T1 Diabetes and Eating Disorders
For some people, their relationship with food, eating and their body can start to become more of a problem. It can start to tip into a preoccupation with shape and weight alongside difficulties coping with strong emotions.
This can lead to patterns of avoiding food, binge eating, excessive exercising, restricting insulin or misuse of laxatives and vomiting. The good news is eating disorders in people living with type 1 diabetes are becoming much more understood and recognised within diabetes services, eating disorder services and the type 1 diabetes community.
If you are concerned about having an eating disorder you may feel a great deal of discomfort reading this resource and this is understandable. Being able to be honest with yourself and accept that you are having difficulties with eating is a really brave and important first step.
You may be reading this resource because you are concerned about someone else. If you are a family member or friend of someone with Type 1 diabetes then there is lots of useful information in this resource to help you understand more about eating disorders in the context of type 1 diabetes. At the end there are some useful links to other organisations and resources that might be of benefit.
How might Eating Disorders develop?
There is not one factor that causes an eating disorder to develop, it can be a combination of many things including social, emotional, and physical factors. There is evidence to suggest that living with Type 1 Diabetes is in itself a risk factor for disordered eating.
This is because, in lots of ways, the tasks of diabetes self-management can ‘teach’ or create a hyper-focus on some of the factors that are central to eating disorders developing.
The aspects of Type 1 diabetes that are thought to be linked to increased risks of developing an eating disorder include:
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Needing to carefully read food labels to calculate carbohydrates and insulin doses and use of apps to log food eaten. |
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A difficult relationship with your diabetes team where you might feel judged or criticized. |
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Having to eat to treat hypos which can affect weight and/or your emotions (guilt/shame). |
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Increased awareness of the body e.g. checking injection sites; visible technologies on the body etc.
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Diabetes stigma from people you know, strangers or in the media (especially about food and weight). |
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Weight checks and use of food diaries at diabetes appointments.
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Feeling shame over how diabetes is managed leading to secrecy. |
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Weight loss prior to diagnosis and weight restoration upon starting insulin. |
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A heavy focus on numbers and assumptions people make about the link between diabetes numbers and your efforts or value/self-worth. |
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Receiving compliments from others about weight loss. |
"I think having to eat sometimes when you don't want to, like after having a hypo. That can be difficult, that kind of forces you to ignore some of your hunger cues. Hunger cues was something that I really relied on for a while in recovery from my eating disorder. Then having to ignore that to manage hypos is quite difficult".
If you have previously had an eating disorder, the diagnosis of Type 1 can be seen as a risk because of the above factors. If this is something you are concerned about then raise this with your team so that you can think together about how you want your diabetes care (including diabetes education) to fit in with your strategies for maintaining recovery.
Types of Eating Disorders in T1D
People with type 1 diabetes are more likely to experience eating disorders than those in the general population, due to a mixture of reasons mentioned above. It's also important to know that eating disorders can affect people of all ages, genders and backgrounds.
See below to find out more about the most common eating disorders including T1DE (Type 1 diabetes Disordered Eating), you might also have heard this described as Diabulimia.
Anorexia Nervosa
Anorexia (or Anorexia Nervosa) – People with Anorexia are often of low weight due to limiting how much they eat and drink. They may develop “rules” around what they feel they can and cannot eat, as well as things like when and where they will eat. This high level of control can (in the short-term) feel rewarding and help the person cope with emotions they are finding difficult.
Concern about weight and shape can lead to a person over-checking their body, or on the other hand trying to avoid scales, mirrors and photographs. People with anorexia nervosa often hold a distorted body image, overestimating their body weight and size. They experience a deep fear of gaining weight, and will usually feel fearful of the suggestion that they should. As well as limiting how much they eat, they may do lots of exercise, make themselves sick, or misuse laxatives in an attempt to get rid of food eaten.
