Finally, I’ve managed to get round to writing my second blog based on the talks I attended at the Diabetes UK Professional Conference. This blog focuses on eating disorders and disordered eating in occurrence with diabetes.
Speaking very openly and honestly, I can safely say that I have never had any experience with an eating disorder or disordered eating. If anything, I love food too much! I am a huge foodie, so having an issue with food is not something that I’ve ever struggled with. Of course, as we are all only human, we all have our body hang ups and it’s accurate to say that I have mine too.
When it comes to something so tender as eating disorders you really do have to be careful about how you approach it. It’s also not something that people are willingly open to speaking about. Some people reading this will probably think “Well, how can she comment if it’s never happened to her?” Rightly so, I haven’t got any experience to draw from, but I can always express my thoughts. I know of a few friends and acquaintances who have had experience with eating disorders. Some who have battled through it all tremendously and others who are still living with the demons of it today. However, before attending DUKPC I had never met a type 1 who had experience with eating disorders – or at least, not to my knowledge.
When I decided to attend this talk I felt like I was attending it more out of curiosity over anything else. I knew it wouldn’t upset me on a personal level, but I knew that whatever I was going to hear was going to move me emotionally. I was 100% right about that.
I want to start with the term “diabulimia”. For most of you, this term is probably completely alien to you. Funnily enough, it isn’t a medically recognised term despite it being a real eating disorder. Diabulimia is an eating disorder in which people with type 1 deliberately give themselves much less insulin than they actually need, or completely stop giving themselves insulin all together. This is all focused on the intention of losing weight – which inevitably will happen without insulin on board.
I really want to draw attention to an incredible talk by a wonderful woman by the name of Lynsey. (Who has just triumphantly completed the London Marathon! Well done Lynsey!) Lynsey bravely spoke about her experience with omitting her insulin injections in order to lose weight at DUKPC. Her talk was so candid and honest and I was extremely moved by her openness.
Lynsey was diagnosed at quite a young age. Her parents had a really good understanding of diabetes so her levels were always really well controlled, and she would often get praised at school by teachers who would commend her on how well she dealt with it. As she got a little bit older classmates would begin to make comments such as “Why are you injecting yourself in front of people? That’s disgusting!” The more comments she got the more it made her think about not injecting. One day she didn’t inject and realised that nothing bad had happened – she wasn’t dead and she still managed to get on with her day. A few years later she put two and two together and made the link between not taking insulin and losing weight. Lynsey was around 16 years of age then, so much more conscious of her appearance. It wasn’t until she went to University that things really started to get out of hand. Due to the rapid weight loss, Lynsey was receiving loads of comments from friends telling her how amazing she looked and how much weight she seemed to have lost. These comments became a source of motivation and a boost to her confidence. Unbeknown to Lynsey she had no idea what she was actually doing to herself and her body.
Lynsey became so unwell that she didn’t want to get out of bed and spiraled into depression which she was given anti-depressants for. It was never addressed that she had diabetes when she was seen for the depression. There was no link made there, however Lynsey now knows that her relationship with diabetes caused it.
Even after graduating from University Lynsey was still omitting her insulin in order to continue her weight loss.
It seems quite clear that throughout Lynsey’s ordeal with diabulimia, no-one ever asked her if she was still taking her insulin. It’s actually unbelievable. Unfortunately, due to Lynsey’s lack of care towards her diabetes during the time, she is now living with complications due to her actions.
As you can see from the image above Lynsey is now registered partially sighted and has no peripheral vision. The vision she does have left isn’t great, but the doctors did all they could to save the remaining vision. She is very lucky.
All this to lose weight. Diabetes honestly is a condition that doesn’t get given enough credit for it’s severity. It’s often poked fun at by people and used as a stimulus for food related jokes which I am strongly against. The seriousness of Lynsey’s story really does go to show how abusing your diabetes really doesn’t do you any favours later in life. I’m sure if young Lynsey could have looked into the future and seen what she was going to have to live with, she would have thought twice about her actions and sought help. What’s baffling to me, is that not one person asked her about taking her insulin. The mind just boggles. Saying all this, Lynsey is such an inspirational woman and although I haven’t known her for very long, I am proud of the journey she has taken in order to turn her life around. She is now a motivational speaker in regards to diabulimia and has recorded a few videos about it with Diabetes UK. You can see her ‘Recovering from diabulimia’ video here.
There was another discussion in the talk from Dr Simon Chapman. He spoke about how inadvertently doctors are not helping when it comes to diabetes and eating disorders.
He actually commented that he feels that “the scrutiny I am forcing patients to do can be causing a negative affect.” I understand where he is coming from here. When you have diabetes you are constantly thinking about food, carbohydrate contents, numbers, nutritional information, weight gain or weight loss. I can see why you could easily become obsessed with this information and take it to the extreme. I really wouldn’t agree that doctors are causing the problem though.
All in all, the talk was strongly informative and I was particularly moved by the personal account from Lynsey. As I said before, although I have never experienced an eating disorder or any form of disordered eating, I can still understand what I am told about it. For anyone who is struggling to understand why someone would put themselves under such severe pressure and strain, think of it like this – “You find yourself in the grip of this larger power which starts off small and gradually takes over.”
Diabulimia does exist. It needs to be recognised and things need to be done to make it stop. It took 6 years before something was done for Lynsey. Lynsey herself wouldn’t want to see anyone else go through what she went through. Follow Lynsey on Twitter @T1Diabolical
Remember: if you think you or anyone you know is suffering from any form of eating disorder please contact your medical team in order to gain the help you/they need. Thank you.