruises across my stomach and thighs from needles. I was angry that I couldn't just be a normal teenage girl and that my years of adolescent discovery were being tarnished by an all-consuming disease.
To silently buck the system, I started to skip meals. I lied to my doctors about the meals I didn't eat and the insulin I didn't inject. When my mother noticed that I had skipped dinner for weeks, claiming to be sick or saddled with too much homework, she became concerned. To satisfy her and stop the questions, I began to eat again. But then I would go to the bathroom, stick the back of a spoon down my throat, and throw it all up. After a few months of doing this, I no longer needed to use a spoon or a finger because my gag reflex was so highly developed.
I kept this up for over a year. I got back down to 110 pounds and learned to love the feeling of an empty, churning stomach. The knowledge that I had a secret that I didn't share with anyone helped me feel secure. I didn't do these things to get skinny. I did them to feel like I had control over some portion of my life, no matter how small a part or how destructive the path.
The doctors struggled to understand my waning control of my glucose, but attributed it to teenage hormone changes. My parents wondered why I was losing so much weight, but figured that I was hitting a teenage growth spurt. I felt guilty for lying to everyone, but was comforted knowing that even though I had to tell these people about every shred of food I ate while they calculated my pee, weighed me, and took blood from me over and over again, I still had something about me that was personal and private.
I am not proud of this period of my life. I'm not sure that I've even ever admitted most of it to my parents to this day. But I feel that it is important to be honest because I know that there are many adolescents with diabetes who have done and will do the same thing. Going through teenage years is tough enough, but add a chronic disease to it and you're likely to run into some emotional issues. I don't purge or starve myself these days. I'm actually a pretty stellar cook. It was simply a coping method that I used to deal with accepting a disease as a permanent part of my life. There are surely better coping methods available, but this is the path that I took.
Categories: Blood Sugar, Carbohydrate Intake, Diabetes, Diabetes Health, Diabetic, Diabulimia, Glucose, Teenagers, Type 1 Issues
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Comments
Katherine, thank you for such a brave account of your challenges with diabetes, and the food 'obsession' that it makes us have. It really is very difficult owning up to such a private part of our lives -- a part so many would love to just judge, without living it. As a binge eater, myself, it really is very difficult for me to come to terms with my struggles, and even discuss this painful part of my life... So I just want to say THANK YOU for having the courage to talk, and helping many of us feel not so alone. You're a brave woman, and I'm glad to count you as a friend.
I absolutely feel and understand the feeling you had... That is really brave of you saying these things here and I absolutely love that... I have been also diabetic for the past 12 years and have had the exact same feelings...
Anyhow after some years I could feel confident enough with my conditions and now I feel absolutely normal and perfect...
The reason I loved your writting is that you didnt try to get to the conclusion that you had made a mistake behaving like that but you are still sure of what you were doing at that time... I think you have a strong and brave character... Be proud of that...
Teenagers are not the only ones who do this or feel this way. Diagnosed as an older adult, I too did great the first 3 years. When I hit that 4th year, my resentment of being controlled by this disease of diabetes went sky high. People don't understand what it feels like to wake up every morning of your life and have to immediately think about what you can and cannot eat or drink for the entire day. And you have to do this for the rest of your life! It's not like you can do without food or drink and still survive, so there is absolutely no getting around the control diabetes has on your life. The resentment is still with me and I really doubt that it will ever go away. I'll just have to deal with it, the needle pricks, the dr appointments, etc. I think part of what keeps the resentment going is that people who do not have diabetes do not have a clue as to what it does to your mental, emotional and physical existence. They just say oh, with the eating right and exercise it will go away. Yeah, right! Just venting. Thanks.
Thank you so much for being honest about this time in your life. As the grandmother of two boys (brothers) who have type 1 diabetes I know that there are daily struggles that most people don't even think about. Be proud of who you are and know that yes you have type 1 diabetes but it doesn't have you.
Thanks for your story Katherine. I was diagnosed with type 1 diabetes at age 17. It sucks having a disease without a day off and not many people knowing about the burden you carry day in and day out. It's okay to throw yourself a pity party now and then. I still do. But you also have to get a grip. It's your life and your health you're managing. Do your best and be strong. Not all days are perfect. Some days are way better than others. Such is life. Don't let it be a disease that owns you though. What I mean is pay attention and do what you have to do but live. Enjoy life. Yes, one day at a time is good advice. Here I am 35 years later, in great health without complications from diabetes, married for 31 years to the guy who was my boyfriend back in high school when I was diagnosed, working in the health field, a mother of two healthy daughters (one married) and the grandmother of one with another on the way. People are often amazed I look great and have diabetes along with Celiac disease. Crummy health odds but oh, I won't allow it to rain on my parade in life. Think positive and yea, life is not fair but make the most of what you have. And I'd bet you have lots of blessings. Hang in there. All the best to you!
I could not of said it better,what a wonderful person you are to give such insight into a disease that seems to be relentless.I have been a type 1 for 35 years now and have never read such an honest story about living with this.You will be a great role model for others,great job.
hey katherine good for you you will learn in time you never make any of the drs happy..in my 30+ years as a diabetic i had that same problem with friends and still do even though i am in my 40s people just don't understand the diabetes and the fight every day that you have to do to keep your witts about yourself..i still have problems dealing with the everyday problems
It may seem odd, but mostly what I got out of this article was a renewed rage at school systems who will not allow young diabetics to treat themselves for diabetes.
When I was in school, the tried to send me to the nurse to test my blood sugar, drink juice, or give myself shots too, but I refused and raised hell. Guess what? The school gave in.
Of course you felt alienated when you weren't allowed to just be like, "This is simply what I must do, so I'm doing it, and you can deal!"
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