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Type 1 diabetes and eating disorders

Whether you, or someone close to you is living with type 1 diabetes and an eating disorder, read on for provides information, shared experiences and links to further support.
Content last reviewed and updated: 09.10.2023

Getting to this page is an important step. You are not alone and there is support available, from healthcare professionals and other people going through the same thing as you are.

Type 1 diabetes and disordered eating

Type 1 and disordered eating, known as T1DE, is an eating disorder in a person with type 1 diabetes. This can be when someone restricts the amount of insulin they take on purpose, to lose weight or stop them from gaining weight, or are experiencing bulimia or anorexia alongside their type 1.

There are many reasons someone with type 1 may experience an eating disorder. Evidence suggests that about 42 per cent of people living with type 1 will experience distress about their diabetes at some point in their life, so if you’re feeling this way, you are not alone.

What is diabulimia?

Diabulimia is a media-coined term that refers to an eating disorder in a person with diabetes, typically type 1 diabetes, where the person doesn’t take the amount of insulin they need, because they are worried about gaining weight or want to lose weight. We explain below how this can affect your type 1 management and wellbeing, and how to find help.

Why might someone living with type 1 be at a heightened risk of developing an eating disorder?

Managing type 1 diabetes is very closely linked with food and the body and can also be stressful. Because of this, the risk of someone developing disordered eating is higher. Here are some of the reasons for this (as outlined by the Wessex ComPASSION Project):

A focus on weight and the body

Managing type 1 diabetes means that you have to think about your body a lot of the time. Self-monitoring of glucose levels and weight, and a focus on weight at clinic appointments, may cause people to focus on their bodies more than people who don’t have type 1.

One of the main symptoms of undiagnosed type 1 is weight loss. When people start taking insulin, their body restores the weight they have lost which can cause them to associate taking insulin with putting on weight.

Reaching or maintaining a target weight can be difficult when you’re managing type 1.

A focus on food

If you have type 1, you have to think about food a lot. You need to carefully read food labels and have a constant awareness of the amount of carbohydrates in food so that you can take the right amount of insulin.

The need to eat to treat hypoglycaemia can cause weight gain and can sometimes be counterintuitive (e.g. having to eat when not hungry) and can contribute to feelings of guilt around eating.

Feeling in control

Sometimes with type 1, you can feel like you’re not in control of your body. For some people, reducing how much they eat, or restricting or missing insulin doses can give them a sense of control. However, the person can find themselves out of control of these things too.

How we talk about type 1

The language that people use when they talk about type 1 can also have an effect on how you feel. If people use words like ‘control’ when it comes to type 1 management, it implies that it’s completely down to you to get it right every time. Realistically, managing type 1 isn’t like that, which is why using non-judgemental language is so important.

How your friends, family and colleagues see and talk about type 1 can affect how you feel, especially if they have misconceptions about what type 1 is and how it’s treated.

Swimming with the T1DE

Made by the All Wales Diabetes Implementation Group (AWDIG), NHS Wales Health Collaborative, Cardiff and Vale UHB Psychology department, and funded by Public Health Wales NHS Trust. The project was facilitated by Katja Stiller (Therapeutic Arts Facilitator) and Jane Hubbard (Animation Producer) from Breathe Creative. 

What are the signs and symptoms of an eating disorder?

Much like eating disorders that aren’t connected to type 1 diabetes, spotting the signs and symptoms can be difficult because the person affected by an eating disorder might keep them hidden.

The signs and symptoms can include:

  • Increase in HbA1c or erratic blood glucose levels
  • Multiple diabetic ketoacidosis (DKA) or near DKA episodes
  • Secrecy about diabetes management
  • Not going to diabetes appointments or not engaging in services
  • Fear of hypoglycaemia
  • Not taking enough insulin
  • Over-exercising
  • Binge eating
  • Restriction of food
  • Self-induced vomiting
  • Using laxatives or diuretics for reasons they’re not intended for
  • A history of weight loss or fear of weight gain
  • Feeling overwhelmed and frustrated at having to manage their type 1 (known as diabetes distress)
  • Depression and anxiety
  • Concerns about body image

If you are concerned that any of these issues might be affecting someone close to you, please reach out to their Diabetes Healthcare Team or contact one of the organisations listed below for advice, as soon as possible.

What can happen if you don’t take the insulin you need?

Deliberately and regularly reducing or missing insulin doses with the aim of affecting body shape or reducing or not gaining weight, is known as ‘insulin omission’.

Missing or restricting insulin doses can leave someone at risk of developing short and long-term complications. Many of these complications can be life-changing or life-threatening. Reading the list below may feel scary, but with support and help many of these can be avoided (see below for resources). Find out more about the complications of type 1.

What to do about eating disorders

If you would like to speak to a professional about type 1 and eating disorders please contact your Diabetes Healthcare Team as soon as possible, or scroll down to the useful links section for details of organisations that can help.

Where to find more information and support

Organisations which provide support for people affected by type 1 diabetes and eating disorders:

Blogs on type 1 diabetes and eating disorders:

Videos on type 1 diabetes and eating disorders:

Podcasts

The T1DE podcast is a series all about type 1 diabetes and disordered eating from the ComPASSION Project team.

We would like to offer our heartfelt thanks to Ariella and Lawrence for sharing their stories with us.

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