T1DE is a deadly physical and mental health disorder involving mismanagement of insulin for weight control. We are currently in the process of updating this page to explain the condition, the need for nationwide recognition, and explore treatment options for people with Diabetes Type1 and eating distress.
A true story about T1DE - alert, distressing content
Insulin Restriction: What it is.
Type 1 diabetes (T1D), or insulin-dependent diabetes, accounts for 10% of all diabetes cases, with most cases being diagnosed in childhood. Compared to individuals without diabetes, those with diabetes are at heightened risk developing eating disorders with approximately 30% of women and 20% of men with T1D diabetes reporting that they have an eating problem. This high prevalence is of grave concern given that Eds have the highest mortality rate of any mental illness. Insulin restriction is one particular disordered eating behaviour that is unique to individuals with T1D. Insulin Restriction: What it Does Blood glucose, or blood sugar, comes from the food we eat and is carried to all the cells in the body to supply energy. Insulin is the hormone that is responsible for transporting sugar in the bloodstream to our cells. People with T1D who lack insulin and as a result they are at risk of complications such as hypo or hyper-glycaemia, conditions in which the glucose level in bloodstream is either dangerously low or dangerously high. Chronic poor glycaemic control is associated with poor health outcomes including cardiovascular disease and micro-vascular (e.g., eye, kidney, and nerve damage) complications. To stay healthy, T1Ds will need regular controlled administration of insulin and extreme attention to their diet, usually with the help of a dietician which is a nuisance for young people who may come to resent their illness and its restrictions. As control over blood sugar improves, weight gain is a common side effect. Weight concerns then develop. Insulin restriction is the practice of purposefully under-dosing, or complete omission of, the required insulin to purge calories via a process called glucosuria where glucose is excreted through the urine. In the absence of insulin, glucose from normal foods has no access to body cells nor to fat cells causing the body to call upon energy from ketosis (leaking of fats from fat cells) or energy from muscle tissue. We call this process “insulin mismanagement”, insulin omission or diabulimia. The term “diabulimia” is inaccurate because bulimia usually implies binge eating behaviour and this can be a form of purging without binge eating. There are persons with anorexia nervosa and T1D who do not binge eat but who restrict insulin to maintain a very low body weight.
The Prevalence & Course of EDs in T1 Diabetics
Eating disturbances which may or may not qualify as an eating disorder – together with unhelpful ideas about weight and shape, are an increasing problem for more than a quarter of people with Type 1 Diabetes (T1D). Research shows that adolescents with T1D experience more serious eating disorders with higher rates of binge eating and excessive exercise, compared to their peers. It is common sense to assume that disordered eating results in poorer glycaemic (blood sugar) control in people with T1D. Type 2 diabetes is common among the overweight. It means lack of sensitivity of body cells to insulin; which is needed to drive glucose into body cells so that we can function. Type 2 Diabetes may or may not improve with changes in diet and weight. Type 1 Diabetes means that the pancreas fails to produce insulin at all. Eating disorders often develop prior to diabetes diagnosis among Type 2 diabetics but show up AFTER diagnosis in people with Diabetes Type 1. Researchers Colton et al. (2015) conducted a study to examine the prevalence of disordered eating in a sample of females with T1D across a period of about 7 years. Mean age was 11.8 +/- 1.5 years at time 1 and 23.7 +/- 2.1 years at time 7. At time 7, one third of the diabetics met the criteria for a current eating disorder and an additional additional 8.5% had a sub-threshold eating disorder. Mean age at the onset of eating problems was 22.6 years. There was no special risk of anorexia but a higher than predicted risk for bulimia nervosa and forms of compulsive overeating compared to people without T1D.
