Type 1 diabetes with disordered eating (T1DE), also known as diabulimia, is a serious eating disorder that people with type 1 diabetes can develop.
What is diabulimia?
Type 1 diabetes with disordered eating (T1DE) or diabulimia is an eating disorder that only affects people with type 1 diabetes. It’s when someone reduces or stops taking their insulin to lose weight. This can happen alongside other behaviours such as restricting the food you’re eating, over-exercising, binging, making yourself sick and using laxatives to try to control weight. Some people don't stop or reduce their insulin but instead control their weight and shape through food restriction or over-exercise, which indirectly limits the amount of insulin required.
But when you have type 1 diabetes, you need insulin to live. So without it, there can be life-threatening consequences.
Diabulimia isn’t actually a real medical term, but it’s what people currently tend to call it. Healthcare professionals are now generally referring to the condition as T1DE.
Diabulimia is a serious condition
You may know that stopping taking insulin can make you lose weight. But you may not know what it’s called or that it’s an eating disorder. Friends and family members probably won’t have heard of it either. But diabulimia is serious and more common than people think. And like all eating disorders, it can affect both men and women. We've got lots more information about eating disorders and diabetes.
Like any eating disorder, this can be a tough subject to talk about. There are lots of reasons why diabulimia might develop too. But we’re here to explain all the facts, how it can be treated and where to get help if you need it. And if you’re worried someone you know is battling with diabulimia, we’ve got information to help you too.
Hear a definition of diabulimia from specialist in diabetes and mental health Khalida Ismail. She is Professor of Psychiatry and Medicine & Honorary Consultant Psychiatrist in Diabetes King's College London, King's College Hospital and Guy's and St Thomas' Hospitals, King's Health Partners.
Diabulimia and mental health
Diabulimia is serious. But it’s not a recognised mental illness in its own right. And because it isn’t widely understood, some healthcare professionals may not spot the signs or know how to support someone with it.
It can be frustrating if you can’t speak to someone who understands both the physical and emotional aspects of diabetes. But healthcare teams are getting better at joining up services so you’re able to get help with your mental health from someone who understands diabetes.
And it’s important to know that when you have diabetes, it's really important to speak to your healthcare team about how you're feeling or any changes in your behaviour.
"You're not on your own — it can be better, it feels like it can't, but you can live a normal life with diabetes." Lynsey
There are lots of reasons diabulimia may develop. It’s often not just down to one thing – it might be a combination of physical, social and mental health problems. When you have type 1, the things you need to do to manage it can play a part in setting off diabulimia, like:
- having to carefully read food labels
- being constantly aware of calories or carbohydrates in your food
- the focus on your weight when you go to the clinic
- losing a lot of weight before a type 1 diagnosis and regaining the weight when starting medications
- having to eat to treat hypos, which can cause weight gain and guilt
- feeling shame over how you manage your diabetes
- a bad relationship with your healthcare team
- difficulty keeping to a healthy weight.
We don’t know exactly how many people are living with it. It is estimated that up to 30% of people with type 1 diabetes have an eating disorder. Eating disorders are twice as common in people with type 1 diabetes than people without the condition.
When you’re diagnosed with type 1 diabetes, you’ve generally lost weight. Starting insulin can mean you put that weight back on. Some people can find this hard to deal with and this can be one of the reasons they start to skip doses.
Without insulin, your blood sugar levels build up really quickly. This is known as hyperglycaemia (or hyper) and you start going to the toilet a lot. Any calories you’re taking in pass straight through and out of the body in your urine.
This means you can’t get the energy you need from food and you start to break down body fat instead. This leads to dramatic weight loss.
If you don’t get any or enough insulin, your blood sugar levels won’t come down. This is very dangerous and it can send you into diabetic ketoacidosis (DKA) – which can be fatal.
And if you regularly stop taking insulin for a long time, you will harm your body. You could lose your sight, damage your kidneys and damage the nerves in your feet. These are called diabetes complications. They can happen because high blood sugar levels are damaging your blood vessels.
It can be difficult to break out of the harmful cycle of not taking your insulin. But with the right help and support, you can recover from diabulimia.
Diabetes teams, GPs and eating disorder specialists are becoming more aware of diabulimia. Diabulimia needs careful treatment from a team of specialists. And some dedicated recovery programmes are now up and running in the UK. So you could be referred to an eating disorder clinic or a counsellor for specialist care. The charity Beat Eating Disorders (Beat) has information on seeking treatment for an eating disorder.
Take a look at our information on eating disorders and diabetes for other services and support that might be helpful to you.
The first step to recovery is asking for help. Hear from Lynsey on how she managed to start her recovery.
It’s not always easy to manage diabetes. And coping with an eating disorder like diabulimia can make it even harder. You may also feel bad about hiding it from the people you care about.
But you’re battling a serious condition and no one can do that alone. It doesn’t mean you’re a weak person. Everybody with diabetes has their ups and downs. You’ve managed your diabetes well in the past, but now you’re not able to. So you need help.
"It's easy to say, but speak to someone. If you don't speak to someone it just gets worse. You'll feel better when you acknowledge it's a problem. I felt I'd got into such a deep hole with not managing things that it would be impossible to change that around, but the right people can help you get there." Lynsey
Asking for help can feel difficult because you know this is the start to facing up to and dealing with the problem. But you won’t be doing it alone.
Once you’ve shared the difficulties you’re having, you can take the next step when you’re ready – and that’s getting advice and treatment from a healthcare professional.
Talk to someone you trust. This could be a friend, a parent or sibling, a flat mate, a colleague, or a member of your healthcare team. Their response may surprise you. People who care about you will want to help even if they don’t understand what you’re going through. They will worry less if they know you’re being honest with them.
You could also ask a family member or friend to go to a healthcare appointment with you.
"Speaking to your friends or family is more powerful than you can imagine. If you’ve not been telling them and then you tell them, it’s a massive weight off your shoulders. Activating support you’ve already got, and realising there are people out there who care about you and love you and want to help. You might find that more powerful than looking for the expert as a first step." Professor Khalida Ismail
Call our helpline
If you’d rather speak to someone you don’t know, call our helpline. Our trained advisors are here to listen.
If you have type 2 diabetes and you take insulin to treat it, the consequences of not taking insulin are often not the same. So that’s why we talk about diabulimia only affecting people with type 1. But we know people with type 2 and other types of diabetes can struggle with other eating disorders. If that’s you, we know asking for help can be difficult. But opening up to someone you trust will mean you’re not alone with it. And it can be the first step in getting the help you need.