When Diabetes Meets Eating Disorder: A Guide to Diabulimia

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Diabulimia is a dangerous eating disorder that can endanger the life of a young person. Increasing awareness and understanding of the disorder is important to help loved ones and communities recognise the signs of the disorder and improve access to treatment. While the condition can seem scary, with professional medical support, young people can recover from diabulimia and reclaim a healthy, vibrant future.

What Is Diabulimia?

Diabulimia is a term that refers to the use of insulin restriction to lose weight among people with type 1 diabetes. While diabulimia is a non-medical term, some medics use ED-DMT1 (Eating Disorder-Diabetes Mellitus Type 1) to describe the co-occurrence of an eating disorder and type 1 diabetes. Diabulimia is a serious mental health disorder that can be life-threatening and requires immediate treatment and care.

The Relationship Between Eating Disorders and Diabetes

Disordered eating behaviors are more common among those with type 1 diabetes (T1DM) than those without. Studies estimate that eating disorders affect 20% of females with type 1 diabetes – about twice the rate among females without diabetes.

Researchers think that concerns over shape and weight, difficulty coping with diabetes, and the effect of diabetes on self-image may all make people with diabetes vulnerable to eating disorders. Young people with T1DM often all see substantial weight gain as they move into early adulthood, which, in combination with societal pressures, can exacerbate dissatisfaction with their body image. At the same time, the need for constant focus on nutrition and medication in diabetes management may become overwhelming. In these cases, diabulimia may represent an attempt to find a sense of control over their weight and eating.

How Does Insulin Restriction Affect a Young Person’s Body and Why Is It So Dangerous?

When a young person misses an administration of insulin, their blood glucose levels increase. This leads to a quick breakdown of proteins and a loss of glucose through their urine, preventing it from passing into the bloodstream. This leads to rapid calorie loss and, when repeated, substantial weight loss.

Young people that are restricting insulin doses often face diabetes complications and other serious short- and long-term health consequences. These include:

  • Diabetic ketoacidosis (DKA), a dangerous condition caused by reduced insulin in the body. DKA can lead to serious long-term complications, including persistent or recurrent retinopathy (vision loss) and kidney failure.
  • Yeast infections caused by high blood sugar, making it easier for infections to grow.
  • Slow wound healing.
  • Severe dehydration.
  • Electrolyte imbalances.
  • Menstrual disruption.
  • Heart disease.
  • Kidney disease.

Diabulimia is an extremely serious eating disorder that can endanger the lives of young adults. An eleven-year longitudinal study found that insulin restriction increased the risk of death among females by 3.2 times. While this may seem scary, remember that eating disorders are treatable and with long-term support and care, recovery is possible for anyone.

How Common Is Diabulimia?

Despite its dangers, research suggests that using insulin restriction in order to lose weight is common among people with T1DM. According to one study, 60% of people with T1DM reported insulin restriction.

Given the severity and prevalence of the condition, there is a serious lack of awareness surrounding diabulimia amongst both young people and adults. This lack of awareness can act as a barrier to effective treatment that addresses both the physical and emotional causes of the disorder.

What Are the Signs and Symptoms of Diabulimia?

Recognising the signs and symptoms of diabulimia in a young person is hugely important and potentially life-saving. Some young people may be unaware of the condition or of the short- and long-term damage it can do to their health. Others may be aware of the risks of their behaviours but feel unable to reach out for support or not know that their behaviours are a form of an eating disorder.

If you think there’s a possibility that your child may be restricting insulin, seek immediate professional medical support.

According to the National Eating Disorders Association, some of the emotional and behavioural signs and symptoms of diabulimia include:

  • Neglect of diabetes management
  • Secrecy about diabetes management
  • Avoiding appointments related to diabetes
  • Fear having a low blood sugar
  • Being afraid that insulin will cause weight gain
  • An extreme change in diet
  • Anxiety about body image
  • Restricting certain foods to lower the dosage of insulin
  • Avoiding eating in others’ company
  • Feeling uncomfortable managing insulin in front of others
  • Being preoccupied with food, weight and/or calories
  • Excessive exercise
  • Sleeping more
  • Social isolation
  • Depression and/or anxiety

Physical 

  • Continuously having an A1c of 9.0 or higher
  • A1c that is inconsistent with meter readings
  • Unexplained weight loss
  • Nausea and/or vomiting
  • Frequent urination
  • Multiple DKA or near DKA episodes
  • Low sodium and/or potassium levels
  • Frequent bladder and/or yeast infections
  • Irregular menstruation or missed periods
  • Problems with vision
  • Fatigue
  • Dry hair and skin

When speaking to a young person about their behaviours, remember that an eating disorder is never someone’s fault. Always try to understand their feelings, act without judgment, and help them to get the professional support they need.

What Are the Causes of Diabulimia

2020 study into the lived experience of 45 people who experienced diabulimia found that 78% reported weight loss as the main reason they started restricting insulin. 18% said that their behaviours were rooted in a hatred of diabetes and a desire to regain control of the condition, while 4% used restriction as a form of self-harm or punishment.

As with all mental health conditions, the underlying causes of diabulimia are often complex. The study found that experiences of trauma, parental separation, bullying, and feelings of shame played a role in the development of the condition. Stress and depression were the most common co-occurring conditions alongside diabulimia.

How Is Diabulimia Diagnosed?

The Diagnostic and Statistical Manual of Mental Disorders (DSM-5) doesn’t provide a separate diagnosis for T1DM. This means that a young person’s diagnosis will depend on their specific eating behaviours.

Insulin omission may be classified as a type of purging behaviour under a diagnosis of bulimia nervosa. If a young person is restricting both food and insulin, they may receive a diagnosis of anorexia nervosa. Diabulimia may also fall under the diagnosis of other specified feeding and eating disorders.

Diabulimia: Treatment and Recovery

Due to the complex emotional and physical roots of diabulimia and other eating disorders, effective support that addresses the multiple needs of every young person is crucial to lasting recovery. Health professionals should identify and treat the psychological causes of diabulimia as well as its physical manifestations. Young people typically require long-term treatment that offers space to heal from past traumas while developing healthy coping mechanisms for difficult emotions and building strategies to address disordered eating behaviours.

As part of their treatment, a young person should see an endocrinologist, a dietician with specialist knowledge of diabetes, and a mental health professional who specialises in eating disorders. While the most effective treatment for each young person will vary according to their unique needs, cognitive behavioural therapy – evidence-based therapy that focuses on the interactions between our thought and behaviours – often plays a central role.

Unequalled Recovery Experiences at The Wave Clinic

The Wave Clinic offers residential recovery experiences for young people from our specialist facilities in Malaysia. We focus on the holistic growth of every young person, addressing their multiple needs through individualised treatment programmes to promote lasting and meaningful change. We help young people to grow in self-confidence, develop lasting life skills, rediscover their dreams and achieve their full potential.

Our expert team of staff draws in highly-trained professionals from around the world who specialise in young people’s mental health. We offer specialist treatment for trauma, eating disorders, and addiction treatment. We include young people’s families in the process as much as possible, helping to build supportive relationships and offering reassurance to loved ones.

If you think your child may be struggling with diabulimia or another eating disorder, call us today. Eating disorders are serious and dangerous conditions; however, with the right support, a young person can turn their life around.

Fiona - The Wave Clinic

Fiona Yassin is the founder and clinical director at The Wave Clinic. She is a U.K. and International registered Psychotherapist and Accredited Clinical Supervisor (U.K. and UNCG).

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