For me, diabetes has not been the ‘empowering’ or ‘call to action’ incentive that you sometimes hear from bloggers in the online community. My diagnosis of type 1 diabetes only added to my body image issues and at times I felt like I hit the bottom. This is my story.
I have had issues with food and how my body looks from my earliest memory. I remember my first day of Prep – a girl called me fat, and I spent the time after lunch sitting on the carpet pinching my stomach rolls, before announcing to Mum that I needed to ‘lose weight’. From 11 until 16, I would throw up my meals at least once a day. The year that I was 15, I starved myself until I’d lost 15 kilograms and had to be put in hospital.
I was diagnosed with type 1 diabetes about a year after starting recovery from bulimia. Previous to the diagnosis, I had been losing weight – I thought it was due to my lack of binging and moving towards a healthier attitude to food, but really it was my insanely high blood sugars. When I was admitted to hospital, the diabetes educator assigned to help me out sat down with pages and pages of nutritional information. “Right!” she said cheerily. “Today, we’re going to learn how to count carbs so you know how much insulin to take. Have you had experience with this sort of thing before?”
Only a little. I used to count carbs. Count calories. Count fat. Count how many bites of the apple I took before throwing it away and declaring I wasn’t hungry.
Type 1 diabetes is a serious and complex condition – which I think is an exceptionally hard condition to navigate when diagnosed as a young woman. Management of diabetes requires constant examination of your numbers. Your blood glucose levels, your HbA1c, your insulin to carb ratio, and your insulin sensitivity…the list could go on forever. We are asked our weight and our exercise habits constantly, and have our diet examined in excruciating detail. We are told “You need to lose some weight, why are you eating white bread?” and “Weigh your food every time, it will give you a better indication” (yes, because weighing every single thing I eat is not obsessive at all…).
It is no wonder that an average person experiencing all of this for the first time can start to get a little hung up on their body and food choices. For someone like me, who already had huge body issues and a numerical attitude to food, my diagnosis was disastrous. Here I was given an excuse to obsessively count numbers, exercise, and refuse food, all because I was now a ‘person with diabetes’. Healthcare professionals didn’t tell me what I was doing was wrong; they praised me for ‘my excellent control’ and told me to keep doing what I’m doing. In any other scenario, my behaviour sets off huge alarm bells. When you have diabetes, this behavior is applauded and held up as an example by some in the medical community.
I later discovered that by restricting my insulin I could eat whatever I wanted and not put on any weight. What I didn’t particularly care about was the fact that I was slowly killing myself. I was living away from home in the UK at that time, and without a family who knew my background, my a1c rose to a very high number and I came home a month early with complications and in a terrible head space.
This condition is called diabulimia and affects many young people with type 1 diabetes around the world. It is incredibly dangerous, yet most people within the medical community have no idea what it is. We are told that we are being ‘naughty’ and ‘non-compliant’, told to “just take your insulin and stop being difficult!” A doctor who told an anorexic to “just eat and stop being difficult” when they went in to seek help would not last long. Why then are we ignored and made to feel like we’re not sick? When someone with an eating disorder seeks help, they need help, not shame.
In my experience, there is nothing in this country to help young people like me. Young women and men who attend medical appointments with perfect logbook numbers but an Hba1c of 11 are told, 90% of the time, to stop being ‘dishonest’. Even if the medical professional does realise what is going on, where do you refer us? The National Eating Disorders Collaboration doesn’t even recognise diabulimia – it cannot be classified under EDNOS (Eating Disorder Not Otherwise Specified). There are no support groups, or any national foundations in Australia that are focused enough on this issue. If a person with type 1 diabetes is restricting their insulin, but binging, purging, or sliding towards anorexia, our treatment is still different from others. We can’t ‘ignore numbers’ like everyone else, our food must be counted every day for the rest of our lives. How do you help us? We can’t just slip into a normal support group. For many, it’s a situation that has no answer.
This is why I want to start something like DWED (Diabetics with Eating Disorders) here in Australia. We need something concrete to help our healthcare system understand the challenges that come with treating eating disorders in people with diabetes. I want a patient to be able to walk into their GP, ask for help, and have a place or people for the GP to refer them too. I feel like my role as a Young Leader will put me in a position where I can make the connections and find the people who will be able to help me make this dream a reality. There are so many people like me out there in this country right now, and there is nowhere for us to go.
If you have diabetes and want to talk to someone about body image issues and eating disorders you can contact the Diabetes Australia – Vic Diabetes Infoline service at 1300 136 588 to speak with diabetes educators and dietitians who will direct you to local services. You can also read more about diabetes and eating disorders in the National Diabetes Services Scheme booklet or contact the The Eating Disorders Foundation of Victoria.
Georgina Peters is a French major at Monash University and a Diabetes Australia Young Leader. She has lived with diabetes for three years and is active on social media, to advocate for changes in the treatment of young people with diabetes, body image and eating disorders. You can read more of Georgie’s views on her blog The Lazy Pancreas and on Twitter.