Next week, on Supersize vs Superskinny (Channel 4, 8pm, Tuesday night) they are doing a feature on young Type 1s who reduce insulin intake and run high BGs on purpose to stay thin...  Pretty horrific - the girl they have on has lost the sight in one eye as a result....

I am currently researching into diabetic eating disorders, in particular diabulimia.  I am looking to speak to people who have any type of experience of this condition either first hand or possibly it effects someone close to you. I would be keen to highlight that I am in the initial research stages only and that all communication is in total confidence and does not commit you to taking part in the finished piece.

I first became aware of Diabulimia when a good friend of mine began to suffer from the associated symptoms. I still find it hard to understand why there is so little awareness about this disorder, particularly in the UK, and its very dangerous health risks. Researching into the subject I have begun to discover a greater understanding of not only diabulimia, but a deeper insight into actually being diagnosed with type 1 diabetes and the constant relationship with insulin that other people take for granted.
The aim is to spread understanding in a subject area in which I believe there is still very little awareness.  I am very keen that this is spread from the perspective of those actually affected and involved. In this way it is very important for me to speak to as many people as possible to ensure that the issues that you think need to be raised are given the opportunity to be and that the challenges you have faced are voiced.

I would like to emphasise again that I am in the initial research stage and that all communication with me is in total confidence and in no way commits you to taking part in the finished piece.

Should you want any further information please feel free to PM me

Kindest Regards

Karen x

Sounds like valuable research, but sadly I can't help you myself...

Good luck though!

Karen, i don't believe any of us on the forum suffers from diabulemia

perhaps the local diabetes clinic would be able to help you?

Having said that, Kate, there may well be people on the board who suffered from it when younger - those diagnosed when younger...  Like anorexia, I believe it plagues teenage girls in particular.  So those of us diagnosed as adults are less likely to have been hit...

Jen - I rather thought this was quite a modern phenomenon? but I don't know??

Dunno.  Like most of these things, it's probably been around for donks but only got a name in the last few years.

Tell you, when young and insecure, the thought of getting thin as fast as I did last summer might have been an attractive option!

To my everlasting guilt, I can recall walking down the road actually thinking "Oh this WeightWatchers stuff is so tiresome, now if I could just get diabetes it (the weight) would just drop off!".  At the time, all I knew about D was that it could make you lose weight, and then you took a pill and went back to your normal life - according to the one friend I knew who had it!  6 months later I regretted that wish, very heartily indeed!

There was a time long ago when I now know that I had an insight to eating disorders so for what it is worth here is my take on it.

I was in the military and we were being trained in E&E or escape and evasion. The whole story is quite funny and when I get the time I might blog it but for now, we were not given any food or water but had to make do or acquire. The long and short of it was that I went escaping to the coast of Denmark in winter badly clothed and with no resources at all. I did not eat for 3 days and only had a litre or so of water. What I discovered was this; the hunger pains came and then disappeared and never came back at all. [In later years after becoming diabetic, I now understand why this is - a natural physical response] I became weaker as I plodded along and the sheer mental function of keeping going distracted me from the  physical discomforts of blisters, chaffing and the unbearable cold.  I remember thinking that many others must have experienced this long before I was born and that many are experiencing this very same thing that very minute in many parts of the world.

I got to the end and we were all shipped back to base where we got showered and straight off to the tent that was serving as a cook-house. Then the strangest and most lasting thing happened, with a lovely 'flupsoup' in front of me, I discovered that I didn't want it. I didn't feel hungry, I didn't crave food but more interestingly, I didn't want it. There was no reason for not eating just that it seemed to be a chore and not something I wanted to do. Simple as that.

I did of course have the soup but that was all. Nothing else, it took me the following 3 days to get back to a normal eating routine. I have never forgotten my feelings and thoughts from that time and it left me utterly convinced that I had perhaps ventured into the realms of what we now refer to as an eating disorder.

Now jump forward many years [15 or more] and I have just turned diabetic. I went on a severe diet not just to loose weight - though there was little to loose it seemed a good thing to do  - but to measure my responses to this thing. I did loose weight and quite a bit but that was just a side effect [if you like] and was not the intention specifically.

My doctor thought I had developed an eating disorder and was concerned. I had gone to see him about pains in my thighs which prevented me from being seated for more than 15 minutes or so. I thought it was a re resurgence of my earlier back problem but as it turns out it was definitely not.

I had been steadily loosing weight and concentrating on my BG performance. I lost almost all excess body fat and had started burning the fats that line ligaments, tendons and nerve clusters that are located in the legs and lower back. That was the problem. I was sitting on no padding.

This is what happens when you loose weight excessively, you loose fats from places here it is needed and once that has gone you then start to burn 'brown fats' which can never be regained because you are born with them and that is it. Once that happens you are almost on the road to death from organ shut down and collapse long before muscles are completely eaten.

With these two events in my life [and I still battle with the last one - or the effects of it] I think I have a bit of understanding on how it works for some. Motivation to go down this road is very simple - FEAR. That is it.  There is no desire for anything, when all is cut away to the basics it is simply fear that provides the motivation to go this way. Once started and the normal physical balancing responses are passed, such as the initial hunger, there is no felt physical urgency for eating other than a general and slowly building weakness. Once at this stage, it is simply the mind takes over in that you have to be consciously determined to eat. So if you do not want to because there is an over riding fear of something then not to eat becomes really easy. After a very short while, it is normal.

