Disordered eating and type 1 diabetes: Unmet need highlighted in a new UK report

People living with type 1 diabetes (T1D) are more likely to experience mental health challenges compared to those without diabetes. This includes disordered eating and eating disorders: those with T1D are 3-4 times more likely to experience these conditions.

Eating disorders include anorexia, bulimia, binge eating disorders, and insulin omission or restriction to lose weight, commonly referred to as “diabulimia.” Eating disorders are serious in any individual but are particularly dangerous to people living with T1D. In particular, insulin omission can induce hyperglycemia or diabetic ketoacidosis (DKA) (dangerously high blood glucose levels), which can be very dangerous, in some cases leading to severe diabetes related complications, coma, or death.

The close relationship and strict monitoring of food, such as carbohydrate counting, required as part of T1D management can cause stress that may increase the tendency to develop eating disorders in people with T1D. As well, existing treatments for eating disorders may not be ideally suited for people living with T1D, as there are many special considerations, such as the fact that starting or changing insulin treatment can result in weight gain. Accompanying this, there are often feelings of guilt and shame associated with living with a condition that requires careful self-management, and people living with T1D are further at a greater risk of experiencing depression, anxiety, and diabetes distress – a clinical condition that refers to the negative emotions that comes with the burden of diabetes self-management. Although nearly 1 in 5 children with T1D show signs of disordered eating, the signs are often missed.

On January 23, 2024, a Parliamentary Inquiry report in the United Kingdom on the risks of type 1 diabetes eating disorders (T1DE) was released, chaired by Global Health Ambassador The Right Honourable Theresa May MP and The Right Honourable Sir George Howarth MP, both who have a personal connection to T1D.

The parliamentary inquiry, funded with support from JDRF International, identified several systemic gaps and barriers that fail to provide effective support and care for people affected by T1DE (type 1 diabetes specific eating disorders). This includes gaps in diagnostic criteria and terminology for T1DE, the effect of stigma, limited research and evidence in this area, lack of knowledge and training of healthcare professionals, and lack of funding and access to mental health providers and eating disorder support services. There are clearly many areas that must be addressed to improve the experiences of people who are affected by T1DE.

A clear finding from the report is the need for integrated mental health support into diabetes care, with a recommendation to introduce mental health checks along with the existing physical health checks and screening during annual diabetes care appointments, and a need for mental health providers to have training on diabetes and T1DE. People living with T1DE often receive mixed messages and advice from different care providers with conflicting care plans. This latter finding suggests a need for greater communication, collaboration, and integration of different health services within health systems.

Sara, who lives with type 1 diabetes and T1DE, in the Parliamentary Inquiry report shared:

“I was diagnosed with type 1 diabetes at the age of three in 1990 and have had no psychological support in those 32 years. The expectation of how I was supposed to control my diabetes was so high from other people it was unachievable and unrealistic. I couldn’t reach perfect, so the only thing I felt I could achieve was being uncontrolled, so I developed an eating disorder and that became a coping mechanism. My first signs of T1DE were in year eight of secondary school, where I started omitting insulin, and things got worse after leaving pediatric care, as I struggled with bulimia as many as four times a day. I would hide how I felt but underneath my smile I hated myself, my body and the stress that my type 1 diabetes caused my loved ones. By omitting insulin, I could numb the relentless burnout that managing type 1 diabetes brought. I could also eat any food I wanted, and without taking insulin, I would lose instead of gain weight.”

As research is lacking in this area, JDRF International has identified T1D and eating disorders as a key priority and are currently funding three projects to support this. These projects will explore innovative interventions, testing the efficacy of an Acceptance and Commitment Therapy (ACT) intervention delivered via a mobile app, a guide for healthcare providers to see warning signs of eating disorders, and a virtual eating disorder prevention program. This research will support reducing gaps in evidence and interventions for people affected by T1DE.

What can we learn from this report?

  • Greater investment in research in the area of T1D and disordered eating is needed to generate evidence-based best practices
  • Evidence needs to be integrated into practice – this means training our health teams to recognize early signs of T1DE and explore prevention initiatives
  • There is an opportunity for greater collaboration and communication among healthcare providers and care teams to improve patient care
  • Funding in mental health is sorely needed to allow people living with T1D the ability to have improved access to mental health treatment
  • Greater awareness of T1DE and the experience of stigma in diabetes and eating disorders must be addressed

What does this mean for Canadians with T1D?

Since JDRF Canada launched its mental health strategy in late 2021, we have been working to close gaps in mental health and T1D by creating the Mental Health + Diabetes Training Program to train mental health providers to have a greater understanding of diabetes, and recognize the need to further support eating disorders in this area. In late 2023, we co-hosted a webinar with the National Eating Disorder Information Centre (NEDIC) to introduce this important topic to healthcare professionals.

The Parliamentary Report recognizes the important role that peer support can play in treatment and recovery of T1DE, and “recommends the availability of in-person and online moderated peer support”. JDRF Canada is currently funding research in mental health and some studies are working to address the vulnerable years of transitioning from pediatric to adult care. These research projects are exploring peer support as a mechanism of reducing the feelings of isolation that often arise from living with a chronic condition, and to explore what impact that may have on mental health and diabetes related distress. As the risk of developing eating disorders is especially high during teenage years, it is vital that positive emotional and social support are made available during this time.

If you live with T1D, or have a loved one who does, and are struggling with disordered eating, or are restricting insulin to manage your weight, know that you are not alone, and reach out to your diabetes care team or someone else you trust. Help is available. Finding a mental health provider that is knowledgeable about diabetes can also help.

Supports and Resources

Stay connected on the latest