If you’ve never heard of diabulimia, you’re certainly not alone, and given that the term applies to Type 1 diabetes patients that also suffer with an eating disorder, it’s not a subject of discussion in the general population in the way that other eating disorders such as anorexia nervosa, bulimia and even orthorexia are in the current day. It’s even yet to be recognised as an official condition in the medical community, but given the available stats on the subject, it’s time we all, and not just sufferers, started to talk. With 400,000 people living with Type 1 diabetes in the UK, and research suggesting that at least forty per cent of women in this group between the ages of 15-30 also suffer with an eating disorder (a Canadian study puts this at more like 60 per cent) we’re beginning to see the bigger picture of how diabulimia can affect many families up and down the country and around the world, often tragically. Here’s how the disease can start, its symptoms and what’s slowly being done to shatter the silence around the most deadly eating disorder of all.
What is diabulimia?
Diabulimia is a portmanteau of ‘diabetes’ and ‘bulimia’, and according to Diabetes UK “it is used to describe the situation where somebody deliberately and regularly reduces the amount of insulin they take due to concerns over their body weight and/or shape.”
Diabetics need insulin in order to survive, as their bodies do not produce insulin naturally to control the amount of glucose in their blood. Omitting insulin regularly can result in hyperglycemia, when glucose levels in the blood become too high, and the body reacts by dispelling sugar (therefore, calories) in the urine. Hyperglycemia can trigger diabetic ketoacidosis, which is when the body starts breaking down fat and muscle as alternative energy sources. This causes weight loss, migraines and dizziness but can also lead to permanent organ and nerve damage, blindness, limb loss, and if left untreated, it can be fatal.
Who suffers from it?
As is the case with many eating disorders, the condition mainly affects women, but as Jacqueline Allan, a researcher at Birkbeck University of London and founder of the charity Diabetics with Eating Disorders points out, research indicates that that “men with Type 1 diabetes have a higher drive for thinness than their non-diabetic counterparts, making them more susceptible to diabulimia.”
Why is it in the media?
It may seem like a “niche” condition, but a recent documentary aired on BBC3 emphasised not only how little is currently known about the disease in the contemporary medical sphere, but how truly life-threatening it can be. Following three women at different stages of the disease, and interviewing the sister of Lisa, a sufferer who died due to the effects of diabulimia at the age of just 27, the programme highlighted the lack of understanding, resources and support for both diabulimia sufferers and medical staff.
What are the symptoms of diabulimia?
Diabulimia crosses the boundary of being both a chronic physical disease and mental illness, and depending on the patient, the NHS highlights that the following symptoms may apply to diabulimia sufferers:
- Recurrent episodes of hyperglycaemia
- Recurrent episodes of hypoglycaemia
- Frequent hospitalisations for poor blood sugar control
- Delay in puberty or sexual maturation or irregular periods
- Frequent trips to the toilet
- Frequent episodes of thrush/ urine infections
- Nausea and stomach cramps
- Loss of appetite/ eating more and losing weight
- Drinking an abnormal amount of fluids
- Hair loss
- Delayed healing from infections/ bruises
- Easy bruising
- Dehydration and dry skin
- Dental problems
- Blurred vision
- Severe fluctuations in weight, severe weight loss, an anorexic BMI or even rapid weight gain.
- Fractures or weak bones.
- Co-occurrence of depression, anxiety or another psychological illness
- Anxiety or distress over being weighed at appointments
- Frequent requests to switch meal plans
- Fear of hypoglycaemia
- Fear of injecting or extreme distress at injecting insulin
Why is diabulimia so prevalent?
The development of any eating disorder normally involves a multitude of factors, but one of the most common triggers cited by Type 1 diabetics in the BBC3 documentary was the focus on food quantity and calories that diabetes already entails. As Becky, a recovered diabulimic, puts it, “you don’t get a day off from diabetes. Every day is about numbers, and this is the case with many eating disorders. So if you’re diabulimic, you have double the amount of numbers flying around your head, and it becomes obsessive. Once you start skipping insulin, it’s a dangerous game.”
Gemma, a young Type 1 diabetic with a case of diabulimia so severe that has been sectioned and hospitalised, agrees that diabulimia is strongly linked to compulsion:
“Diabulimia offers the “perfect diet”, gone wrong. You can eat whatever you want and still lose weight. It’s addictive.”
Another reason why diabulimia is so common among Type 1 diabetics is the fact that, to you, I and even many medical staff, diabulimia sufferers often don’t look “unhealthy”, and a diabulimic doesn’t have to be at a critically low weight to be in fatal danger. As such, diabulimia can go unnoticed by family, friends and a sufferer’s GP. Add to this the fact that many people have never heard of the condition, diabetics often feel stigmatised for their condition already, without the added taboo of a mental health problem, and the issue that many diabulimics don’t know where to turn for support, and it’s easy to see why diabulimia has become so common.
What is the treatment for diabulimia?
This can depend on the severity of each diabulimia case, but unfortunately, as diabulimia isn’t yet acknowledged as a medical condition, treatment is patchy to say the least. Due to the expertise required to treat both the diabetic and psychiatric aspect of the disease, there are few eating disorder units that specialise in treating diabulimia, as evidenced in the documentary last week, in which Gemma is denied a bed in an inpatient unit as her case is considered too complex. This is all too frequent an occurrence, according to Gemma’s psychiatrist Professor Khalida Ismail:
“Neither the services nor the research evidence exist when it comes to supporting people with diabulimia. It’s my observation that these patients are falling through the net, and as a result they’re getting worse diabetes control, increasing risk of diabetic complications and of early fatality.”
Effective treatment requires a delicate combination of eating disorder specialist and mental health plans, normally alongside GP support. At the moment there is only one specialist outpatient clinic specifically treating diabulimia in the UK, run by King’s Health Partners in London, although training is improving, diabetes experts are very aware of the condition and NICE guidelines for health professionals now include a section explaining treatment management for people with diabetes who are also suffering from eating disorders.
Cases such as Becky’s, who at the age of 29 is on crutches due to bone damage as a result of diabulimia, but who recovered as in inpatient at the Eden Unit in Aberdeen, offer hope for overcoming the condition for other sufferers. A year and a half on from her hospitalisation, she is now not only managing her Type 1 diabetes effectively, but also regularly training in the gym to strengthen her feet, with the eventual aim of being able to dance and ride a bike. Her plan is to take positive baby steps, and it’s working. Meanwhile, meet-ups and charities such as Diabetics With Eating Disorders provide advice, social support and recovery stories from former sufferers who’ve been there, done that and come out of the other side to lead fulfilling lives. Further investment by the government into mental health services in the UK stands to help, but until that filters down to GP practices and hospitals, awareness and openness around the subject of diabulimia could make all of the difference to saving lives.