Last year, I wrote a piece for Mamamia’s health and beauty site The Glow about diabetes-related eating disorders, specifically insulin omission, manipulation or restriction for the purpose of weight loss. This is sometimes known as ‘diabulimia’.
This morning, when I checked my Facebook feed, I was really pleased to see that Mamamia had reposted an edited version of the piece on their website. Raising awareness of this issue is, in my opinion, really important, so to see it in mainstream media is a very positive step.
I am dismayed, although not really surprised, at some of the comments following the reposting of this piece. Today’s comments echo those that followed the original post in November last year.
Some commenters have called both me as the author and Mamamia irresponsible for writing about, and then publishing, the post.
I refute that and have done so ever since I started doing work in the area of diabetes and eating disorders more than seven years ago. This wasn’t some self-serving project that I started. I started this work – which including seeking funding to conduct research and developing a consumer resource – because it was clear that it was an issue of concern for many people living with type 1 diabetes. More so, many people who were in fact manipulating insulin to lose weight
The first time I presented our research and the resource we developed (in close consultation with people living with diabetes) at a healthcare professional conference, I was met with some resistance. One HCP stood up and told me that we had just written a ‘how to’ guide – that is, we were showing people with type 1 diabetes just how they could use insulin manipulation to lose weight. She said that she would not be promoting the resource.
And this is the gist of some of the comments on the Mamamia Facebook page today.
I maintain that this thinking is seriously flawed in many ways. It is assuming that only a small number of people are engaging in this practice and that not many people know about it. It suggests that the resource – which focuses on how to begin to discuss the issues and where to find help – is the first time that people reading it will have heard about insulin manipulation for weight loss.
However, this is just not true. The research conducted by Diabetes Australia – Vic in 2008 showed that 60 per cent of respondents (women with type 1 diabetes aged between 18 and 35 years) had omitted or restricted insulin at some point to control weight. And of those, one third did so on a daily basis. This finding was consistent with international research.
That’s not a tiny number.
So why do I think we should be openly talking about this issue? There are so many reasons.
When we don’t talk about things in an open and safe way they go underground. People start to feel that they are the only ones doing it and subsequently don’t talk about it. They feel isolated, shamed, stigmatised and unsure where to go for help.
We need to be talking about it so that HCPs understand that this is a serious and common issue – and to develop strategies to regularly screen for these behaviours and assist people who are engaged in this practice.
The research showed that health professionals working with people with diabetes are ill-equipped to deal with diabetes-related eating disorders. In fact, the same research showed that 85 per cent of those surveyed had never even been approached by a healthcare professional about insulin manipulation, and of those almost 60 per cent reported manipulating insulin for weight loss
We are wasting precious time and energy debating whether or not we should be talking about ‘diabulimia’. Instead, our focus should be on how we talk about it and what we do to treat it. We should be removing shame and stigma so that people with diabetes don’t feel embarrassed or fear judgement if they tell their HCP that they are manipulating insulin to lose weight. We should be removing barriers that prevent people seeking help.
I would argue that in this case being irresponsible has nothing to do with trying to shed light on diabetes-related eating disorders. I believe it is irresponsible to think that not speaking about it – not highlighting it as a serious issue – is that same as actually doing something about it.
So today, I urge you to share the article with your networks and start and contribute to discussions. Don’t sweep this under the carpet. Talk about it. Get it out there.
Sting is in Melbourne at the moment, getting ready to do a couple of concerts. Last night, he just happened to pop into Bennett’s Lane in Melbourne and sang a song with Adelaide musician Jo Lawry who is in his band. Here they are together singing one of my favourite Sting songs ‘Whenever I Say Your Name’.
13 comments
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February 6, 2015 at 2:21 pm
helwild
More power to your arm Renza. & superbly written. Now I’d like to see some research on another Mental Health disorder which in a way is the opposite end to diabulimia. ‘Emotional Eating’ and its contribution to obesity, unwanted weight gain, for pwd. (of any type, including gestational & type 2 if possible.)
