Hello Everyone,
I am writing a research paper on diabulimia and am trying to gauge the diabetic community’s response to it. Diabulimia is a disorder in which a diabetic deliberately take less insulin than required for the purpose of losing weight. Even if you’ve never heard about it until this moment I’d like to hear what you have to say.
Parents, do you ever plan on talking to your T1 about this issue?
I would really appreciate all kinds of responses so please don’t be shy!
One can lose weight by taking in fewer calories and exercising. No one wants high blood glucose with resultant complications.
This wins the Strange Reply Award.
Yes, I’ve heard of this Sad/Life-threatening condition although I haven’t looked into it thoroughly. I’m not sure how a Person can mentally think they are over-weight when they are skin and bones. I do not understand unless they were told continually that they were fat starting when they were Very young? Or perhaps they have a defect in their brain( thinking) pattern, from some unknown cause?
I’ve been a Diabetic since I was 3 yrs. old, so of course I went through the puberty and teenage years. When I was 14, I saw a photo of one of my Best Friends and I, taken at her place and I realized that I had gained weight(15 pounds to be exact). Sure I didn’t like it, so I went to work getting back into my athletic activities and not eating the fattening foods, especially in the hs cafeteria. I successfully got back to my healthy weight.
At that time, I hadn’t heard of not taking your Insulin to lose weight(Diabulimia) but even in my rebellious state(Teenager and Diabetic), I do not think that I would have stopped taking my Insulin. I understood that I would die without daily Insulin and I was looking forward to and planning for a Decent future alive not dead.
On an off-note, one of my Cousins does suffer from Anorexia. That’'s Bad enough. Thankfully she does not have Diabetes.
I am trying to recover from diabulimia. Do you have any specific questions about it? You can message me or whatnot.
I think that diabetes, unfortunately is a set-up for eating disorders in anyone prone to them because it necessitates nearly obsessive attention to food and feelings of deprivation which are strong in children and teens who want to do what their friends are doing and are in the pre-puberty and puberty stages where focus on appearance is so intense.
I also think there is as much ignorance about diabulimia in the diabetic community as there is about eating disorders in general in the community at large. I don’t think Leo’s response is unusual. Just as people who have one beer on a hot weekend afternoon don’t understand why people will abuse alcohol, people who have never experienced or seen an eating disorder up close thing it pretty strange “weight loss behavior”. When in fact it is only partially about weight loss. I have 17 years recovery from an eating disorder and was diagnosed with type 1 diabetes later in life, only 4 years ago. There is no doubt in my mind if I’d been diagnosed when I was younger I would have ventured into diabulimia and given my general self destructiveness when I was young probably not survived. Following my own recovery I worked with others with eating disorders and I teach about them as well. Just as I see a real need to educate the community at large about the huge problem of eating disorders especially in the U.S., I do see a need to educate the diabetic community about diabulimia. I think this could come from diabetic educators and doctors working with young diabetics, and support groups and diabetes camps would also be a great place to talk frankly about the topic. Eating disorders are often a disease of secrecy and shame, so the more the issue can be talked about the better. Parents of young type 1’s could also learn about diabulimia and both talk with their children and watch for possible signs.
Hello:
I have been type 1 for 57 years and many, many of my teenage/early adult years were spent staying slim by withholding insulin. There was no technology out there with no meters or anything. My doctors were particularly mean to me by saying if I didn’t control my diabetes I would be blind, loose my kidneys, loose parts of my limbs. One doctor told me that I would never make it past 30 years-old. Well I am now 60 !!! I honestly used to think - its NOT going to happen to me. It was soo important to be slim and good looking, I knew I was kind-of in a permanent “keto-acidosis” state. I was always tired, irritable, felt nauseous - BUT I looked good! Whenever I was taken into the hospital for “hydration” I would put on at least 5 lbs and as soon as I got out of the hospital and not being “policed” I would purposely withhold insulin, put my blood sugars way too high, and would see the “water-weight” coming off of me. No one could convince me that I was harming my body. It wasn’t going to happen to me. I was invincable.
I think in this day and age, with all the technology out there, you take time to explain to the young people what can happen if you purposely withhold insulin and walk around with high blood sugars. Alcohol was a “curse” too. I walked around with the belief that my “kidneys would filter it all out of my body”.
Thankfully I am OK. I have a few complications, but nothing too serious. I just wish that when I was younger there were people out there who would take the time to educate me on what I was doing to my body. Mother’s, brothers, sisters, cousins - everybody needs a “good education” on diabetes and all aspects of it. Sheer ignorance and stupidity can cause serious side effects, complications. There was tremendous pressure to be just “like the other kids”, to be popular and slim, and never admit that there was “something wrong with you”…Well having D is sometimes a good excuse to eat healthy and live a healthy lifestyle. I will say to anyone out there, who is diabetic, educate the other non-diabetic people out there and also help to educate the diabetics who are in denial.
I will say at some point I did wake-up and smell the coffee and if you don’t think it will happen to you - it will. Do not be in denial.
Take care of yourselves
Sheila
this is a very important issue that I don’t think gets addressed enough in the diabetes community or by our endos. The diet, exercise, meds routine does make us obsessive about what we are putting into our bodies. Diabulimia is a way to lose weight without exercising and by eating anything we want. The allure is there, and if someone is young they don’t necessarily have the judgement developed yet to not do this. When you are young, you think you are invincible, especially if you’ve never had any illnesses before getting diagnosed. I went a whole summer without much insulin and eventually went into DKA and almost died. I lost about 20-30 lbs to the point where you could see my ribs. I don’t think I was intentionally doing this to be thinner, but it was a nice side-effect. I was in college at the time and was fitting into cuter clothes, donning a bikini, and getting more attention from boys. After my DKA experience, I buckled down and started a serious regimen with the help of docs up at Joslin in Boston. Since then, I have been on a Type I roller coaster ride, going into DKA three more times and going months sometimes without testing. Then I grew up and started taking care of myself better. I want to be around for a while and this whole diabetes thing isn’t all so bad, is it?
