It seems that barely a day can go by when mainstream media doesn’t report on the latest ‘thinspro’ trend – always dangerous; frequently scary and mostly downright disturbing. In this weekend’s The Age was an article about a new phenomenon – the triple zero dress size. I can’t even fathom what that would look like, but I am no longer surprised when I read these articles.
A few years ago now, I managed a project about diabetes and eating disorders. The project was funded by the NDSS and the aim was to produce a national resource that would address the issues of diabetes-related disordered eating behaviours.
As is often the case, I started off thinking I had a pretty good idea of what the project would be about and how it would end up looking, only to realise how completely off the mark I was. I had no idea just how complex diabetes can make eating disorders. In addition to ‘traditional’ eating disorders, throwing diabetes into the mix meant addressing insulin manipulation, restriction and/or omission for weight loss. Often referred to as ‘diabulimia’ (a term that I personally despise for its sensationalist leaning), this issue has been covered in mainstream as well as diabetes-related media in recent years.
As our work started, I could see the complexity of this issue. We worked with the Centre for Adolescent Health at the Royal Children’s Hospital, Melbourne and developed an anonymous online survey and, from the results, a report addressing the most significant issues. The report focussed on women with type 1 diabetes aged 18 to 35 years.
One of the startling things to come from the research was how rarely insulin omission was actually discussed with HCPs. In fact, the survey showed that 85 per cent of females with type 1 diabetes had never been asked about insulin omission, and of these women, about 50 per cent were restricting or omitting insulin with the aim of losing weight.
We heard over and over and over again how isolated people felt. Frequently, we read comments where people thought they were the only ones engaging in this behaviour and thought there was nowhere to turn. They feared they would be judged by others and that no one would be able to help them. They were scared to mention their behaviour to their healthcare team.
Following the publication of the report, I did a lot of presentations at diabetes (and other) conferences about our findings and the resource that was subsequently developed. And one of the things I always spoke about was the feeling of isolation reported by the women who completed the survey.
The response to these presentations startled me at times. In the Q & A section of one session, a dietitian stood up and said she was horrified that we were developing a resource for people living with diabetes. ‘You’re developing a how-to for people’, she told me. I, in turn, was equally horrified at her response.
I think that, given the results of the survey (which were in line with international literature) we could safely say that many people with diabetes had put two and two together to work out insulin restriction results in weight loss. (Those of us who can remember our diagnosis often talk about the rapid and sudden weight loss we experienced prior to diagnosis and commencement of insulin therapy.)
Not talking about this very serious issue sends it underground. It contributes to the feelings of isolation we heard about and it means that people engaging in these behaviours feel unable to address them.
Instead, I believe we should be discussing diabetes and eating disorders – a lot – and ensuring that people feel safe and secure talking about it with their HCP, confident in the knowledge that they will not be judged and that there is help at hand. Sweeping it under the carpet does not make it go away; it just causes a lump that we keep tripping over.
In the recently launched resource for adult endocrinology trainees, Enhancing Your Consulting Skills, there is an entire chapter dedicated to eating disorders, including offering specific words to use to ask people with diabetes if they are engaging in insulin restriction or omission for the purpose of weight loss. This is a huge step forward!
Some (many?) of the things that go with living with a chronic health condition are incredibly difficult. This is indeed one of them. But just because it is hard and not easily defined or dealt with does not mean that we should ignore it or put it in the too hard basket. In fact, I believe, we should probably give more attention to it until it becomes something that is routinely discussed and assessed.