I was pretty shocked when I first heard about diabulimia. This is a practice some teens and young women with Type 1 diabetes are using in order to lose weight. They purposely underdose their insulin allowing their blood glucose to skyrocket. The excess blood glucose is eliminated in the urine. “Traditional” bulimics purge excess calories by forcing themselves to vomit. Diabulimics purge excess calories by underdosing on insulin and peeing out unmetabolized glucose.
Girls and young women with diabulimia will tell you they feel really crummy as their glucose levels increase and they increasingly rely on metabolizing fatty acids for energy instead of glucose. The end result of underdosing insulin is a state known as diabetic ketoacidosis, that is characterized by high blood glucose and increased acidity of the blood—a potentially fatal condition.
What it feels like
Here is how one young woman describes (on the internet) what it feels like to be chronically hyperglycemic and ketotic:
“…I skipped all my insulin but two units at night, sometimes only one. I would consume up to 40,000 calories a day, purge maybe half, and pee the rest out. My muscles deteriorated. My hair fell out, and many nights I couldn’t breathe.
In February (2003), I had a heart attack after taking up to 80 laxatives a day for three months, so I knew I had to quit that. Even Stanford [sic] didn’t know what to do. They sent me home and told my Mom to expect to find me dead in my bed one day soon.
My days became consumed with EKGs, getting labs taken, and doctor visits. I was so dehydrated that if I did venture to take my insulin, I would gain so much as fifteen pounds of water overnight, so I quit trying.
I became too weak to go anywhere. I would cry for no reason, low cries, because I could barely breathe from all the acid in my lungs. My heart constantly raced, I developed G.E.R.D. [reflux], my labs were always off, and I was very weak. I would sleep 20 hours a day, the other 4 hours I spent between the kitchen and the bathroom, eating , drinking, peeing, and sometimes puking. My speech became slower, and it was an effort to even think.
The scariest day was when I lay awake in bed, too weak to move, and I heard my Mom whisper to my brother, “go make sure your sister is breathing”.
I didn’t know it at the time, but they were planning my funeral.”
Over time, continual underdosing of insulin also contributes to the development of complications of diabetes, such as retinopathy (diabetic eye disease), nephropathy (diabetic kidney disease), and neuropathy (diabetic nerve damage). It is no laughing matter. Diabulimia is as serious as other, more “traditional” eating disorders such as anorexia and bulimia.
Here is an internet quote from “Jennie”, a woman who has “practiced” diabulimia for more than 10 years:
“I have been suffering from diabulimia for 10 years now. I became diabetic when I was 17 and quickly found out on how to keep my weight down by not taking my shots. 2 years ago I went into diabetic coma for 3 days. The doctors made my family come in and say goodbye because I was not suppose to make it. I thought that would wake me up but it hasn’t. I am 6 feet 1 inch and weighted 130 pounds for the past 10 years. I see the pain in my family eyes but for some reason I just cant get my diabetes under control. I have so much damage to my body that I feel more like a 90-year-old instead of a 27-year-old. I have completely ruined my chances of ever having children and I have to take a pill everytime I eat in order to digest my food. I have tried many times to get my diabetes under control but everytime I start taking my insulin regularly, I gain about 20 pounds of water weight. This gets so frustrating that I just give up. If any one knows a solution to the water weight gain, PLEASE let me know. I take water pills that my doctor gave me but it does not help.”
Like anorexia and bulimia, diabulimia is a body image disorder. Girls and women with this disorder need specialized help to overcome this serious, and potentially fatal, condition. Not all doctors, diabetes educators, or behavioral therapists are adequately equipped to help individuals with diabulimia. If you are suffering from this disorder or if you have a loved one or friend with this disorder, you need to seek help from experts.
Where to get help
The National Eating Disorders Association (NEDA) has an information and referral hotline (800-931-2237). You can also find therapists by using the referral form on their website. Parents, family, and friends can a learn how to support their loved one with an eating disorder through the Parents, Family, and Friends Network.
I did not find any specific reference to diabulimia on the National Eating Disorder Association website, so I suggest interviewing the therapists to find out if they have expertise in this disorder prior to making an appointment. In addition, it is crucial to involve your treating endocrinologist so that he/she can help provide support for management of diabetes and any complications.
Readers, if you have other ideas, please post them in the comments section. Your suggestion could save a life.