Yes, I struggled with this during college, although I was not aware of the term until much later. I don’t know that it was full blown, but I definitely had body image issues from diabetes (swinging from the extreme thin of diagnosis to normal and up through the “freshman 15”) as well as two close friends with “normal people” eating disorders that fed into an unhealthy mindset. I also was on an insulin pump (which was not my choice) that would easily tell me exactly how much insulin I had taken. It was easy to manipulate how much insulin I would take and much more hidden than others struggles with eating disorders.
I wish I had a support group like this and access to others struggling with the same issues back then. I think it could have helped me deal with all of the emotional struggles that were related to diabetes. Diabulimia is scary and dangerous. I agree that the control that helps PWD manage the disease also feeds the perfectionist tendencies of an eating disorder. After all, aren’t we all striving for perfection, whether it be an A1C or weight? It can be a slippery slope.
I definitely agree that this issue is not spoken about enough! It makes me so angry sometimes. Women with diabetes are 2.4xs more likely to develop an eating disorder than non-diabetic women because our disease forces us to be obsessed with what we eat. Unfortunatly, I think insulin manipulation (whatever the reason) is more common then the diabetes community lets on. I’m very glad that you were able to pull yourself out of that cycle. I have had issues with diabulimia for over 8 years now and am trying very hard to get treatment for it. I am lucky that in spite of over 20 DKAs (I’ve lost count) I have no long term complications, but I’m really not trying to push my luck here.
Thank you so much for your response.
Hello I actually run a charity dealing with this issue, I will PM you the web address and my email
Thanks so much!
Just out of curiosity what kind of charity deals with diabulimia?
Wow I didn’t know this had a name. I guess this is what I was going through when I was a teenager. Unfortunately I would be good for a couple weeks before my doctor appointments and even let my sugar get real low to throw off my A1C, then as soon as I got home I would down a regular soda thinking high sugars would start the whole process. Strange thinking back then I guess, but I like to blame it on my age. Anyways, I have been on a pump now and haven’t done that in quite awhile. Thanks for the info!
Diabulimia is sad and scary. And not surprising. Like Zoe said, ALL type 1 diabetics have to pay obsessive attention to food – that’s what you have to do to calculate your insulin dose, and stay healthy.
Hang in there! You’re worth the fight!
Maurie
As a parent this subject scares me to no end. My daughter is a T1 and in high school. She’s a cheerleader and is already very body conscious. I don’t want to be the one to introduce the subject to her because I don’t want to give her any ideas. After reading what some of you had to say I may have to give that a second thought…
As a teenager I worked as a counselor every summer at a camp for diabetics. I quickly learned about this at camp, but we didn’t call it that. Girls usually called it the best and easiest way to lose weight. At camp, we dealt with it a lot, primarily with the girls. Back then (mid 80s to early 90s) it was primarily ages 11+. I stuggled with my weight as a teenager, and one of my diabetic “friends” at camp endoctrinated me into how to lose all the weight I wanted. I cannot say that I did not consider it, because I did. But I truely did no want to end up with complications, so I never used this way to lose weight. Now, 28 years after my diagnosis, I have every complication imaginable.
I only knew of 1 guy who did this, and he admitted doing it. It was the way he “made weight” in high school wrestling.
I don’t plan on mentioning this to our teen yet because I don’t even want to give her the idea that it is possible to do this. However, I hope she does not pick up this idea from diabetes camp. She has always been thin but she definitely wants to remain on the thinner side of normal. She is very responsible about her health and constantly checks BS when away from home; which is good. Parents should be alerted about the possibility of this but this issue is getting too much press. With the result that teens at risk are more easily able to find out how to do this. Unless, this has been common knowledge…??
A few years after I’d been diagnosed (at 23) with T1, I met someone who told me of a diabetic friend that would let her blood sugar get high when she wanted to shed a few pounds. My first thought was that this friend was destroying her body, probably constantly exhausted, suffering from insomnia and potentially killing herself; my second thought was “what a great idea”.
I’d never been thin (never heavy) until the summer I started magically losing weight (due to as of yet undiagnosed diabetes), but had never had many body issues and accepted my weight and body the way it was. But the attention I got when I was thin, the way clothes felt, and the general the praise that comes along with being thin warped my mind. Along with Zoe, I KNOW that if diabetes had struck me in my teen years, or earlier, I would have definitely become diabulimic. I remember looking in the mirror the night that I was admitted to the hospital, right after they had diagnosed me, brought my blood sugar down for the first time in what was probably 6 months or more, and rehydrated me with saline. I was devastated at what I saw. I was “fat” again. Now, I think to myself, “SERIOUSLY???” What I was seeing was that I wasn’t malnourished and dehydrated anymore. It seems such a fine line between being “thin” and being ill. No one that summer (save my family) ever mentioned that I looked like I was knocking at Death’s door.
There is a truly complicated and obsessive nature to controlling diabetes. Between managing meals, excercising, checking bg, dosing, correcting high bgs, and keeping A1Cs in line; it’s a constant obsession with which foods you’re eating and how well you’re managing that food in your system. In a lot of ways, it’s easier (and the idea alone just made me heave a wistful sigh of relief) to chuck the whole system and enjoy being thin. But that’s such a dark and dangerous road to go down. Now, I’m just a little bit overweight – with a bit of 'betes pudge – but happy.