Diabulimia is an eating disorder that affects teens with diabetes because it involves reducing or eliminating the intake of insulin, the hormone necessary for cells to function. Diabulimia, like all eating disorders, is dangerous and potentially deadly. It puts teens at a higher and faster risk of getting complications from diabetes because of the constant high blood sugars caused from lack of insulin. Diabulimia also causes frequent ketones, which is a toxin that can land a person in the hospital. Many teens reduce or eliminate their insulin intake because it helps them to lose weigh, but like most “tricks” to losing weight, it can have serious and even deadly consequences. The effects of diabulimia can start almost immediately, with ketones causing a person to become very sick. After awhile, other long-term consequences will start, including kidney disease, blindness, heart disease and stroke.

     The best way to lose weight without cutting down on insulin is to talk with a nutritionist and a physical trainer to work on healthy diet and exercise plan. Physical exercise can naturally lower your insulin intake by making you more sensitive to insulin. Work with your doctor or your diabetes educator on a plan that will help you lose weight and prevent your blood sugars from going out of range for long periods of time.

How long have you been diabulimic? Do you remember how it started?
     I'd say that I've probably been diabulimic longer than I realized, but didn't really know what I was doing to myself.  Even though I was anorexic first, I'd say that I started restricting insulin several years ago. It's hard to pinpoint the time exactly. At least five years. There are many reasons I started to do this, but it was mostly about the control.  I couldn't control the fact that I had a dysfunctional family, a depressed dad, a mom who wasn't around a lot.  I couldn't control the fact that I had this disease, but I could control my food intake and my insulin levels.

Did you know that this was dangerous? 
     I don't think I really acknowledged to myself how terribly dangerous this whole thing was.  I mean, it's so deadly.  I was playing with my life every day.  I wish that this never started-- that I never started restricting and playing around with insulin.  I'm sure I've already done some permanent damage.  But this was a way I coped with the daily stressors I dealt with. I was depressed and unhappy and needed some kind of control in my life.  I never realized it would turn into such a mess. I mean, the risk of complications is just enormous when you start restricting insulin, especially for the purpose of losing weight.  I was also struggling with anorexia, and then bulimia.  All are very harmful.  I don't understand why I have hurt myself like this, but it really was a way of coping for me.  There were so many things going on in my life that I couldn't control, but oh yes, I could control this.

Did anything physically start happening to you, besides losing weight? Like ketones or hospital visits...
      Yes, things started happening to me physically (But they were also a result of the other eating disorders).  I actually can't say that I developed ketones, but there were hospital visits.  Mostly tons of doctor visits.  My Endocrinologist insisted that I get help.  I needed Psychological help too.  I started seeing a therapist, but it's really really really hard to meet a therapist who understands how diabetes and an eating disorder can be so related and often times, a therapist will presume you're doing something because you're diabetic, even if you're really doing it to lose weight or for a different harmful reason. I started losing tons of hair.  My skin was incredibly dry. I was constantly cold. I developed osteopenia. Basically, I am in the early stages of osteoporosis. I had VERY high HA1C  [hemoglobin A1C] levels. I didn't menstruate for almost three years, which is actually really bad for your body. I wasn't producing estrogen. My electrolytes were all messed up.  I had constant cramps from lack of potassium.  I'd wake up in the middle of the night literally screaming in pain. And my uterus shrank to three times the size it should've been. I also got heart damage.  My valves started to leak.  Fortunately, it was able to repair itself over time.  But my heart looked like that of a really old person.

Do you think your other eating disorders were aggravated by your diabulimia?
     Yes, I think so.  I think that my other eating disorders kind of went hand and hand with the diabulimia. I started becoming very obsessive about giving insulin.  It was all consuming. Basically, I just did more damage to myself with the diabulimia.

Why do you say that?
     I mean, it was just another way to harm myself. And only diabetics can do that. And it’s really sad how we can harm our bodies. I think a big issue of mine was that I felt worthless. I was very insecure and had low self-esteem.

Were you ever worried about the consequences of what you were doing?
     Honestly, it's hard having a disease like this.  I didn't want to admit that to myself.  And so, I never expressed my emotions about how difficult it was for me and how alone I felt about it.  I didn't know any diabetics really.  I felt ashamed of myself.  I felt worthless.  I felt that I deserved to suffer.  And that is so untrue.  What's so important for teenage girls that are diabetic and considering doing this to themselves is to realize that they are a human being worthy of living a happy, healthy life.  If people get the urge to play around with such a deadly matter, they really need to talk about it with family or friends, and see a counselor or therapist. This will kill you. Nobody deserves to suffer. I denied the consequences of what I was doing to myself.  I shoved it aside.  I didn't want to think about it.  I was too consumed in the eating disorder and diabulimia. I mean there's a reason why you get diabulimia. Why you start hurting yourself in such a manner.  I think sometimes people just don't know how to deal with life and turn to harmful things.  When I was really stressed, I'd really become obsessed with insulin levels.  When I was depressed, I was the same way.  It was something I could control.  I think people need to know that it's not their fault that they become diabetic.  It's not their fault that they have a disease.  They don't need to make themselves suffer.  Like I said, I felt really unworthy-- like I deserved diabetes.  And that was totally untrue.

When did you realize you needed help? What did you do first?
     It's interesting.  I didn't really realize what I was doing to myself with the diabulimia for a while. But I knew something wasn't right with me-- that I was using these harmful tactics to deal with life. I felt crazy, but I couldn't stop. I really realized I needed help when I saw an Endocrinologist who basically told me I was in really bad shape. And that I was so fearful of giving insulin. I realized I had become obsessed. I didn't realize that it was its own disorder in itself-- diabulimia.  This is a relatively new term.  I just thought it was part of my other eating disorders.  Then I realized it was a different matter-- restricting insulin. I started seeing a therapist. But the problem is, most therapists don't understand this disorder.  They're not typically that knowledgeable of medical stuff. So that was a problem for me. And I continued the behavior because of it.

Where did you eventually go?
     Well, stuff was getting really bad, so I entered an Eating Disorder Treatment Program at Dallas Presbyterian Hospital. They ran tests.  Saw my HA1C was high-- and they took the control away from me!  They started monitoring my diabetes, insisting I give certain amounts of insulin.  It was terrifying, but very good for me at the same time.  They were trying to save my life. Because it was a medical facility, they were able to understand the issues much better.  They understood that I WAS restricting insulin and doing these damaging things to myself. I was monitored 24/7. I did start working through the issues.  It was really tough.  Constant therapy.  Coming out of denial. Seeing how harmful and deadly this whole thing was. Seeing that I was a worthy person and I deserved good health. And that there was no reason for me to be harming myself like this. I still struggled, but treatment really helped. Because the problem doesn't just disappear and go away. It's pretty engrained in you. It becomes a habit, an addiction. And it's very hard to reverse that.

How are you working to stay healthy now?
     I'm trying to do the right thing and treat my body well by giving the amount of insulin I actually need when I eat. I'm trying to get my blood sugars in control. This is such a long process.  I'm really just trying to take care of myself. And that's what I hope people doing this to themselves realize-- they need to take care of themselves. They are worthy of good health and love. They don't have to suffer and that if they are considering doing this to themselves-- or already doing it-- they really need help, and they're worthy of help. Having type 1 diabetes isn't easy. But you are worthy of seeking help if you are suffering!!