If you’re worried a friend or family member with type 1 diabetes has an eating disorder like diabulimia, here’s how to spot the signs and where to get support.
Type 1 diabetes and eating disorders
Type 1 diabetes with disordered eating or T1DE, also known as diabulimia, is when someone with type 1 diabetes deliberately stops taking their insulin to lose weight. This makes their blood sugars very high for long periods of time and puts them at risk of life-threatening complications. Here we’ll take you through how to spot the signs in someone you know and how to begin talking to them about it and where to find support for diabulimia.
Diabulimia is a serious mental health condition. And coping with that on top of diabetes can be very frightening. We’ve got lots more information to help support you if you’re living with diabulimia yourself.
What's the best way to support someone with diabulimia? Hear from Lynsey, her mum and psychiatrist Khalida who specialises in diabetes and mental health.
It can be very difficult to tell if a friend or family member has developed an eating disorder like diabulimia. People affected by the condition tend to hide it, often very well.
There are some signs that might suggest someone has a problem and isn’t taking their insulin:
- losing weight, or their weight’s going up and down
- a high HbA1c
- going into hospital a lot with diabetic ketoacidosis (DKA) or high blood sugar levels
- developing complications of diabetes when they’re young
- injecting in secret or not wanting to inject
- not testing blood sugar levels or not wanting to test
- not wanting to be weighed at the clinic
- missing diabetes appointments
- feeling depressed or anxious
- for women — irregular or stopped periods, or a delay in periods starting
- changes in appetite
- obsessing about counting calories.
But not everyone with diabulimia will show all of these signs. And it’s important to remember that sometimes they’ll get some of these signs for other reasons. It might be down to growing up and developing. Or it could be they’re still learning to look after their diabetes. Or they may just feel that diabetes is getting on top of them.
How to talk about diabulimia
If you’re worried that a friend or family member has diabulimia, it can be difficult to know how to talk to them about it.
You’re probably worried about bringing the subject up because you don’t want to make anything worse or say the wrong thing. You might feel angry or disappointed because you can see the danger they’re putting themselves in. Or you may despair because you think you can’t help them.
It’s completely natural to want to ignore it and hope it will go away. But diabulimia is really serious, and can make someone very sick very quickly — people have even died of it. So it’s best to bring it up if you’re worried.
You know your friend or family member well, so you know how best to bring things up with them. Here are some tips to help too:
- prepare what you’re going to say
- find a time when you’re not cross or upset with them, and you know you’re not going to be interrupted
- don’t judge or blame them — let them know that you’re talking about it because you care about them and you’re worried.
"You might say to them — I wonder if you're worried about your diabetes. Turn it round. Don't say I'm really worried about your diabetes or I'm really worried about you. That won't work."
Khalida Ismail, 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.
Try not to feel like you’ve failed if they deny there’s a problem, or upset if they get angry with you. It might be because they’re ashamed of what they’re doing or want it to stay secret. But at least you’ve opened the door. It might spark something in them — if not now, sometime in the future. And you’ve showed you care about them.
They might be relieved that you’ve noticed — they might desperately want help but not know how to ask for it.
"Even if mum had just asked me if I wanted her to help me work out my carbs or something like that - someone taking the pressure off that." Lynsey
Support for someone coping with diabulimia
Encourage your friend or family member to talk to their doctor or nurse. Offer to go with them for support. It’s important they get help and treatment for their diabulimia because it’s really difficult to get through it by yourself. Reassure them they aren’t alone in this.
If they don’t feel they can speak to a healthcare professional yet, they might want to call our Helpline. Or the charity Beat Eating Disorders (Beat) offers help to anyone with an eating disorder. There’s a helpline, web chat and lots of information including how to get help and treatment. First Episode Rapid Early Intervention for Eating Disorders (FREED) is a service for 16- to 25-year-olds who have had an eating disorder for three years or less.
Take a look at our information on eating disorders and diabetes for other services and support that might be helpful to you. We also have more information to help someone understand diabulimia and how to start on the road to recovery.
Support for you
Dealing with the issues your friend or family member is facing can be difficult for you too. You may want help and support — you’re not alone in this either.
You can call our Helpline, which has trained advisors to listen and offer advice if you need it.
You could also think about getting in touch with Beat Eating Disorders (Beat) or First Episode Rapid Early Intervention for Eating Disorders (FREED) for help and support.