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February 9, 2015 at 2:54 pm
RenzaS
Thanks Helen. And I agree, there should be more research in diabetes and mental health, and emotional eating would be a very valuable research topic.
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February 6, 2015 at 2:22 pm
helwild
Reblogged this on helwild and commented:
Why diabulimia should not be swept under the carpet.
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February 6, 2015 at 3:16 pm
skchrisman
I say we can’t do enough talking or shining a light on the purposeful manipulation of diabetes management for the control of a number on a scale, or a size on a clothing label. My daughter is 14. We go deep in teaching her how to handle every aspect of her care, which means she has a great awareness of how the system works and all that it would take to make a change for the good, or for the bad. Or for the bad that she believes at that time in her life is good!
I’m curious how a HCP can be so concerned about your ultimate “how-to” lesson plan for practicing diabulimia. Seriously? Talking leads to learning, sharing, growing, accepting and feeling less ALONE. All this leads to potential for personal change.
Please keep talking. I count on the DOC to keep talking, for my girl, and for me. I appreciate you.
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February 9, 2015 at 2:54 pm
RenzaS
Thank you for reading and for your comment. I love your approach to speaking with your daughter about all aspects of her care. I’m sure that is going to equip her far better as she takes on more and more responsibility for her diabetes management.
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February 6, 2015 at 4:47 pm
Allison Nimlos
Well, that’s like saying “We shouldn’t talk about anorexia if we say that people stop eating to lose weight, it will give them ideas.” Um…. no? I know certain things like talking about weight or maybe even different strategies, like only dosing for certain things or at certain numbers, would be “prescriptive” and perhaps triggering. But just saying “hey, some people stop taking insulin to lose weight” is saying “some people stop eating” or “some people binge and purge.” If that’s their line of thinking, do they want us to completely stop talking about eating disorders? Cuz that’s what I’m hearing…
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February 9, 2015 at 2:52 pm
RenzaS
Thanks for your comment, Allison. I am staggered that people think that if we stop talking about certain things – usually difficult things – they just go away. We know that’s not the case. (Teenage pregnancy rates are higher when abstinence-only is taught rather than structured sex ed, for example). Thanks for reading.
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February 6, 2015 at 5:10 pm
Jenny Edge
We need to discuss all issues in a gentle compassionate and my adolescence non judgemental manner. I’m know I didn’t have all insulin as written in my record book and I know I didn’t feel well.What about males who do the the same things ?
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February 9, 2015 at 2:50 pm
RenzaS
Hi Jenny. Thanks for your comment. The research I was involved in focused on women with type 1 diabetes aged between 18 and 35 years, but there is evidence to show that males with diabetes are also engaging in this behaviour – and it needs just as much attention for this target group. As always, thank you for reading.
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February 9, 2015 at 6:49 am
Scott E
I am always leery of posting things on Facebook to a wide audience because i don’t know what kind of response I’ll get. I don’t know Mamamia or its targeted audience, but stuff on Facebook spreads fast, and people are shameless and ignorant (and sometimes sarcastic, though you can’t always tell) on there.
But to those who are dismissing this as something that doesn’t really happen, I point them to the comment by Merlie on the actual article. In just a few sentences, she validated pretty much everything you wrote about, and then some. “doing this on and off for 25 years”…”improved..self-esteem dramatically”…”the temptation is too great”. And then she goes on to some more scary introspections: “I know how far I can go before I feel ill”, and “I am killing myself slowly. I just don’t care about that.”
You are writing for people like Merlie, to whom you can make a difference — not to those commenters on Facebook. Don’t worry about them. You’re doing fine.
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February 9, 2015 at 2:49 pm
RenzaS
Thanks, Scott. I saw the comment you mention on the article and any fleeting doubt I had about writing it vanished. Thank you for reading.
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February 9, 2015 at 2:47 pm
Deb S
I support your work Renza – keep highlighting this issue. There are many HCP’s who appreciate your passion and consumer focused work.
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February 9, 2015 at 2:48 pm
RenzaS
Thank you Deb. That’s so lovely to hear. Thank you for reading.
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