It's about time people sat up and listened when it comes to the subject of diabetes and eating disorders. The conversation surrounding the release of BBC Three's documentary Diabulimia: The World's Most Dangerous Eating Disorder is starting to settle down and we must not let it sink. There is still so much to be done.
I do feel like I've written this article or parts of it at least many times over during the past few years. Way too many and increasingly desperate in tone. This is through my work as content writer and social media manager of the charity Diabetics With Eating Disorders (DWED).
We are the only UK organisation that focuses solely on what needs to be done to tackle the issue of type 1 diabetes and eating disorders (including insulin omission which was originally labelled by the media as 'Diabulimia' and has stuck ever since), raising awareness and providing information and support. DWED has been advocating for people with this dual condition since its formation back in 2009. Director and founder Jacqueline Allan provides training to health care teams and we now also have a members area where we upload specialist materials each month.
But it has been a slow crawl. We have struggled to gain recognition and be heard. Funding has been a particular problem, as well as having to rely on volunteers that can be hard to motivate. Running a small charity can be so difficult when it can stretch you too thinly to be able to do the work you do to the best you can.
But finally, in wake of the documentary people have started to listen. The audience we needed to engage are gathering with shocked and yet curious reactions, an audience further than just the parameters of the diabetes community and those involved with mental health. The programme was produced by BBC Three and first released to their online channel on the 24th September. After rising to the top of their most watched list and praised in various media publications it was subsequently aired to a wider audience on BBC1.
The traffic to DWED since the documentary went live has increased dramatically, with views to our website tripling within a couple of days. Membership subscriptions are rolling in steadily as well as requests for training by healthcare providers and DWED's name being circulated to a wider audience.
Yet, we still lost two young women from a Facebook group I belong to this week. Two precious women that could have been saved if they'd had the right support in time. This cannot keep happening, it has to get better. It's too heartbreaking every single time. Yet they still cite anorexia as the mental illness with the highest mortality rate. Which is why there needs to be official diagnostic criteria in place for people with diabetes and any kind of linked eating disorder. There must be. Not in ten years time but now. After which we need studies that look into the rates of death and complications arising from this illness. The science to justify the dire need of and huge value to be found in further support resources.
Furthermore, while people are alert, we must keep pushing the agenda and providing education, including accurate terminology, the correct stats and prevalence rates. Because website clicks; 'likes', 'follows' and 'favourites' are only the tip of tackling this gigantic iceberg of a problem.
The next stage comes from the health-professionals, and the governing bodies that pull the strings of what treatment services can provide. Change is gradually rippling waters and the most exciting news is that the NHS is looking to develop a national strategy to deal with diabetes and eating disorders. But the more people that request these services,, the more likely it is that the parties in control of making real decisions will look to putting their promises into action.
To echo the scope of reach provided by the documentary as far and wide as we possibly can we must keep talking. It is so important right now to shout louder, to break down the stigma of being honest and open about it. Ultimately to underline the message that this condition is real, does exist, and most of all deserves acknowledgement.
So, if this is the first time you are hearing about 'Diabulimia' then please do one thing: watch the documentary. See what you think. If you feel indifferent and just don't give a damn, then fine, you can simmer in your ignorance for now. Yet, if you think 'whoa, that's interesting', or feel sad/distressed/terrible/horrifying/any remotely emotional response. If you believe as we do that the dire state of support available to those with eating disorders and diabetes is not as it should be, then go away and find out more. Access our website, read up on what needs to be done and perhaps tell someone else you know about what you've found out, recommend they watch the documentary too.
If you've already seen it and you are reading this now then I suspect you've already been looking out for more information. You quite easily may have spoken about the programme with friends. I don't feel this kind of awareness sits dormant as the level of injustice involved is quite high. Additionally, a reminder during Diabetes Awareness Week is that most people know someone with type 1 diabetes, and many may well know someone with type 1 that has struggled with their eating behaviours or used insulin omission to control weight. It is a staggeringly common occurrence, reportedly relevant to 4 in 10 women with type 1 diabetes.
After talking what do we need? Action.
First comes the GP's, nurses and NHS commissioners. Funding.
Next comes the creation of specific units designed to treat ED-DMT1 and Diabulimia. The inpatient wards with staff that know what they are doing, that have been trained, and are confident with both the physical and psychological aspects of the condition.
Finally, there may be a day where we can see more survivors with successful recovery stories and less heart-breaking casualties.