The BBC Three documentary ‘Diabulimia: The World’s Most Dangerous Eating Disorder’ is a harrowing, hard-to-watch account of three young women struggling to rebuild their lives. It’s also compelling, essential viewing that necessitates acknowledgement amongst diabetes and medical communities.
Diabulimia is a term coined to represent diabetic bulimia, which is defined as the intentional skipping of insulin injections to avoid weight gain. Because insulin acts as a storage hormone and promotes fat, avoiding injections leads to weight loss. The consequences are severe, though. Doing this can raise blood sugar levels dangerously high, risking complications of the kidneys, feet and blood vessels. It can even lead to blindness.
Diabulimia has become one of the most serious emerging problems in recent years among young people with type 1 diabetes, mainly girls. It is not yet officially recognised as a medical condition and expert understanding is limited. Consequently, there is a dearth of treatment options, and access to information and support for diabulimia is hard to come by. In some cases, help arrives too little too late.
Right off the bat, this BBC documentary is wholly commendable. It’s not meant to be enjoyable. It’s at times very uncomfortable. But the core mission was to raise awareness of diabulimia, and the filmmakers certainly accomplished this.
We follow three girls recovering from diabulimia, all at different stages of their recuperatio, all desperate to get better.
We’re first introduced to Gemma, 22, a young mum diagnosed with type 1 diabetes aged 12 who is awaiting transfer to an appropriate care ward. Gemma has been sectioned and requires constant supervision from a healthcare worker.
Nabeelah, 21, was diagnosed with type 1 diabetes aged 16. Her parents know she is skipping insulin, but she is reluctant to speak about it. She says: “A reason why in different cultures it’s not really spoken about is because it’s not admirable to have a mental illness or an eating disorder.”
Then there’s Becky, 29, who requires crutches to walk such is the severity of damage to her feet, caused by prolonged high blood glucose levels. She is beginning to rebuild her life a year and half on from being at the brink of death.
The BBC also speaks to three leading campaigners for better diabulimia care in the UK.
Professor Khalida Ismail is the lead psychiatrist for diabetes at King’s Health Partners who runs a diabetes and eating disorders clinic in London. Ismail says: “What is difficult is that a lot of diabetes teams might not have the expertise or the skill set to carry out the assessments and know how to ask patients about this problem. And even when they do the services may not exist and neither does the research evidence as to how best to support these people.
“I have heard of patients that have died while waiting for the right care.”
Dr Jane Morris is lead Psychiatrist at The Eden Unit in Scotland which, as far as she is aware, is one of the very few units in the UK which has been able to take on and treat people suffering with an eating disorder with type 1 diabetes.
We also meet Jacquelin Alle, founder of the charity Diabetics with Eating Disorders (DWED), which she started as a charity in 2009 when her friend died of an eating disorder ward “surrounded by doctors who didn’t really understand how to help”.
Nabeelah attends a DWED meeting nearby. This is the first time she has spoken to other people with the condition. This isn’t surprising having observed her dad’s reaction to Nabeelah’s mother addressing to camera that she thinks her daughter has an eating disorder. Nabeelah’s father, Kibria, says: “She’s got this? An eating disorder? Why do you say that?”
This lack of communication between the family is made all the more disconcerting when juxtaposed with Nabeela’s one-on-one honesty to the camera. She says her feet hurt regularly, she gets headaches and she has kidney pain. Yet her family are none the wiser.
This culminates in a staged garden bench conversation between the three of them. It’s extremely awkward; almost as if it’s the first time they’ve all spoke together. “Are you wishing you didn’t have diabetes?” Nabeelah’s dad asks. Nabeelah shakes her head. “Do you think by taking insulin you put on weight? Is that the main matter?” Nabeelah responds coyly, not wishing to reveal herself. It’s a frustrating resolution to the family’s story, but at least they appear to be on the right track.
By the end of the documentary all three girls are ostensibly heading towards brighter futures. Nabeelah has applied to volunteer with a mental health charity, Gemma is given a bed in an inpatient eating disorder unit and is able to receive visits from her daughter, and Becky is participating in physical therapy to recover strength in her feet.
“I take every day as it comes because I don’t know how I’m going to be when I wake up in the morning,” says Becky. “The minute you wake up you think ‘I’ve got to do my blood sugars’. You don’t get a day off. Every day is all about numbers. And it’s all about numbers with an eating disorder.”
Healthcare professionals need to view this film to realise the fatal damage diabulimia can have. It is a mostly unstudied, complex condition which requires treatment options a world away from what is currently on offer. It is with the greatest of optimism that this documentary serves as a wake-up call to raise awareness of diabulimia throughout the medical community.
Diabulimia: The World’s Most Dangerous Eating Disorder is available to watch on BBC Three’s iPlayer channel now.
Diabetes.co.uk is currently working with DWED to improve the online support available for people with diabulimia. Our Diabetes Forum thread ‘Eating disorders and diabetes’ is a safe place for you, or a loved one, to learn more about diabulimia, how it has affected sufferers and to read about people who have overcome it.