Diabulimia -- My Story

Editor's Note: This article was originally written by community member Tressa.

There's a picture that I keep in a folder in my computer.

I take it out to look at time to time, and although I know the girl in the picture (me at 8th grade graduation), I don't recognize the face that stares back. My eyes are sunken in, collar bone protruding because I'm so emaciated -- I'm a walking skeleton.

And to think that when that picture was taken I thought I looked incredibly overweight. It was two days before my first of what would be six DKAs (diabetic ketoacidosis) in a course of two years

I hadn't planned to write about this just yet. I was going to wait and planned to write about this after a few more blogs -- but since it seems to be circulating around now on this site and in the media as well, I thought that maybe I should share some insight in the dark and twisted life of a diabulimic.

From what I've been reading, it doesn't seem that anyone has really experienced "diabulimia" firsthand -- and honestly this is the first time that I've ever sat down to write about the years that my life were affected by it.

I guess I can't really pinpoint when it all started; it's not like I woke up one morning and thought, "I'm not going to take my insulin today because I want to be thin." in fact I didn't even know that by not taking insulin you could lose weight.

At first I didn't even realize that I was losing weight. It was more like I would put off taking my insulin because I didn't want to inject myself at the lunch table or something like that, and then I'd forget. I didn't put two and two together until the doctors asked me if I was purposely missing insulin to lose weight.

Before that I was doing my best to remember every time, because that's just the way it always was: I just had to take my insulin. When I learned that the reason behind my losing weight was because I was missing insulin, I knew that meant that the moment I started taking the insulin I would gain the weight back. And so the "diabulimia" began.

I was never particularly thin. It's just the way my body is shaped. I carry virtually all my weight in my stomach -- since the day I was born it's been that way. I never really had that great of self-esteem growing up because of it.

Let's face it -- kids can be mean, and I was just an awkward kid so I was easy to make fun of.

So when I started losing the weight it was just too much of a temptation. I found a way where I could eat as much as I want and (so I thought) not have to worry about it. I guess I didn't realize what would happen to me because I had never been in DKA before.

I remember the night before my first DKA. I had to go watch my brother perform in a play and kept trying to eat strawberries, but I felt so sick. I was so thirsty and all I consumed was water and strawberries. I got home and went straight to sleep.

I awoke in the middle of the night and I felt just sick. I knew I needed insulin but I had to use the bathroom and I needed something to drink and I couldn't figure out which one needed to happen first because I felt everything so intensely. I just kept trying to tell myself not to throw up; but that didn't work.

My mom eventually found me in the bathroom and by then I was too sick to move. I remember her carrying me down the stairs and putting me in the car.

The first time it happened it was easy to put blame into other things: My parents had gotten divorced two weeks earlier, it was the first night in my "new" house, I had forgotten my long-acting insulin, I had just completed 8th grade and was stressed out about starting high school -- the list just kept going.

After four days my doctors sent me to a psychiatric hospital, but I was only there for four more days because "diabulimia" didn't have a name and no one understood what was happening. Plus psychiatric hospitals aren't really equipped to deal with eating disorders, so basically they found nothing wrong with me.

My next DKA was a month later... so much for a nothing wrong with me.

Then high school started. I just began to believe that to be loved I had to be thin.

For a while people were amazed by the amount of food I ate because I was so small. But then my friends started to get suspicious. Every time after I ate I had to use the bathroom, so they begin to follow me to the bathroom, thinking I was bulimic. But I passed their tests -- I really only had to use the bathroom because my blood sugar was high and I always had ketones.

Then in November I was in DKA again. I missed Thanksgiving and was sent to the same psychiatric hospital, but this time I had to stay there until January. I don't really think that the stay there was helpful (and neither do my parents anymore), but there was something that happened while I was there that will stay with me forever.

There was another diabetic staying in the same hospital. I'm going to call him "Sam" for privacy reasons. Sam had been in and out of hospitals for years and had been in a few comas. His reason was that he was a foster kid and to get out of foster homes he didn't like, he'd go into DKA.

Then one day he and his roommate "escaped" from the hospital. I was very scared for Sam because I knew he didn't have his insulin.

Sadly my fears came true: on December 10, 2004, my friend was admitted into the ER and died that morning from DKA. The last words he ever said to me were "They say all these DKAs are going to kill us, but I don't think that's really true."

After that stay I told myself I would never skip my insulin again.

But when I went back to school that changed.

You see, while in the hospital I had gained a lot of weight. I was actually healthy-looking, but I thought I was obscenely overweight.

