Goebel-Fabbri said that some diabetics who have reduced their insulin intake can become fearful of taking the drug again.
"They have a lot of hunger signals because, on the cellular level, the cells can't access sugar. So the cells are starving. The body is starving," said Goebel-Fabbri. "That has further [unregulated] their appetite and eating behavior. I think that then adds to the fear that if they take this insulin, their hunger is going to be really high and [they'd lose control.]"
Williams spent her junior and senior years of high school in and out of eating disorder clinics.
When Williams would start to use her insulin consistently, her body would swell with water weight. The temporary swelling, which was the result of her body trying to hold on to water after being dehydrated, could mean that Williams gained as much as 20 pounds of water weight. Her legs swelled so much that the skin looked like "putty."
"I couldn't bend my leg," said Williams. "I thought I was going to say like that forever."
The swelling was temporary, but it made Williams too scared to stick with her insulin regimen for any length of time.
Dawn Taylor, a licensed psychiatrist at the Melrose Center who treats people suffering from eating disorders and is affiliated with the International Diabetes Center, said many patients with diabulimia initially feel worse when they retake their insulin.
"Once they start taking care of themselves, that's when the complications can start," said Taylor. "You can get over a lot of these complications [but] it's not very rewarding."
In college, Williams became so fatigued she spent most of her days asleep in bed.
"Nobody wanted to live with me," said Williams. "My roommates were calling home to my family, [saying], 'There's something wrong with your daughter.'"
Now over 18, Williams' parents couldn't force her into treatment anymore.
"What could my parents do? I'm sitting there telling them I'm fine," she said.
In 2007, Williams went to the doctor with a swollen ankle. After an x-ray showed no fracture, Williams was sent home with medication. Six months later, Williams fainted suddenly and was rushed to the hospital with her ankle sizably swollen again.
She was sent into the operating room to clear out the infection from her ankle. But after the doctor made the incision the medical team realized her ankle was not just infected but shattered.
Because of nerve damage from high blood sugar levels, Williams had been walking around on a broken ankle for months without even realizing it. Her ankle was so damaged she would have to remain in a cast for two years as it healed.
After a decade of insulin misuse, Williams, then 24, was suffering from osteoporosis. Sitting in the hospital bed, Williams finally decided she needed help.
She remembered thinking, "This has got to stop or I'm going to have medical issues for the rest of my life."
But in order to get help, Williams had to fashion a makeshift treatment team, which included a psychiatrist specializing in anorexia and bulimia, another counselor and a diabetes expert, in addition to her primary care doctor.
"It was really hard," said Williams, who also went online looking for information or support groups on diabulimia, but found little.
There has been little research on effective treatments for patients with diabulimia. An article published on the Juvenile Diabetes Research Foundation website last year called for a multi-disciplinary approach to treating diabulimia by creating a team that includes a medical doctor, therapist and registered dietitian, at minimum.