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!

Tags: T1, controversy, diabulimia, insulin, issues, manipulation, study

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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.

Your story is so common -- and so very sad. Too many people will give you lots of compliments for losing weight, without every wondering or seriously inquiring HOW or WHY you're losing weight. There is tremendous pressure to be thin with little thought given in the moment to all the dangerous, unhealthy things that can make people suddenly thin: bulimia, anorexia, cancer, undiagnosed or untreated T1, clinical depression, etc.

I remember the summer (when I turned 14) when I simply...stopped eating.

I got so many compliments, people telling me how great I looked.

No one noticed or inquired into the fact that I was eating maybe 200 calories per day -- literally starving myself to near-death. But I was thin! That was all that mattered. Fortunately for me, after loosing about 40-lbs. (about 20-lbs. underweight for my height) my body rebelled and I couldn't keep it up into full-blown anorexia. Thank goodness for a strong survival instinct.

I am a type 1 who struggled with this for 4 years. It started very accidentally. My blood sugar was running high and I started loosing weight. I was like "bingo! I want to lose weight and this will be so easy." And so I started withholding insulin and eating anything that I wanted to. I hid what I was doing as best as I could from everyone in my life. Thing became a little more apparent to people as I started losing massive amounts of weight. I probably lost 50-60 pounds over the 4 years. I was down to a size 2 and I had never been thin. I thought I looked great. People around me started to think I looked like death walking around. I couldn't see it. I was hospitalized 5 or 6 times in those years. One of the times I was so dehydrated that I needed a central line for fluids and when the doctor put it in, I had no flash back of blood. He said I was the most dehydrated patient that he'd ever had (at a major trauma center). I got married and promised my husband that as soon as we were married I would take care of myself. The day of our wedding was the last time that I missed a dose of insulin. In the process of "fixing" myself, I have gained quite a bit of weight. It has been a struggle to deal with but I have stuck with it. I've realized that I'd rather be fat and happy than thin and dead because I'm sure I would have died by now. I think that this is something that no one wants to talk about but it should be. If you want to know anything else from me or about me please message me.
I have considered doing this on many occasions but fortunatly common sense has taken over. It is tempting to kick yourself into ketoacidosis, and drop 10-15 pounds in 2 weeks without doing anything! What has stopped me is the constant high sugars that would make me feel horrible!

i agree, running high all the time would feel terrible. i'd never cope at work. I mentioned this once to the diabetes nurse about how easy it would be and she got tears in her eyes. she was so upset, that someone would do that. she made me promise i would never intentionally skip insulin. scary stuff, im well aware of what couold go wrong, ive seen it, i dont wanna risk that!

When I was having a lot of trouble with my breathing this past fall -- and my doctor pretty much told me that after all the tests, she thought it was strictly my weight that was the problem (it wasn't, but that's another story) -- this set off a brief period where I was kind of flirting around the edges of diabulimia. I would calculate my insulin needed and then inject half or 2/3 of what I ought to have injected. The thought/feeling was, "I can't inject so much insulin! It's making me gain weight!".

After a few weeks of doing this several times per week, I snapped out of it.

I think it can be dangerous for medical professionals to just blame people for their weight -- or tell them that their weight is the cause of their health problems -- without AT THE SAME TIME working with them on a healthy plan for weight loss.

As an obese T2 on MDI, what works for me is to cut way, way back on my carb intake (of course), eat as close to a all-natural, all-organic diet as possible and walk an hour every day. That way I NEED less insulin. I don't need to keep eating what I was eating and cut back on the insulin required to cover it. That way lies madness and diabetic complications!!!

I am glad that I had heard of diabulimia and understood it -- this knowledge helped me realize what I was doing and nip it in the bud before the behavior got too entrenched.

I was diagnosed with T1 at age 10. I can honestly say that it never crossed my mind to reduce insulin to lose weight, even when I was a teenager. That is not to say that I didn't have my own issues with bloodsugars and food. But I think it was partially due to the fact that I have been very lucky to never have weight issues, but also due to the fact that my parents were very on top of my diabetes care when I was young. Also, the thought of all the complications that could happen made me too scared to attempt something like that.

I had my own issues with food/weight before I was dx'd T1. I am doing much better because I eat very low carb, so I keep my insulin usage down that way...but I think about skipping boluses all the time. I have high autoimmune markers for hashimoto's (hypothyroidism) and lately I haven't been able to lose a single pound. I have a bit more body fat than usual, which is really distressing for me since I'm used to being on the thinner side. The call to restrict my insulin at the expense of my blood sugar control is getting stronger, but I'm still resisting. There have to be better ways! I don't want complications, and I keep telling myself that every day.

Tressa

Please visit my website www.wearediabetes.org for a ton of resources on diabulimia. I am the founder of this organization and would love to help you. Please feel free to email me at ashabrown.wad@gmail.com :)

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