While diabulimia is not yet a medically recognised condition, that doesn’t mean it’s not dangerous - over time, restricting insulin to lose weight can cause irreparable damage to the body, including organ failure which can lead to death.
What is diabulimia?
Diabulimia is where a person with diabetes restricts their insulin deliberately to control their weight. According to Jacqueline Allan, researcher at University of London and founder of DWED (Diabetics with Eating Disorders), it’s estimated that 40% of women aged 15-30 with Type 1 diabetes do this.
There are many reasons why someone might not take as much insulin as they should, according to Diabetes UK, like fear of hypoglycemia (where blood sugar levels drop too low) or underestimating carb count, but deliberately doing it to lose weight is classed as diabulimia.
How does it affect the body?
When someone with Type 1 diabetes restricts the amount of insulin they need, glucose levels build up in the blood. Over time, this can lead to abnormally high levels of blood sugar.
These abnormally high levels, known as hyperglycemia, make people go to the toilet a lot, meaning any calories taken in from food are passed straight out of the body in the urine.
“As a result, the calories are not used and the body is starved of its source of energy - energy that’s needed for every organ to function,” reads the Diabetes UK site.
If hyperglycemia is left without treatment, complications linked to diabetes - such as retinopathy, neuropathy and nephropathy - appear more quickly.
What’s even more concerning is that diabetes patients can develop DKA (diabetic ketoacidosis), where the body starts to break itself down to try and gain energy.
If left untreated, DKA can cause heart and organ failure, proving fatal.
According to DWED, a national charity set up to directly address diabulimia and other eating disorders in those with Type 1 diabetes, there are many symptoms associated with the illness, including general symptoms associated with anorexia and bulimia, and specific symptoms relating to insulin abuse.
Diabulimia is still not officially recognised as a medical condition, however DWED has worked with people who had diabulimia to list the symptoms they commonly experienced. These include:
:: Severe fluctuations in weight or severe weight loss
:: Recurrent episodes of DKA/hyperglycemia
:: Frequent hospitalisation for poor blood sugar control
:: Delay in puberty or sexual maturation
:: Irregular periods or no periods at all
:: Frequent trips to the toilet
:: Frequent episodes of thrush or urinary infections
:: Nausea and stomach cramps
:: Loss of appetite
:: Drinking an abnormal amount of fluids
:: Hair loss
:: Delayed healing from infections and bruises
:: Dehydration and dry skin
:: Dental problems
:: Blurred vision
:: Fractures or bone weakness
:: Anaemia and other deficiencies
:: Early onset of diabetic complications
:: Depression, anxiety or a co-existent mental illness
:: Anxiety or distress over being weighed at appointments
:: Frequent requests to switch meal plans
:: Fear of hypoglycemia (when blood sugar levels go too low)
:: Fear of injecting or extreme distress at injecting
:: Injecting in private or insisting on injecting out of view
:: Avoidance of diabetes-related health appointments
:: Lack of blood sugar testing or reluctance to test
:: A fundamental belief that insulin makes you fat
:: Assigning moral qualities to food (i.e. good for sugars/bad for sugars)
:: An encyclopaedic knowledge of the carbohydrate content of foods
:: Persistent requests for weight loss medications
Early treatment is vital
“Diabulimia requires treatment from a team of specialists and if the signs and symptoms of diabulimia are spotted early it is possible to recover from it,” a spokesperson from eating disorders charity Beat told HuffPost UK.
One person who knows how crucial accessing early treatment is for people with diabulimia is Patricia Carroll, whose daughter died from organ failure as a result of prolonged insulin abuse.
Patricia’s daughter Natalie was diagnosed with Type 1 diabetes when she was just eight years old. In her teens, she was called names because of her weight - it was at this point that she realised she could cut back on insulin to slim down.
Over time, Natalie’s weight dropped to a dangerously low level and she was sectioned under the Mental Health Act in a local psychiatric unit, where specialists monitored her insulin intake and helped her gain weight.
But not long after she became ill again. Her mum told HuffPost UK: “The problem with the anorexia, which is to do with the mind, was never addressed.”
When she realised her daughter was falling back into old, and dangerous, habits, Patricia sought help for her daughter at a clinic in Norwich which helped patients with eating disorders build better relationships with food.
While the mental aspect of the illness was addressed there, the physical impact had gone past the point of no return. Months later, Natalie was told she had kidney failure and would need a transplant, but sadly she was never well enough to undergo the operation. She died on 1 January 2014 at the age of 38.
Diabulimia may not be a medically recognised condition just yet, but some progress has been made in raising its profile. Changes to guidance used by healthcare professionals mean that insulin omission is now considered to be a clinical feature of anorexia and bulimia.
Awareness of the problem is also growing, albeit slowly. “More and more diabetes units are becoming familiar with diabulimia, and so are GPs and eating disorder specialists,” reads the Diabetes UK site.
One clinic that specialises in treatment for diabulimia is The Recover Clinic in Kensington, London. The clinic assesses patients individually, creating a program to meet their needs. This might comprise one-to-one counselling, cognitive behavioural therapy (CBT), creative therapy or nutritional consultations.
Unfortunately, in a country where there are 400,000 people living with Type 1 diabetes and 725,000 struggling with eating disorders, places like The Recover Clinic are few and far between.
Professor Khalida Ismail leads the largest diabetes and mental health clinic in the UK at King’s College in London. She starred in BBC Three’s documentary ‘The World’s Most Dangerous Eating Disorder’ on 24 September and called for greater awareness of the condition, as patients are “falling through the net”.
Patricia Carroll, who lost her daughter to the illness, agrees. “More information needs to be put out there,” she said.
Jacqueline Allan, founder of DWED, said the first step towards improving rates of diagnosis is for the illness to be recognised as a medical condition in its own right.
“Diabulimia is extremely dangerous,” she told HuffPost UK. “Part of the issue is that because it is not a recognised medical condition there are no accurate statistics on just how deadly it is.
“When we die it is recorded as being from complications arising from diabetes, not an eating disorder.”
Useful websites and helplines:
- Beat, Adult Helpline: 0808 801 0677 and Youthline: 0808 801 0711 or email firstname.lastname@example.org
- Samaritans, open 24 hours a day, on 08457 90 90 90
- Mind, open Monday to Friday, 9am-6pm on 0300 123 3393
- DWED, seek support via a diabulimia online forum or visit the website.
- Diabetes UK helpline: 0345 123 2399.