T1DE – Type 1 Diabetes with Disordered Eating (Diabulimia)

A few weeks ago, a Parliamentary Inquiry chaired by Theresa May and Sir George Howarth highlighted the risks of disordered eating among people living with type 1 diabetes, also known as T1DE, or Diabulimia.

So what is Diabulimia? And what does treatment and recovery look like?

What is Diabulimia / T1DE?

Diabulimia is a term used to describe an eating disorder occurring in individuals with diabetes, particularly amongst those with type 1 diabetes.

Type 1 diabetes is when your pancreas no longer makes insulin, so a type 1 diabetic has to inject insulin themselves in order to control their blood glucose levels.

Diabulimia involves the deliberate manipulation of this injected insulin for the purpose of controlling body weight, often resulting in hyperglycemia (high blood sugar levels) and risking medical complications. The term “diabulimia” is a blend of “diabetes” and “bulimia,” and refers to the involvement of diabetes and the binge eating and/or purging (vomiting) behaviors associated with the bulimia diagnosis [you might wish to cut out].

Despite not officially recognised as a distinct medical or psychiatric diagnosis, it is believed that approximately 30% of people with type 1 diabetes have Diabulimia, making an eating disorder diagnosis twice as prevalent in those with type 1 diabetes, than without.

What are the signs and symptoms?

Like other eating disorders, there’s no ‘one way’ to have Diabulimia, but there are common behaviours and experiences that can help with getting a diagnosis and subsequent treatment:

  • Insulin manipulation: Individuals with diabulimia may intentionally skip or reduce their insulin injections to cause their bodies to eliminate glucose, leading to weight loss. Doing so can have serious consequences, as insulin is essential for regulating blood sugar levels and preventing complications in diabetes
  • Binge eating: Diabulimia often involves periods of binge eating, where individuals consume large amounts of food – especially those high in calories – without properly managing their blood sugar levels
  • Fear of weight gain: Often, what underlies the behaviours of diabulimia is a fear of weight gain or negative body image
  • Medical complications: The manipulation of insulin in diabulimia can lead to significant health risks, including hyperglycemia and diabetic ketoacidosis (DKA)

What is it like to live with Diabulimia?

Living with diabulimia can be an extremely challenging and complex experience. Day to day, it involves both the physical and psychological aspects of diabetes management and living with an eating disorder.

Individuals with diabulimia may grapple with a range of emotions, thoughts, and behaviours that impact their daily lives. Many people feel extremely conflicted as they engage in a constant struggle between the desire for weight loss or control, and the need for proper diabetes management.

Individuals can feel extremely isolated in their experience, and confront feelings of guilt and shame towards their behaviours and the emotional impact of their actions. These feelings can create barriers to seeking support, as someone may fear the judgement of others. It is therefore vital that individuals with diabulimia are treated with compassion and commended for reaching out for support.

What causes Diabulimia?

Similar to other eating disorders, there’s no one reason why diabulimia may develop. For many, it is a combination of psychological and environmental factors that cause someone to develop such behaviours.

People with diabulimia may struggle to regulate their emotional experience and find some relief in displacing their anxiety and need for control onto their bodies.

In this way, someone might be struggling with intense feelings of anxiety, depression, stress or loneliness and find it challenging to regulate their distress. This, coupled with societal standards of beauty and fitness, may encourage them to project their emotional distress onto their bodies – allowing them to feel a sense of control and certainty through disordered behaviours, when otherwise they would feel out of control or struggle in the face of uncertainty.

It’s important to note that the causes of diabulimia are multifaceted, and each individual’s experience is unique to them and their history.

Treatment for Diabulimia (T1DE)

It can be incredibly daunting to consider treatment for an eating disorder such as diabulimia, but early intervention and expert help is vital to ensure someone gets the support they need.

Treatment must attend to both the physical aspects of diabetes management, as well as the psychological aspects related to someone’s sense of self, self-esteem, and their relationship to their body.

In this way, many benefit from a multidisciplinary approach that combines psychotherapy, dietetics, psychiatry and nursing to ensure someone is wholly monitored and supported in their recovery.

Recovery from Diabulimia (T1DE) is possible

Diabulimia is a serious and potentially life-threatening condition, but recovery is possible. For many, recovery involves a commitment to challenging the daily behaviours and thought patterns that arise from the disorder, whilst exploring the underlying causes that led to struggling in the first place.

By committing to this piece of work, people can break the cycle of using insulin and develop healthier resources and coping mechanisms for life challenges.

If you, or someone you know, are struggling with symptoms of diabulimia or T1DE, it is vital that you reach out for support from a specialist or ask a trusted loved one to support you with doing so. Whilst feelings of anxiety and fear may arise, hold onto the knowledge that there are people who understand and who can come alongside you in your experience with kindness and compassion.


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