Bulimia Nervosa
Bulimia (or Bulimia Nervosa) - People with bulimia are caught in a cycle of bingeing, eating large (or sometimes smaller) quantities of food in a short period of time, then experiencing a strong sense of regret for doing it. They then try to compensate for overeating by purging e.g. vomiting, taking laxatives or diuretics, fasting, or engaging in exercise in a driven way with the goal of weight loss.
Binge eating is often a way to cope with emotions experienced as difficult. During a binge people with bulimia often describe not feeling in control of how much or how quickly they are eating and some people say that they feel disconnected from what they are doing. The foods and drinks consumed during a binge may include things the person had been avoiding or restricting.
Episodes of binge eating are often very distressing, and people may feel trapped in the cycle of bingeing and purging. People with bulimia place strong emphasis on their weight and shape, and may see themselves as much larger than they are and imagine that others judge them as harshly as they judge themselves.
Binge Eating Disorder
Binge Eating Disorder (BED) – In a similar way to Bulimia Nervosa people with BED will eat large amounts of food often in response to emotions experienced as difficult but will not follow this with purging actions.
A binge is often more food than most people would eat under similar circumstances, is done secretively due to an overwhelming sense of guilt and shame, and far from being enjoyable, binges are very distressing. Like with bulimia, people with BED often feel unable to stop during a binge even if they want to, and some people describe feeling disconnected from what they're doing, or struggling to remember what they've eaten afterwards.
T1DE
Type 1 Diabetes Disordered Eating (T1DE) – (Also termed ‘Diabulimia’ in some of the literature.) People with T1DE often overestimate their weight and size and are very concerned about gaining weight or becoming overweight.
People with T1DE will deliberately omit or reduce their dose of insulin (either directly, and/or indirectly by restricting carbohydrate intake to reduce their need for insulin) in order to achieve weight loss and /or to avoid weight gain.
Other features of T1DE might overlap with other eating disorders like Anorexia and Bulimia (e.g. food restriction, self-induced vomiting, laxative use and driven exercise). Fear of hypoglycaemia and diabetes distress and burnout are also often part of the picture of T1DE.
For further information about the different types of Eating Disorders you can visit the BEAT website.
Helpful support and information
The BERTIE website offers a free online module on Emotional Wellbeing, covering a range of important topics, including a deep dive into eating disorders in Type 1 diabetes, as well as diabetes distress, burnout, anxiety, and more. Sign up for free on the BERTIE website today!
BEAT is the UK national charity for those affected by eating disorders. The UK’s Eating Disorder Charity – Beat (beateatingdisorders.org.uk)
BEAT run a number of eating disorder online support groups for those with eating disorders and also for carers. You don’t have to have a formal diagnosis of an eating disorder to use any of the groups.
BEAT offer free, confidential Helplines are for anyone affected by an eating disorder. They’re open 365 days a year from 9am – midnight on weekdays and 4pm – midnight weekends and bank holidays. Trained advisors will listen without judgement and offer you guidance and support.
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England: |
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Scotland: |
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Wales: |
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Northern Ireland: |
DWED is the only UK charity to have existed in the UK to support and advocate for people that have type 1 diabetes and struggle with any kind of eating disorder. Sadly it ceased operating in 2022 but it’s webpage still exists with a number of resources available within it. http://dwed.org.uk/
Podcasts:
The Type 1 Diabetes and Disordered Eating Podcast. A podcast series hosted by Ariella Thompson, all about type 1 diabetes and disordered eating. The T1DE Podcast on Apple Podcasts
Video resources:
Supporting someone with diabulimia – Diabetes UK is a video of Dr Khalida Ismail, Consultant Psychiatrist, talking with a person with T1DE about how best to support someone with T1DE. https://youtu.be/ZELUnQk4pGo
Swimming with the T1DE – This film (created by Breathe Creative, in partnership with the All Wales Diabetes Implementation Group – AWDIG) raises awareness of the association between, and risks of, type 1 diabetes and eating disorders. Swimming with the T1DE
This resource was created by Dr Lindsey Rouse, a clinical psychologist working in the Diabetes and Endocrine Centre at Royal Bournemouth Hospital (UHD NHS Trust) and part of the BERTIE team.
