Eating My Cake

This post is dedicated to the memory of my best’s friend’s brother, who recently died of this complicated disorder. When she found out why he died, I promised her I would post in his memory in an attempt to use what little presence I have in the blogosphere to raise awareness of this relatively unknown and extremely dangerous condition.

Imagine being able to eat virtually whatever you want while losing massive amounts of weight, or maintaining an extremely svelte figure. This is a dream many have had, and an opportunity few would turn down. It would be wonderful… but nothing like this can exist without dangerous risks. This is the story of a condition that allows for that “magical combination,” but at a deadly price.

In Type I diabetes, one of the first clues the condition exists is often dramatic weight loss, or an inability to gain weight. Since this condition often starts in childhood, this is a critical period in terms of learning how to have a healthy relationship with the body and the food that fuels the body. Diabetes takes something most of us take for granted as children - eating without much thought beyond “I’m hungry” and “I like this” - and makes it extremely complicated. Food becomes almost like a prison. It’s regimented, organized, structured… and there are major penalties for breaking the rules.

When you add insulin injections to the mix, the situation becomes even more challenging. Suddenly, the body holds on to weight in a way it previously couldn’t and didn’t. This fabulous article details the experiences of diabetics who have struggled with a relatively unknown eating disorder that grew out of a childhood health crisis: Diabulimia.

In diabulimia, the diabetic learns that withholding insulin results in weight loss. Some learn from other diabetics, or websites. Some learn by accident. Regardless, the lesson is a dangerous one, “if I starve my body of insulin, I can eat and lose weight.”

The risks are obvious. Without insulin, the body begins to rapidly deteriorate. Many diabulimics learn to withhold their life saving medications just long enough to avoid a diabetic coma. This, from the article mentioned above, describes that experience.

God, she needed air. Erin Williams lay in bed, her lungs aching with each long, excruciating gasp, and still she couldn’t get enough. Her heart was racing, pounding against her small chest. And she was so thirsty. She’d been up only an hour before to greedily gulp down water before falling back into bed and succumbing to a restless, uneasy sleep. Now she was awake again, her bladder unbearably swollen. Williams pulled herself from the bed, so dizzy she could hardly stand.

She reached in the dark for her purse, which held the drug she so desperately needed—insulin. She rummaged through her makeup and car keys, fumbling until her fingers encircled one of the cool glass vials. Merely looking at the bottle filled her with dread, knowing it held the medicine that had become so hated. She drew back the syringe, her shaky hands measuring out just enough to pull her back from the edge of a diabetic coma. Never a full dose, never enough to feel well…

Without proper treatment and insulin dosing, diabetics are at risk for heart conditions, damaged kidneys and visual problems… and ultimately, death. Sadly, this was the ultimate price paid by Matthew, my friend Melanie’s 38 year-old brother. He died just a few short weeks ago, after falling into a diabetic coma and going into cardiac arrest. His heart was strong, and ultimately revived… but the lack of oxygen cause irreparable brain damage. Matthew was gone, and after deliberation and grief, the family made the painful decision to remove life support and donate Matt’s organs.

At the time, they didn’t know yet that Matt had diabulimia. What they did know, was that his Type 1 diabetes had been recently raging out of control. He’d been in the ICU several times in the period of about seven months. He lived alone, in the city, while his wife lived in the home they shared in a rural part of Illinois. It was unconventional, but this was worked for them. Perhaps part of why it worked for Matt was that it gave him privacy his disorder craved. We will never know for sure.

When his wife went through his computer, she discovered dozens of bookmarks linking to sites about diabulimia… and suddenly, the mystery of his relatively dramatic weight loss and frequent visits to the hospital was solved.

Lanie is beside herself. She knows eating disorders all too well, having struggled with one of her own. I know she feels like she should’ve known, somehow. The reality is, though, that even if she had known, Matt might have fooled her into thinking he was fine. As is the case with bulimia and anorexia, diabulimia has its secret tricks to fool those who care. The article mentions one of the women featured dosing her glucose testing strips with alcohol to falsely lower her blood sugar by hundreds of points. Since diabulimics eat, and often have hearty appetites but do not (generally) purge their food, it’s hard to blame the more known, traditional eating disoders… and most people don’t know about diabulimia.

I was one of those people myself, until last Friday when Lanie told me about Matt. I have since discovered several groups to raise awareness on facebook, and have joined those groups. Those of you who have facebook, please consider doing the same thing.

If you know someone with Type I diabetes, and his or her behavior suddenly becomes odd, or they are losing a lot of weight, try to ask questions. Try to raise awareness. Talk to friends or family members who can help.

I know that Lanie loved her brother dearly, despite the expected sibling differences they struggled through. Her mother is distraught over having lost a child, something no parent should ever live through. My gift to Lanie and her mother is this blog post… a chance for Matt’s struggle to turn into a legacy that can help others get the help they desperately need. It’s such a small gesture in the face of so much anguish, but it is the most I can do.

Please, pass along the link to this post to anyone who might know anybody that needs help with this frightening condition. Those of you who blog about ED, if you feel it is appropriate, please link to this post as a way to help raise awareness.

Let’s help Matt’s death not be in vain, and pass along some sense of peace to his grieving family in the process.

xoxo,
Juliet