newsbeatExplains
Katie Edwards

Diabulimia - the eating disorder you haven't heard of

One in three young women with type 1 diabetes is thought to be struggling with their weight
Stacey
BBC

Type 1 diabetes is when the body doesn't make its own insulin and is unable to control how much sugar there is in the blood. 

Around 400,000 people in the UK live with condition according to JDRF, the charity dedicated to type 1 diabetes research.

Stacey Williams was diagnosed with type 1 diabetes in 1997 when she was just six. She's now 25.

"It was difficult to come to terms with. To be told you can't have sweets and chocolates like other children have is very difficult."

"Things changed when I was about 15 years old. I was at school and being bullied because of my weight," Stacey tells Radio 1 Newsbeat.  

'Diabulimia' can have harmful lasting effects such as blindness, kidney problems, hair loss and early death
Stacey Williams
Stacey Williams
"I started to skip my injections to become ill, to be taken away from school so I didn't have to face those bullies every day," says Stacey

The term "diabulimia" is not yet medically recognised but the term means diabetic people who deliberately take too little insulin in order to lose weight. 

"When I started to lose the weight and get the compliments it fuelled the diabulimia even more. The more compliments I got the more weight I wanted to lose," she explains. 

"I started to wear clothes that I didn't think I'd be able to - going from a size 16 to a size eight felt fantastic for me.

"I wasn't thinking about the long-term damage that it could actually cause."

"I did lose a lot of hair. I now have to wear a hair weave to hide the bald patches. My vision will never be the same again"

Stacey Williams

"I missed a lot of school going into hospital. I'd go in once a fortnight every couple of days. 

"It was very difficult to change my thought process and behaviours." 

  For more information and support around eating disorders you can look at these BBC Advice pages.   

'I feel so FAT. Everyone looked great today but me. I threw up my food today'
Lisa and Katie together
Katie Edwards
Two sisters together - Lisa and Katie before Lisa became seriously ill

Lisa Day was diagnosed with type 1 diabetes when she was 14. 

She died on 12 September 2015 after years of suffering with diabulimia. 

Lisa started writing the diary just after she was diagnosed with type 1 diabetes in September 2001.

Extract from Lisa's diary
BBC

Lisa's older sister Katie Edwards has been looking through the diary her sister wrote just after she was diagnosed. 

Flicking through the pages, Katie describes Lisa: "She was my younger sister. She was fun, but serious at times. She had a lot of friends. 

"She loved life but you could tell that there was something deep down that was troubling her. "She always had a bit of a sad shadow following her around."

'There's always going be a temptation to carrying on skipping because I was so used to doing for so many years'
Stacey Williams
Stacey Williams
Stacey says she was called things like "Shamu the whale and piggy"

Stacey is now 18 months into her recovery. 

"It took a while to actually seek help - I tried to do it on my own - do my injections by myself but it wasn't until I realised that 70% of my vision went temporarily in my left eye and I realised I couldn't do it alone.

My team didn't use the term diabulimia but advised me there were a lot of patients going through the same thing

Stacey Williams

She knows there's still a battle ahead but she now feels positive about the future.

"There's always going be a temptation to carrying on skipping because I was so used to doing for so many years. 

"But the effect it's had on my health and my family and my eyesight, I would never go back to doing that again." 

Until now people in the UK with diabetes and an eating disorder have been able to seek help for one or the other, but never together
Stacey
BBC

Professor Khalida Ismail, who leads the UK's largest diabetes and mental health clinic at King's College in London, wants that to change. 

She's hoping to get psychiatrists and diabetes experts to work together.

"They never meet patients together and it's an inefficient use of current resources," she explains. 

This is probably bigger than we think

Professor Khalida Ismail, King's College, London
Professor Khalida Ismai
BBC

"I would argue we'd actually be saving money by joining up services," she adds.

"There is an awareness that this is probably bigger than we think, no-one really knows how big it is or how to detect it," says Prof Ismail.

The UK's first ever diabetes and eating disorder service has now launched
Finger-testing kit
Science Photo Library

The UK's first ever diabetes and eating disorder service has now launched at King's College in London.

And a new set of guidelines for the treatment of eating disorders, which includes how best to treat those who also have diabetes, is expected to be released by the National Institute of Health and Care Excellence (Nice) in early 2017.

The charity, DWED (Diabetics With Eating Disorders) has been campaigning to have the omission of insulin for weight loss officially recognised as a mental illness. 

"There is an awareness that this is probably bigger than we think, no-one really knows how big it is or how to detect it," says Prof Ismail.

There's a forum specifically for people with diabulimia

For more information on diabetes you can look at these BBC Advice pages. 

Story by Tracy Ollerenshaw. Edited and produced by Anna Doble

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