Type 1 Diabetes: You Are Not Alone With Diabulimia

A small hand slowly rises at the back of the room. “Yes, in the black shirt,” I call out. I can’t see the woman; she seems somehow shrunken into herself, a sweater pulled around her so tightly as if she’s trying to escape into the fabric. Silence seems to pervade until a small sniffle echoes through the conference room, then suddenly, sobbing-the kind that breaks your heart just hearing it.

Her small shoulders tremble as she breaks down in a room full of women she’s known less than two days. “I…” she shudders and tries to catch her breath. “I’ve been doing this on and off for almost two decades. I’ve been slowly killing myself and I didn’t even know it had a name.”

I stand up and leave the panel table, wrap my arms around her and tell her it’s OK to cry.

Tears she’s been holding back for over 20 years finally fall from the tired eyes of a woman who feels broken by time and disease, tired of hiding and lying to her family. It’s as if giving her permission to cry releases something in the room, and everyone’s wiping their cheeks, some a silent tear of solidarity, others weeping as something breaks and truths of their own behaviors come cresting over the façade we hide behind every day.

This is the beauty and genius of DiabetesSisters, an environment where women finally feel safe enough to acknowledge the hurt they’ve been carrying around for years, an environment where they can give themselves permission to cry and to finally put themselves first in their often too-busy lives. So it’s the perfect environment to tackle a subject as delicate as an eating disorder. Which is where I come into the picture.

The medical field prefers to call it ED-DMT1-eating disorder-diabetes mellitus type 1-but it’s more widely known by its media-given name, diabulimia. Diabulimia is an eating disorder wherein a diabetic purposely withholds taking insulin in order to lose weight. Medical journals have been reporting intentional insulin restriction for weight loss as far back as 1989. Twenty-five years later this practice is as pervasive as ever.

Although the practice is not new, public awareness about the disease is. In 2008, I went to an eating disorder treatment center that left me medically fine but psychologically shaky and feeling more alone than ever. Neither information nor resources about diabulimia were available. I knew I couldn’t be the only one engaging in these destructive behaviors, so I reached out the only way I knew how: the Internet. I had to know if there were other people out there who saw their insulin as the enemy rather than a saving grace.

Suddenly hundreds of people from all over the world began coming together in the Diabulimia Awareness Facebook support group (www.facebook.com/groups/DiabulimiaSupport/) and sharing their stories of hope and survival, of depression and relapse, each of us finally happy to have someone who truly understood the nuances of battling an eating disorder and diabetes. But many of those that reached out needed so much more than just camaraderie so in 2009 Diabulimia Helpline was formed.

By 2011 our online community had almost 500 members, but I still felt something missing. I heard about a conference hosted by an organization called DiabetesSisters that was having a presentation by Dr. Susan Guzman on the emotional aspects of diabetes. While I had taken the time to tackle my eating disorder, I hadn’t really dealt with the emotional issues that affect every person with diabetes. So in October of 2011 I attended my first DiabetesSisters Weekend For Women conference. I never anticipated the true impact it would have on me.

In a conference room overlooking San Diego Bay, I broke down as women talked about their anger and frustration at their diabetes. I had never been in a room with so many diabetics; it felt like meeting a group of friends I had always had, but just never really known. I kept hearing the same frustrations with food and their bodies that I had struggled with that had led to my diabulimia. I sat with Brandy Barnes, DiabetesSisters CEO, at lunch that weekend so I could learn about her organization. Their mission of connecting and supporting women with diabetes aligned so well with what Diabulimia Helpline was doing I knew I wanted to work with them in the future!

In 2012 we used part of our conference scholarship to fly a client out to the Weekend for Women conference in Raleigh, North Carolina. She found the experience just as gratifying and emotional as I had the year before. It was her first chance to meet and connect with other diabetic women, and it had a powerful affect on her. “It was more than just the sessions,” P said, “it was the chance to sit down at lunch and see all these women pulling out meters and insulin and no one looking at me like I was a freak.”

But once again I heard discontent with the way food education was being taught and the relationship it was causing these women to have with food and their body. A study in 2000 showed that women with type 1 diabetes are 2.4 times more likely to develop an eating disorder than their non-diabetic peers. These were the women most at risk for developing an eating disorder, but it was clear they were not getting any of the help they needed from doctors or diabetes educators. This time I approached Brandy about having a session devoted exclusively to disordered eating and diabetes.

At the next conference in 2013, Dr. Lorraine Platka-Bird, nutrition therapist at Center for Hope of the Sierras in Reno, NV, a residential treatment center with a leading diabulimia program, led such a session. Because of our extensive work with Center for Hope, Lorraine pulled me up to the front of the room to help answer questions from the perspective of someone who had had struggled and come out the other side. At the end of the session two women pulled me aside, tears in their eyes, and asked for help. It would be the first time someone broke down to me at one of these conferences, but it would not be the last.

Brandy approached me and told me how powerful several people said the session had been and asked if I would speak on a diabetes and eating disorders panel at the next conference in San Francisco. It was there that I got a chance to tell my full story, and there that a woman broke down in a room full of former strangers because she finally felt safe. It was there that I witnessed the real transformation DiabetesSisters can have.

“You’re not alone,” I say to the woman at the panel as she continues to cry. Looking around the room at these women, all of whom tackle this invisible disease every day, I know she’s not. And because she came here I know she will get the help she so desperately needs.

Erin is CEO at Diabulimia Helpline in Seattle, WA, the country’s only non-profit organization dedicated to education, support, and advocacy for people with diabetes who have eating disorders. The organization’s website is located at www.diabulimiahelpline.org

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