Diabulimia has been in the news a fair bit recently, partly thanks to the parliamentary investigation into type 1 disordered eating that is happening at the moment. It is a term used to describe an eating disorder that affects some people with type 1 diabetes. Shockingly, it’s really common- in the UK, up to 4 in 10 women and girls, and 1 in 10 boys and men. It refers to an eating disorder in a person with diabetes, typically type 1 diabetes, wherein the person purposefully restricts insulin in order to lose weight. Doing this results in high blood glucose levels, which carry an increased risk for serious complications, and straying into keto-acidosis (when the body burns up other fuel because it doesn’t have insulin to get energy from carbohydrates) is incredibly dangerous. It risks brain damage, organ damage and even death.

The ComPASSION Project lists some of the risk factors for diabulimia:

• The need to carefully read food labels
• The focus on weight and food intake at diabetes clinic appointments
• The need to eat to treat hypoglycaemia, which can cause weight gain and can sometimes be counterintuitive (e.g. having to eat when not hungry), contributing to feelings of guilt
• An increased awareness of the body through the need for self-monitoring of weight and glucose levels
• A constant awareness of carbohydrates or calories in food in order to match insulin requirements for meals
• The effort put into diabetes self-management does not always equate to the outcomes of these efforts causing frustration, guilt and shame, which may be influenced and reinforced by health care professionals’ (HCPs’) responses to diabetes data
• Unrealistic expectations set by healthcare providers regarding blood glucose levels
• The language of diabetes which can be polarised e.g. good versus poor control; in range versus out of range
• A heavy focus on numbers and the assumptions about the link between numbers and effort or value/self- worth
• Difficulty maintaining a desired weight
• Weight loss prior to diagnosis and regain on starting insulin, cementing an association between insulin and weight gain
• Others’ scrutiny of and assumptions about diet and diabetes management e.g. family, friends and colleagues

Scarlett Rogers, the 15-year-old heroine in Sugar, Sugar, my new novel for teenagers, makes a conscious decision to limit her insulin to lose weight. Scarlett’s burned out from years of managing her type 1 diabetes, yo-yoing between high and low blood sugar. Her parents have had a messy divorce- Scarlett blames her diabetes for pushing them apart. She splits her time between her fun but feckless dad who doesn’t engage with her diabetes and her mum who suffocates her with rules. When Scarlett starts to limit her insulin, she feels like she’s taking back control of her body, but it isn’t long before she’s tangled in a web of lies, far from home with dramatically failing health.

It takes total collapse for Scarlett to seek health, but nowadays, health care providers are more and more aware of the disordered eating which can come with the pressures of diabetes and although it is nowhere near enough, there is help out there. As the mother of a type 1 diabetic, I know just how exhausting the condition can be. It helps to talk about how hard it is.

Sugar, Sugar is coming soon…watch this space!