Diabulimia. My Story. 10/2/11

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#1

This is an uncomfortable subject for me. It’s an embarrassing subject for me. I’m not sharing my story for attention. I’m sharing my story because there were so many signs I had and no one knew about what I was doing, not even my husband or my mother or my best friend. They didn’t know there was a name for what I was doing. All they knew was I wasn’t taking care of myself. They didn’t know I was ultimately making myself sick to lose weight. They thought I was just in denial and probably thought I had just had enough with diabetes. I know I lead them to believe this. I was ashamed. No one knew. No one. This is why i feel it’s that much more important for me to discuss openly. This is something that has directly affected my life and well being. It’s why I have some of the diabetes complications I have now. It’s something I’ve struggled with for years following my 1998 Type 1 Diabetes diagnosis. It didn’t get bad until the end of my senior year in high school. The “it” I’m referring to is an eating disorder called Diabulimia. I struggled with this debilitating action for years without even knowing what I was doing had a name.

Diabulimia: occurs when a person with type 1 diabetes intentionally manipulates their insulin doses or completely omits the insulin all together for the sole purpose of losing weight and/or keeping weight off.

What happens is this:
When a person skips taking the insulin injection, it puts the body in a starvation state, resulting in a break down of muscle tissue and fat, eventually turning into ketoacids, rendering your body full of toxic acids. While all this is occurring, the body is unable to process sugars that have been consumed or that have been excreted by the liver. Just FYI, a diabetic can eat nothing all day and still have elevated sugars because of the liver secreting glucose.
So, what happens to the sugars in the body? Well, they’re excreted in the urine rather than being used by the body for energy or being stored as fat. All this happening is what can eventually lead to a life-threatening illness called Diabetic Ketoacidosis.

I was put in the hospital a couple years ago due to falling victim to diabetic ketoacidosis (some of you may remember). See, here’s the thing; I knew what I was doing was bad for long-term diabetes related complications. What I didn’t realize, due to my lack of knowledge and ignorance was it could take my life at any moment and that I could drop dead right then and there. No clue. I mean, I was doing this for years and was never put in the hospital for it. This is why I’m sharing my story. I had never even heard of diabulimia and diabetic ketoacidosis. Never. That’s unacceptable. If you’re a parent or a friend of a type 1 diabetic, it’s truly important to know the signs. So, what are some of the signs? Here are just some of the ones I had:

Nausea and Stomach Cramps (I was throwing up a lot from the nausea).
Drinking an abnormal amount of fluids
Severe Fluctuations in weight/ Severe weight loss/Rapid weight Gain/Anorexic BMI
Early onset of Diabetic Complications particularly neuropathy, retinopathy, gastroperisis & nephropathy
Anxiety/ distress over being weighed at appointments
Lack of BS testing /Reluctance to test
Over/ under - treating Hypoglycaemic episodes
A fundamental belief that insulin makes you fat
Assigning moral qualities to food (i.e. good for sugars/ bad for sugars)
An encyclopaedic knowledge of the carbohydrate content of foods
Avoidance of Diabetes Related Health Appointments
Loss of appetite/ Eating More and Losing Weight
Recurrent episodes of Hypoglycaemia
High HbA1c
Frequent trips to the restroom to either urinate or throw up from nausea

So many years I felt so alone in my fight against this disease. Like I was the only one in the world. I can’t express enough how grateful I am for the DOC (diabetes on-line community). Sites like tudiabetes, sixuntilme, etc…the list goes on. I love having the support of my family and friends, but, sometimes you just want to speak to someone who truly understands. Who’s going through what you’re going through. Diabulimia continues to be a struggle for me as far as the thoughts go, but, every single day I conquer it.

#2

Its a good thing you shared this. I dont have it but i bet alot of people on this website are going through the same thing as you but is scared to tell their story. By you telling your story mabey other people like you will get the courage to tell their story

#3

This is something that no one talks about. I’ve had some great doctors and educators. Not one of them knew… just labeled as “non-compliant.” I still struggle with these issues from time to time, but my “recovery” has mostly been self-directed and through using the support from online in the DOC and from my friends and family.