How common is insulin abuse & eating disorder in T1Ds
At the time of writing this account, there are about 22 studies across the psychological literature investigating insulin restriction/omission for weight control, weight loss, and or weight concerns; 8 studies measured frequency of restriction/omission in the context of disordered eating; and 1 study focused specifically on insulin restriction/omission after overeating. The findings from these studies are not consistent. Prevalence of insulin restriction/omission overall ranged from approx 4% to 58% in T1D people. Among T1Ds with an eating disorder, insulin restriction /omission occurs in almost half to 90% of sufferers. There are gender differences. Even among diabetics without an eating disorder, insulin restriction occurs in between 5.6 – 58% of females but only 1.4% – 9% of males. We are not sure about how to explain this finding but we suspect that it might have something to do with the importance of weight control. Some studies suggest that T1Ds are up to 4 times more likely than non-diabetics to have eating distress. However, other studies report no difference at all between diabetics and non-diabetics. One study even reported less disordered eating prevalence than non diabetics! Most studies (but not all) looking at gender differences have found that T1D women are more likely to have an eating disorder than T1D males. We cannot therefore say with certainty that T1D will predict an eating disorder. But we can say that insulin abuse is more common than we would like; and that if an eating disorder is present, it usually involves the abuse of insulin to help manage weight gain and overeating.
Do all T1Ds with an eating disorder restrict or manipulate insulin?
The answer seems to be “not all” – but diabetics with an eating disorder are much more likely to restrict or omit insulin compared with diabetics with milder forms of eating distress Studies differ in rates of insulin restriction/omission in diabetics with disordered eating behaviours. Among diabetics with eating distress, between 2.7% to 42% of females, and between 1.9% to 11.7% males, restrict or omit insulin at times specifically to lose weight.
Among eating disordered diabetics who admit to insulin restriction/omission for weight loss purposes, 26% solely withheld insulin while 74% reported insulin restriction AND other disordered eating behaviours such as overexercise, laxative abuse, purging and extreme dieting behaviour. These findings were supported by Takii et al. (1999) who found that 75% of participants with co-morbid T1D/ED used insulin omission alone, 19% used insulin omission with self-induced vomiting, and 6% used insulin omission with excessive exercise. T1Ds with an eating disorder commonly abuse insulin after periods of overeating.
Emotional drivers of insulin abuse
Among people with T1D who admit to an eating disorder, many admit some degree of disinhibited (chaotic) eating when they think their blood glucose is low; although this is accompanied by negative emotions such as guilt or shame. People who binge eat frequently are much more likely to restrict insulin if they have high levels of negative emotions in their everyday life. In 2015, a researcher named Merwin and his colleagues found that poor mood control predicted insulin restriction. Insulin restriction was also more likely if a diabetic person experienced increased anxiety/nervousness and guilt/disgust with self before eating, or when individuals reported that they broke a dietary rule (such as I shouldn’t eat sweets”)
Why are T1Ds at risk of eating disorders?
There are several explanations for this: The Frustration – Addiction Cascade. Janet Treasure, writing in 2015 suggests that insulin abuse is a form of addiction. It begins with low self-esteem and perfectionism in someone who may find their diabetes management frustrating. Diabetes means a great deal of focus on diet, foods you can and cannot eat, and weight control. Many diabetics just want to be normal like their peers. If such a person also lives in an environment where there is a lot of fat talk, or pressures to look good, they will become over-concerned with their weight. This in turn, triggers dieting behaviours, and many people discover that insulin restriction helps them to lose weight , which can lead to wide fluctuations in blood glucose. Glucose fluctuations cause changes in the opioid centres in the brain which can create addictive patterns of desire for high sugar/fat foods. These are exactly the foods which they are trying to avoid. The additional stress then cascades into a vicious circle of disordered eating where insulin restriction makes cravings and anxiety even worse. The Transdiagnosic Model This draws from both Fairburn et al.’s (2003) trans-diagnostic model of disordered eating and maintenance plus a model by clincians Goebel-Fabbri et al. (2002) that adds important issues such as perfectionism, mood regulation, and diabetes-related complications.
An eating disorder can strike anyone with low self worth, perfectionist attitudes, poor tolerance of negative feelings and events which make them insecure about how they look and what they weigh. Diabetes Type 1 is a lifelong illness at present, with no known cure. It requires very delicate management with intense and often unwelcome focus on what a person must and must not eat alongside how to cope with activity. Since the administration of insulin to keep a person alive sometimes creates poor weight control, they might view the diabetes as preventing them from being able to keep their weight as low as they might like. So we add to the mix of risk factors for an eating disorder these considerations plus the sufferer’s beliefs about the diabetes, which is regarded as a tyrannical condition. Beliefs about diabetes can compound low self worth or a sense of being out of control. If a person blames themself for some misdemeanour in the past, or views themself as different from others, or cursed, they are more likely to resent the diabetes and deal with it by ignoring the need to manage it finely or manage it at all. By choosing to withhold insulin they might be saying “I am not going to let my diabetes control me“.
