Weight control through insulin manipulation may result in ‘diabulimia’
NEW ORLEANS — For Asha Brown, her eating disorder began with food restriction and over-exercising. Constant and obsessive thoughts of weight gain and body shame left her struggling over what to eat and what not to eat each day, she said.
But as a person with type 1 diabetes, Brown soon learned she had another option — insulin manipulation.
Insulin, Brown came to believe, was a fat storage hormone, and injecting insulin was the equivalent of injecting weight gain. When Brown read an article in a diabetes magazine about teens skipping insulin to lose weight, she was not afraid of the dangerous practice. It gave her an idea, she said.
“That’s when my binging behavior began,” said Brown, now the founder and executive director of We Are Diabetes, a nonprofit devoted to promoting awareness for those with type 1 diabetes who develop eating disorders.
She said she soon began eating regular meals during the day — only taking very small amounts of insulin — and then binging on as many as 4,000 calories at night. If needed, she would again take only small amounts of insulin to avoid symptoms of diabetic ketoacidosis. Each injection, she recalled, was a mental struggle.
Marcia A. Meier
“I would take just enough [insulin] to survive, in my eyes,” said Brown, who has lived with type 1 diabetes for 25 years.
Brown, now in recovery for 6 years, shared her experience during a special session at the American Association of Diabetes Educators annual meeting on treatment options for patients with diabetes and eating disorders, referred to as “diabulimia.” Insulin restriction should not be confused with bulimia, which involves vomiting.
“I was never questioned by any of my diabetes providers, since the beginning of my diagnosis, about my fluctuating weight, even moving into adolescence,” Brown said. “I was also never asked if I had any feelings about my body size, feelings about my [HbA1c] ... so I did not think it was OK to bring these things up myself. I really didn’t know how. So I felt very ashamed that I was doing these behaviors. I felt very guilty. I assumed I was the only person doing it, and I thought I was crazy.”
A complicated diagnosis
For many patients living with type 1 diabetes, the cycle is similar and can lead to dire health consequences. Experts who focus on both managing type 1 diabetes and eating disorders note that it is important for providers to form a relationship with patients to recognize the signs that a patient with type 1 diabetes may have an eating disorder.
“This dual diagnosis is really complicated,” said Dawn Taylor, PsyD, LP, a cognitive and behavioral therapist with the Melrose Center in St. Louis Park, Minnesota. “And there is a lot of information and a lot of ways that the two diagnoses collide.”
Taylor said studies suggest that 33% of girls with type 1 diabetes will have an eating disorder at some time, and many providers said they believe that statistic is an underestimate.
For many patients, she said, the eating disorder manifests through insulin manipulation because it is the easiest way to mask the disease.
There are several ways insulin manipulation happens, Taylor said. A person may avoid testing blood glucose levels, allowing them to purposefully run high. Some may take only partial doses of injected insulin, run their insulin pump when not connected or take only long-acting insulin. Still, others may take no insulin at all until they begin to feel the effects of diabetic ketoacidosis (DKA). Only then will the person take just enough insulin to stay out of DKA.
Many times, she said, the person does not realize that the behaviors are a symptom of an eating disorder.
“Sometimes they’ve been going in and out of doctors’ offices for years, and no one has put context around this,” Taylor said. “No one has asked them questions about their body, so there is no context for them to even consider this through the eyes of an eating disorder.”
Often the patient is so tired or sick from the effects of insulin manipulation that there is no energy left to engage in other more typical eating disorder behaviors, she said. That can lead some providers to look at the patient as simply lazy or unmotivated, and not as someone with an underlying mental health issue.
Two diseases; conflicting treatments
“Patients often tell me that between their thoughts, their behaviors and their mood, this [weight-control] mindset controls up to 100% of their day,” Taylor said. “You cannot just treat one or the other. If you have both states (diabetes and an eating disorder), it changes and complicates the treatment of this.”
For example, she said, someone with an eating disorder without diabetes is often told to stop looking at food labels, to avoid the urge to obsess over calorie counts. For a person with diabetes, that option is impossible. Then there is the pressure to reach numerous target goals, from HbA1c, to blood glucose, to weight.
“There’s such a pressure to be perfect,” Marcia A. Meier, BAN, RN, CDE, of the International Diabetes Center with Park Nicollet Health Services in St. Louis Park, Minnesota, told Endocrine Today. “I hear the word ‘perfect’ a lot from patients. There isn’t any perfection, and typically a lot of eating disorder patients do have a tendency to seek perfection.”
“People use ‘good’ and ‘bad’ in diabetes care a lot, and that puts pressure on people because it can make you feel so ashamed of what you’ve done,” Meier said. “There are so many judgments, by the numbers.”
Still, to get healthy, a patient must press on — beginning to eat three regular meals along with two snacks per day, reading nutrition labels, taking their insulin properly, attending all of their appointments and buying supplies, Taylor said.
“There is a lot to think about,” she said. “So, as you can imagine, a battle begins. The anxiety increases significantly.”
A patient in recovery also has to learn how to interpret what other providers may say to them, Meier said.
“You can’t control what the whole world is going to say,” she said. “They go back to their [regular] appointments, or their primary care, and people will make the comments that they’re used to making, like, ‘Well, that HbA1c isn’t low enough.’ And here, we’ve just told them, ‘It’s come down 3 points; that is fabulous.’ But, it’s like, it’s not good enough. Then [the patient] questions, what am I even doing this for?”
The “insulin equals fat” mindset is also difficult to change, Taylor said.
“Every time they take a shot, there are thoughts like, ‘I can feel myself gaining weight right now. I’m going to be fat by tomorrow,’” she said. “This is a super difficult thing to overcome, and we need to understand that.”
Relearning normal portion sizes is also important, Meier said.
“It’s a slow and steady thing,” she said. “And what happens is, if we can keep people taking their insulin and eating regularly through the day, spacing it out, as they start to feel better, there is a realization that this is helping me think better.”
Meier said providers on the front lines should be aware of a rapid change in HbA1c numbers in their patients, patients who are not bringing records or a meter in, and making excuses for why, or repeated admissions for DKA.
“Don’t just assume it’s out-of-control diabetes,” Meier said. “Ask the patient, ‘How much of the time do you think about body weight?’ Ask, ‘Are there times of day when it’s really hard to take insulin?’ and not just, ‘Do you skip insulin? Are there times when you feel like you’re eating is out of control, and how do you feel afterward? Are there times where you’ve tried to make changes?’”
More questions, Brown said, may have helped her realize she had a problem sooner rather than later.
“In the last 2 years of my eating disorder, before I started treatment, I restricted calories severely, and I did that by living off of energy drinks and frozen vegetables,” Brown said. “And, what’s interesting, the endocrinologist I was seeing was complimenting me on my weight loss, [telling me] I’m getting healthy. My [HbA1c] was still terrible, but I had lost weight, so I guess maybe someone assumed I was moving in the right direction.
“I share this with you because there are behaviors that are invisible,” she said. “What you’re seeing in the office is not the whole story.” – by Regina Schaffer
- Meier M. T17. Presented at: The American Association of Diabetes Educators Annual Meeting; Aug. 5-8, 2015; New Orleans.