I would love to help people struggling with this disease one day. It is terrible and so costly… how much do 4 stays in ICU cost? Probably close to $100,000 or more. Not to mention the costs of avoidable complications like you’ve mentioned. Diabulimia is diabetes, denial, depression, and body image issues all rolled into one destructive package.

Thanks for sharing your story and we can only hope that it helps others like us to get help.

#4

Brave to share your experience. Kudos for your strength in working through diabulemia!

#5

Thanks for sharing. I was dx in DKA and still remember the ‘free’ weight loss in the time before I collapsed dramatically. When I woke up in the ICU, there were tubes and needles coming out of every part of my body (including places where I didn’t think it was possible to have a tube or needle coming out) and I was shown the wikipedia entry about DKA. Including the statistic that 5% of cases are fatal.

Hang in there and keep fighting.

BTW, an encyclopaedic knowledge of carb content is a very good asset in the daily diabetes routine!

#6

Thanks everyone. And kphil06, you put it perfectly! There was so much more to say as far as what I went through with diabulimia, but, it was just way too much to write! I would love for more people to share their story. Especially people who have recovered and to know what it was that helped them recover. What helped me was being put in the hospital and almost dying…not to mention the whole year I had to pay the hospital for balancing my body out internally. That scared me straight. I’ve always wanted to live, I just wanted to live skinny and not do the work.

#7

Wow, all through highschool I had went through the same thing and than in the end of my junior year i went into DKA. I feel like ever since i was diagnosed with diabetes when i was 8 i have felt like insulin makes you fat. I have never went onto online communities for my diabtes, and im glad i did because i dont feel alone now. I didnt know that it had a name either until i just read your story. Thank you for sharing your story and stay strong!

#8

Though admittedly it doesn’t have the same impact on men in regards to stereotypical gender roles, body issues, self esteem, etc, men can experience this as well. Like Tricia and others, i inadvertently lost quite a bit of weight due to this before i knew what was really happening. You have my respect for speaking out, and i wish you well moving forward with your control!

#9

Thank you for bringing attention to this. I have delt with this since 1985. I have several serious complications from diabetes which i will never know for sure if they are from having diabulimia but the thought haunts me all the time. I can no longer work. Id love to write more but i get very upset and anxious just writing about it so I encourage others to write and i will continue to read. and maybe somday i will have the courage to write more!

karen

#10

As a parent of a daughter with this disease, I worry about this at times. I don’t know if she will have problems like you did, but I worry about her hiding food and feeling she must. We do not deny he r all the timebut may encourage her to wait or just like any “regular” child we may just say no. I am concerned now that she is in her teenage years, she is worrying about her weight and something like this may happen. Thank you for sharing your story and outlining more of the things to look for.

#11

momwith3. please intervene with your child asap. do what you can. i wish my parents did. i have severe gastroparesis from all of this up and down sugars. i lost the ability to digest food and had to live on a feeding tube for 4 years without being able to eat or drink. then in 2004 i had to get a gastric pacemaker in my stomach. i am in the ER almost weekly to this day and i am 43 years old. it started when i was 17. i look fine but when im sick im not fine. its such a horrible thing. get the physchiatric help your child needs now. if youd like to speak more privatley about this i am here for you, shoot me and email in my inbox. karen ps… that is all wrapped up neatly in a couple little sentances. but its been years of feeling like hell and in and out of the hospital and being judged and so much more that i dont wish on anyone. a good book that one on my phsychologists wrote is called… diabetes burnout by william polonsky. another one that i picked up but never finished but it seemed good was LIFE WITHOUT ED… (eating disorder)

KAREN

#12

Thanks for the reply Karen. I am so sorry you are going through all this. This disease is unforgiving and during the teenage years we do not always see the consequences of our actions. I hope to try and help Kelly see the reasons for not hiding food. So far we have not had too many major consequences from this behavior, but I will be monitoring it closely. I wish you well and I will try to get a copy of the books you recommended. I appreciate your help.

#13

Thank your for sharing and bringing awareness to “it”, we don’t hear a lot of talk about diabulimia, it’s kinda taboo. Hope things will get better for you. Take care!

#14

It is such a scary temptation to have T1D in a world where being size 0 deems you beautiful. I hope to never give into it or see younger girls face that same horrific decision. Thank you for your words.