‘T1DE’ (which stands for type 1 diabetes and disordered eating) or ‘diabulimia’ to refer to the experience of having an eating disorder while living with type 1 diabetes. While ‘T1DE’ is not currently listed as a formal medical diagnosis, it is increasingly recognised, for example, in guidelines published on Managing Medical Emergencies in Eating Disorders. It has also been referred to as ‘diabulimia’, but T1DE is used to capture the different symptoms someone may experience.
People living with T1DE may restrict their insulin to attempt to control their calorie intake and weight. People may also engage in other eating disorder behaviours, such as restricting their intake, over-exercising or by purging (for example, by vomiting or taking laxatives or diuretics).
For someone with type 1 diabetes, restricting insulin can be dangerous. Other medical risk factors include the management of hypoglycaemia (or low blood sugar level), starvation, and other purging behaviours such as vomiting, laxative misuse and exercise.
Having type 1 diabetes can involve biological and psychological implications which may lead to you having a higher risk of developing an eating disorder.
Some reasons for this increased risk of developing an eating disorder may include, for example:
Hypoglycaemia is the term for when the level of sugar in your blood drops too low.
Some symptoms of low blood sugar which you may experience might include feeling disorientated or shaky, difficulty thinking clearly, feeling hungry or tired, sweating, looking pale, a fast pulse or heart palpitations or having a headache. This can be dangerous and, if it is not treated, severe low blood sugar can lead to loss of consciousness or death.
You can find out more information about this on the NHS website [1].
Having type 1 diabetes with an eating disorder can lead to disruption in many areas of your life, including work, education and social interactions. You may experience social withdrawal or conflict in relationships with family or friends.
Feelings of low self-worth and shame around your eating disorder are also common, and you may worry that health care professionals might judge you. Even so, it’s important to seek help if you experience any symptoms of T1DE, because the sooner you can receive treatment for your eating disorder, the greater the chances of recovery.
It can be common for people with T1DE to also experience other conditions such as depression, anxiety and diabetes stress. Research has also shown that some people with type 1 diabetes may respond less positively to conventional eating disorder treatment [2].
Treatment adapted for people with eating disorders living type 1 diabetes is still in the early stages of development. However, it has been agreed that people who deliver treatment for T1DE should ideally have knowledge and understanding in treating both eating disorders and type 1 diabetes.
t’s important that health care professionals know about these risk factors when working with people with type 1 diabetes. Knowing how to spot the signs of an eating disorder, and address these risk factors in people with type 1 diabetes can help to prevent eating disorders and intervene early. You should also use sensitive language in consultations for diabetes, particularly when communicating messages around weighing and glucose management.
A parliamentary inquiry into type 1 diabetes and disordered eating made a number of recommendations about improving care for people with T1DE to save lives and reduce long-term costs.
This video raises awareness of the association between, and risks of, type 1 diabetes and eating disorders. Swimming with the T1DE
The film was created by Breathe Creative in partnership with 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.
You can search our HelpFinder service to see accredited counsellors and therapists in your area.
Self-help and support groups where you’re able to talk to others going through similar experiences can be useful to both people with eating disorders and their families throughout treatment and in sustaining recovery. You can search our HelpFinder service to see what’s available in your area.
Beat’s free, confidential Helplines are here for you.
You can also join one of our online support groups, which are anonymous and give you the opportunity to speak to people going through similar experiences to you.
If you’d like to find face-to-face support in your area, you can use our HelpFinder service to see what’s available.
An eating disorder diagnosis helps clinicians decide the best treatment pathway. If you are not sure you have been given the right information or have been denied treatment our Overturning Bad Decisions (and understanding good ones) page can help you understand your options.
16 November 2023
Our supporter Lucy discusses living with Type 1 Diabetes & an eating disorder, sharing her experiences of recovery and hope
Read more[1] NHS Online. ‘Low Blood Sugar – Hypoglycaemia’. Available from: https://www.nhs.uk/conditions/low-blood-sugar-hypoglycaemia/ (Accessed 16.12.2021)
[2] Custal N., Arcelus J., Aguera Z., Bove FI., Wales J., Granero R., et al. Treatment outcome of patients with comorbid type 1 diabetes and eating disorders. BMC Psychiatry. 2014; 14:140. Available from: doi:10.1186/1471-244X-14-140.
[3]Alicia S., Bennett M., Brewster S., Cross C., Figueiredo C., Hampton K., Nicholson E., Partridge H., Pinder C., Rouse L., Stacey N., Thompson A., ‘A Guide to Risk Assessment for Type 1 Diabetes and Disordered Eating (T1DE); medical, psychiatric, psychological and psychosocial considerations’ Wessex ComPASSIONTteam (2021) [Unpublished].