Why Is Insulin So Important?
Normally, most of the food you eat is broken down into glucose (aka blood sugar), which is the body’s main source of energy. Insulin shuttles glucose into your cells, which then either burn it for fuel or store it as fat. Without insulin, glucose can’t reach the cells; it simply floats in the bloodstream unused. Left to build up, excess glucose can quickly damage blood vessels throughout the body and wreak havoc on every organ. Among the early symptoms of diabetes type 1 are excessive urination and rapid weight loss, like that which Cervantes experienced. Once diagnosed, people with type 1 diabetes must take insulin in the form of medication to help regulate their blood sugar. Proper doses of insulin spare the kidneys from being overworked and protect the rest of the body from harm. It also prevents the rapid weight loss that is one symptom of untreated disease. (1)
An Eating Disorder Born of a Disease
Still, Cervantes liked her weight loss and was ambivalent about taking proper doses of insulin to manage her blood sugar levels. “I didn’t want to fix myself because what was there to fix — I was thin,” she says. Over the next several years, she purposely skipped most of her doses of insulin in order to maintain her new waistline and wardrobe. Cervantes’s behavior was characteristic of eating disordered behavior known as diabulimia — a nonclinical term, coined in popular media, for misusing prescribed insulin to manipulate weight. One study done by the Joslin Diabetes Center followed 234 women with type 1 diabetes and found that 30 percent of women reported restricting insulin (though not all women did it to affect their weight). (2) Like bulimia, the focus of diabulimia is not on what is eaten, but rather on purging the calories taken in — in this case, by neglecting to take the appropriate dose of insulin. (3) The results can be life threatening. The Joslin Diabetes Center study also found that women with diabulimia were 3.2 times more likely to die over the 11-year study period, and to die an average of 13 years younger than those who did not restrict their insulin. The study included girls as young as 13 and women as old as 60. (2) RELATED:Your Top Type 1 Diabetes Questions, Answered
An Eating Disorder That Affects a Vulnerable Population
People with type 1 diabetes may be more vulnerable to developing eating disorders. That’s because, ironically, managing the condition requires behaviors that mirror those adopted by people with eating disorders: intensely focusing on everything consumed, closely reading nutrition labels, and monitoring physical activity. “It’s all very complex and it can really disrupt a person’s relationship to their food and to their hunger,” says psychologist Ann Goebels-Fabbir, PhD, an assistant professor of psychiatry at Harvard Medical School in Boston and author of Prevention and Recovery From Eating Disorders in Type 1 Diabetes: Injecting Hope. Add to that the common — but wrong — notion that weight gain goes hand in hand with insulin therapy (today’s treatment regimens are far more precise than in the past), and it’s no wonder that women with type 1 diabetes are 2.4 times more likely to develop an eating disorder than women without diabetes, according to previous research. (4) RELATED: Exercising With Type 1 Diabetes: Should You Try These Fitness Trends?
Other Factors May Contribute to Diabulimia Risk
People with type 1 diabetes are twice as likely to have an anxiety disorder, noted a study published in February 2018 in the journal Diabetic Medicine. (5) They are also three times as likely to suffer from depression as those without the disease. (6) Many people with type 1 diabetes feel acutely ashamed of it, although, as psychologist Cynthia E. Muñoz, PhD, MPH, a member of the American Diabetes Association Board of Directors, says, “type 1 diabetes is an autoimmune condition and the person who is diagnosed with this condition did not do anything to cause it.”
Warning Signs of a Diabulimia
How can you know if someone close to you has diabulimia? Warning signs include:
Rapid weight lossFrequent urinationA change in eating habits — eating more than usual and not gaining weight, or eating more often in secretIncreased thirstIncreased irritability (3)
Diabulimia Is Not Always Recognized
Skipping insulin is listed as a purging behavior in the current American Psychiatric Association Diagnostic and Statistical Manual of Mental Disorders (DSM-5), and more and more health professionals who regularly treat people with diabetes are aware of the condition. But far too many others are not. Cervantes had no name for what she was doing. She did know she had to keep her weight-loss trick a secret from her mother and doctors, but she assumed she could employ it for the rest of her life. The physical toll was severe. She often felt shaky, light-headed, and sometimes broke into a cold sweat or wobbled as she walked due to muscle loss. “I thought maybe if I ignored it, it would go away,” recalls the office manager from Salina, California, who is now 26. “So I took only enough insulin to be able to almost fully function.” Then came the day when Cervantes discovered she could not. While on a day trip with her boyfriend, she suddenly found herself gasping for breath. “I just figured ‘I’m out of shape,’” she recalls. “I kept shrugging it off.” Then when a terrible headache hit, leaving her extremely nauseous and her vision blurry, she simply took a few Tylenols and told her boyfriend she wanted to go home. When they arrived, she collapsed. Cervantes had fallen into a life-threatening state called diabetic ketoacidosis (DKA). Desperate to stop its cells from starving, her body had released hormones that, in turn, released byproducts called ketones that turned her blood acidic. If she had not been rushed to the emergency room, she would have died. “I remember the doctor telling me, ‘If you would have been here even an hour later you wouldn’t be alive,” she recalled. “That was the moment that I realized this not a joke. There are more important things than being thin and buying nice clothes.” With the help of a multidisciplinary team — a physician, psychologist, and dietitian — Cervantes is now healthy and carefully managing her diabetes with an insulin pump that continuously delivers small doses of the hormone to her bloodstream. Her message to others: “There is nothing to be embarrassed about or feel guilty about. You are not alone. There’s this huge community out there that is willing to communicate, to listen, to help you make life with Type 1 diabetes easier so that it’s not a burden. It’s really important to reach out. It’s hard but it’s worth it.”