In my case, I was generally weaker than before and that plus the pains in my thighs when sitting down, made it hard for me to work. Initially fear of diabetes got me on the starvation road but fear of loosing my employment got me out of it.

The key in my mind is simply fear - fear of what is the over riding question. For some it is simply not being the right shape but whatever the reason if this road is travelled too early in years before maturity of thought process is gained, then there is a great danger that this problem will stay with the individual as a learned mental process and way of thought, for the rest of their natural.

These afflictions are a direct result of the way we have allowed our society to develop. It hardly ever occurs in the 'developing world' where people starve not because they don't look good enough or measure up to some stupid fantasy image but because they have little or no choice.

Diabulimia/diorexia - bol****** I am sorry but I have very little patience with people who have an interest in 'working towards understanding' blah blah blah. I have met with and discussed many things with all sorts of people 'in the industry' who are 'working towards a possible solution or understanding' and not a single one had the faintest idea of half of the fundamental issues they are researching or the fundamental physiological mechanisms that are involved.

These are not NOT new diseases at all and why people persist in thinking along those lines is completely baffling. They are a manifestation of FEAR and that is the fundamental bottom line/common denominator. Anything else is total rubbish. So to anyone who wants to learn or understand more then I recommend studying psychology and mental health issues first.

Extract from elsewhere

Quoted Text

Diabulimia tends to start in adolescence and is more likely to occur in women than men.

If you re read above you will see that I no lie.

There are only 2 single and different motivators in life and all of us are born from the womb with them already genetically built in irrespective of sex. FEAR and PLEASURE. Every single living thing on this planet has this genetically imprinted. It what makes a baby instinctively suck its what makes you make the decisions you make throughout life it is how your brain functions it is how you learn.

Karen, if you want to learn more then start at the beginning. Every person develops differently as an individual and so we all respond differently to Fear and Pleasure. Diabulimia is not confined to T1's at all and it is definitely NOT a disease but a psychological condition. Forget the diabetes because I think that that is a secondary issue, a bulimic has psychological problems, a diabetic has physiological problems and a diabulimic has both. T1 diabetes is at present incurable. Bulimia is the main issue here and should be thought of as the main issue. The bulimic is using T1 conditions as a tool to further bulimic interests.

Hope that Helps

Pete


Apologies for the rant

Pete

That is the most sensible and understandable thing I think I have ever read about eating disorders.  

I know it to be absolutely true that you can quickly get out of the habit of eating if the conditions and your own mental condition combine to lead you to it and how, even though you know you need to eat, you just push it round the plate or have to do summat else whilst actually eating to take your mind off the sawdust - which you might just as well be eating - for all the enjoyment whatever tasty morsel is put before you, will provide.

Thank you!

Sedge, thank you. After re reading my babble above I think I sort of got a bit annoyed. Unfortunately that is my way, it's born out of impatience which is my nature  

I am utterly convinced that there are hundreds of diabetics out there all of whom have been close to or are close to eating disorder problems simply as a direct consequence of the desire to deal with their diabetic life. The biggest hurdle is that many are not very well read or educated on the things they need to be in order to even venture along the roads that some do. I believe there are many people out there yet undiscovered by the media who are dealing with this problem.

In my case, I do not think I have a problem but I s'pose that is arguable. However, I do think that I was on the road to it. I have just spent the last year trying to gain weight and have succeeded at the expense of my BG but as you might guess, I have not put it on where I wanted to. Duh but I knew that would be the case so I am now on my fitness cycle to trim the excess of my gut.


Pete

hi I'm Janine
I'v suffered with eating disorders for the past 12 years and i'm iddm, over the past 5 years i have battled with diabulima and i'm finding it a massive struggle recovering from it! Its been 3 weeks now since my last hospital addmisson for dka and i was very very lucky to still be here.
I know that there are thousands of diabitics out there who are also suffering with this terrible condition. People who do it are not stupid but lost lonely and very confused! As with all eating disorders i don't believe it is actually about being thin it goes so far deeper than that and its a battle with oneself every day.
I feel there needs to be so much more reserch to be done and help offered. I am also 31 so it does not just affect the young, I hate it and am trying so hard to beat it before it beats me and i loose everything.
sorry to be so depressing, my life is not all bad x x

Hi Janine

It sounds like you've had quite a battle with the eating disorder for the last few years.

Are you receiving help to fight it?  As you say, it can be a very deep-rooted problem, so as I understand people are helped by counselling.  Are you getting that sort of support?

Anyway, welcome to the forum, and we hope you stick around to share your experiences.  We're not experts on diabulimia but can probably help with any questions you have on the diabetes front.

Take care.

LJ

janine,

It might also be useful to drop into chat sometime.  Theres usually a few people around for most of the evening.  Although theres not many with direct experience like yours, many will have had some of the same feelings to some extent so it may well be good to talk to some other insulin users at least.

Direct link:  http://www.diabetes-support.org.uk/joomla/diabetes-chat

Hi Janine,

Like Jenny, I was going to ask if you were having any specialist help with this problem.  Though we can't share experience at least we can listen and understand the feelings we experience in common regarding diabetes itself.

FWIW I think I was once heading for bulimia, but it was a long time ago, in my late 20s and some very very good friends saw what was happening and made sure it didn't go any further.  To be honest I've totally forgotten why I was doing it in the first place or how I felt about it at the time.  What happened instead (and this may sound rather facile, but isn't meant to be), was that I took up smoking at age 28, which was to say the least stupid, but kept me from throwing up after every meal.  Fortunately I've managed to stop that now... well, 8 years ago 5th of Jan coming up.