I've been doing some reading on diabulimia. It's not a recognized eating disorder, but it certainly sounds like it should be.
Diabulimia is a means of weight loss, primarily suffered by young women. In order to lose weight, they use far less, sometimes even no insulin and let their blood sugars run very high. It means they can eat whatever they want without it having any repercussions on their weight. I remember how skinny Olivia was when she was diagnosed, just before her 3rd birthday. She only weighed 24 lbs. Her body was eating itself.
I can understand how it would be easy to fall into diabulimia. The whole mind set of watching your food intake, of measuring every bite, every sip, borders on obsessive, the same way someone with anorexia behaves. Both diseases are a form of control. And since insulin can make you gain weight anyway, denying yourself those shots could be seen as a different form of control - controlling your body when your disease controls you.
Given the emphasis on stick-thin as the beauty ideal, it's surprising that there aren't more teens and young women with this condition. To be perfectly frank, if I had diabetes, I would be sorely tempted. I know how I am about food and body image and I struggle not to pass those issues on to my daughter. But it does worry me.
My name is Jacqueline Allan and I am the Director of www.DWED.org.uk (Diabetics with Eating Disorders), a not for profit organisation working towards charitable status. Recent studies show that not only are female* type one diabetics at twice the risk of developing anorexia or bulimia, as many as 40% of 15 – 30 year olds regularly manipulate or omit insulin in order to lose weight (commonly dubbed diabulimia). This practice can have devastating consequences such as organ failure, infertility, blindness and in the worst cases, death. Despite this it is not officially diagnosable and there are no current guidelines for the NHS on how to deal with the issue.
DWED has two main purposes. Firstly we offer support to those affected by deliberate omission and their carers. We try to find suitable services in their areas and this information will be posted on the website so that those who are ready to seek help know where to go to get it. DWED also supports suffers and their carers personally through emails, phonecalls, where possible home visits and through a variety of social networking sites and from tudiabetes to facebook (public and private). There are 500 members across groups. All of the sites are completely pro recovery with no pictures of talk of numbers allowed.
The second purpose of the organisation is to campaign for better (in some cases any) facilities for Diabetics with eating disorders. DWED is in support of Deliberate Insulin Manipulation/ Omission being recognised as a Mental Disorder. We have a number of members who have been simply deemed as non - compliant and left at that. This is not only unsatisfactory it is potentially lethal. As something that is not officially diagnosable deliberate insulin manipulation/ omission tends to cause a confused reaction among professionals. To be honest when this project began the core aim was to raise awareness within the health service. The overwhelming reaction from all the PCTs contacted is that nearly everyone is aware of it but no one knows what to do about it; there is no ‘strategy’, no guidelines and little UK based research. As such DWED is putting together a Professional Advisory Board composed of Eating Disorder and Diabetes Professionals in the hope that a dialogue will open and a multi – disciplinarian, patient centred approach will be promoted.
I hope that I have explained adequately what Diabetics with Eating Disorders does and that this is something you are interested in supporting. If you have any questions or comments then please get back to me via the website or through jacq@dwed.org.uk
*Although less common it can also be found in type 1 males.