I just felt there was no other way but to stop taking insulin. I felt helpless and stupid because I knew what I was doing and I really didn't care, I just wanted to be thin so badly.

In March of 2005 I was in DKA for the fifth time. It took longer than the times before because the school has worked out a plan with my mom that if I didn't go to the health aide's office to take insulin during school then I'd get detention. There was more of a record being kept.

I stayed in the hospital for a week and then was back home. However it was mandatory that I saw a psychologist from then on.

I made it through the summer, but the skipping insulin was worse than ever. By the beginning of my sophomore year I was incredibly thin, but I was having trouble walking to school. I'd have to stop every five minutes to catch my breath and things just got worse from there. Eventually, walking across a room got too hard to do.

I always felt like there was never enough oxygen to fill my lungs or enough water to keep me from being thirsty. I would throw up in between classes, take some insulin, and then go to class like everything was fine. I didn't look fine -- teachers thought I was a drug addict because I was so thin and I had dark circles under my eyes. I slept all the time and I just wanted to die.

November of 2005 was probably the worst bout of DKA out of the six. My mom was out shopping and my boyfriend was over. I kept throwing up every five minutes, so he called my doctor who said "call 9-1-1" and he did. The problem was that my mom had lost her cell phone so we couldn't contact her, and when the ambulance came they brought me to a hospital I don't usually go to.

This hospital wouldn't treat me because I was a minor and they needed parental consent. But I started showing specks of blood in my vomit, and that's when the doctors decided to treat me.

When I was finally stable enough to be transferred to my normal hospital I was in pretty bad shape.

I was in the ICU, and it was the first time that they wouldn't let me get up to go to bathroom. Let me tell you something, it's quite embarrassing to be 15 years old and have a nurse that you know have to hold a bed pan underneath you.

When my mom got to the hospital they told her that she might want to stay because they didn't know if I would make it through the night. I spent 10 days and another Thanksgiving in a hospital.

After that I was determined to stay out of DKA. People really started to believe that I was getting better because I was staying out of the hospital. This was only because I was finding ways that kept me out of the hospital but still allowed me to lose weight. I misused my insulin and cut back on my eating. Every once and while I would throw up, and I still couldn't walk long distances. But staying skinny was really all I cared about.

Then on April 17, 2006 I found myself in DKA yet again. I didn't know it then, but that day would be a day that would change my life forever.

It was the final straw for my doctors and my parents. Everyone knew that if they didn't do something drastic I wouldn't live to see 20. At 16 I was already beginning to show signs of diabetic complications in my kidneys and my legs, and by that point my self-esteem was close to none. Every doctor was in agreement that if I went home and back to school the DKAs would keep occurring and the next DKA could be my last.

I stayed in the hospital for 54 days as everyone searched for some place that would help me overcome this huge thing that had taken complete control over my life.

A treatment center was found for me but it was in Virginia. It really looked like the only place that would be able to help me though, because it specialized in treating diabetics with "diabulimia." It was the only thing left in the attempt to save me.

On June 6, 2006 I said good-bye to my friends and my family and made my way to "Cumberland." I was very scared and angry at first. I felt like my mother had abandoned me and couldn't believe that I was being sent away.

Living there was strange. I had never really met so many other diabetics that were dealing with the same situation that I was dealing with, and it just made me feel like I wasn't alone in my struggle anymore.

The hardest part was when I had left Hawaii for Virginia, I promised my two best friends that I would be back. But after some soul searching and some help from my mother, I realized that unless I could really "start fresh" I would never be able to truly escape this haunting downward spiral I kept putting myself on.

So I decided to stay in Virginia with my dad. On August 31, 2006 I left Cumberland's doors for good.

Cumberland offered many different therapeutic programs, including individual, family, and group therapy. While individual and family therapy was helpful, I think that the most helpful for me was group therapy because before I had always felt so alone in the feelings I had towards what was happening to me and it was the first time in my life that peers felt a similar way.

So now I put the 8th grade picture of me away and look at my most recent picture; this is the face I know as mine. I'm smiling and I'm truly happy in this picture -- and I'm healthy.

There are some days that are harder than others, but as I'm sitting here now I've just completed my second Thanksgiving in a row that HASN'T been in a hospital. In April it will be 2 years since my last DKA, and I'm looking forward to a future that two years ago I never would've thought possible.

Editor's note: If you are struggling with an eating disorder, or believe a friend is, there are resources to get help:

From the National Eating Disorders Association, a list of eating disorder information.

Also from the NEDA, a list of resources, listed by state, where you can get help.

The Hospital Where Tressa Got Help: Cumberland

Article from Salon.com on diabulimia