Coping with the problems and uncertainties of diabetes may lead to strict behaviours (e.g. dieting) which may then develop into disordered eating behaviours such as bingeing, purging, and/or restricting which are common outcomes of dieting even in people who do not have diabetes. Diets are associated with binge-eating, most commonly of fat-sugar laden or forbidden foods, and dieters often adopt unhealthy practices to try and avoid weight gain. Chaotic eating leads to blood sugar fluctuations but people who produce insulin normally manage the effects of blood sugar swings better than diabetics. We say that diabetics have poor or absent glycaemic control which can lead to coma, confusion and even death. There are many ways in which T1Ds abuse insulin as part of eating disorder behaviour.
1 Insulin restriction and omission: T1Ds learn by experience or by talking to others, that insulin restriction helps them lose weight. Without insulin to help the normal process of metabolism, blood sugar rises to abnormal levels and spills over into the urine, putting stress on the kidneys and causing other physical effects. Without insulin, fat cells leak fatty acids known as ketones which provoke weight loss but which have other sinister effects such making the blood acidic, which can be fatal. Over time the effect of abnormal blood sugars affect the chemistry of hunger, lead to more dis-inhibited (chaotic) eating and make it even harder to manage emotions because anxiety and depression are a natural result of blood sugar fluctuations.
2: Taking excess insulin: Some T1ds with binge eating problems take too much insulin for their needs in anticipation of a binge, in which case blood sugar can fall too fast. Low blood sugar can also result from restricting food, or exercising too much. It leads to fainting, confusion and in some cases to coma and death. Some individuals with T1D are driven to dis-inhibited eating (e.g. eating foods they do not typically allow) when their plasma glucose is low because hypoglycaemia itself increases hunger and cravings. And remember that dieting itself causes cravings. These cravings add to pressure to eat foods perceived as ‘naughty’. Craving naughty foods will lead to catastrophic loss of control and increase their sense of being bad, useless people.
On the other hand, knowing that blood glucose is low, some diabetics use this as justification for bingeing on restricted foods and they overdose insulin accordingly to protect them from high blood sugar (hyperglycaemia) which can lead to damage to vital organs. So, to summarise, fluctuations in blood glucose, particularly when caused by disordered eating, expose a diabetic person not only to eating-disorder related complications but also to other harmful diabetes-related complications. The extreme physical and emotional complications of diabetes together with the fear of weight gain , then feeds back into excessive worries about eating, shape, and weight and the cycle continues.
Health Risks of Diabulimia
The health risks of diabetes are greatly magnified by insulin abuse (restriction or overdosing) and there is a 3 fold risk of death. Disordered eating in all people leads to a vast array of physical and hormonal disruptions, but the effects of poorly controlled blood glucose in a diabetic with an eating disorder compounds the physical risk in terms of serious long term health risks and compounds the expected disruptions to hunger and satisfaction cues that we all rely upon to control our eating.
Co-morbidity of Anorexia in T1D is associated with premature death. Insulin omission over time causes retinopathy (destruction of the retina) and nephropathy (kidney malfunction), especially in those with who also have an eating disorder. It is harder also to treat an eating disorder in a person who also has T1D. More diabetic patients leave treatment prematurely or refuse to adhere to treatment guidance than eating disordered patients without diabetes. Insulin restriction appears compulsive; we now recognise it as a form of purging behaviour and it thwarts the physical stability that is necessary for the psychological work to take effect.
The Treatment of Diabulimia
Given the poor treatment outcomes for diabulimia, we need to be very sensitive to the needs and fears of patients but there is no known form of treatment that is known to work in all cases. At some point the diabetic patient with an ED must want to change, must face up to the limitations of their condition with acceptance, and be willing to risk a period of unstable weight control with the help of a dedicated team of people who can balance their activity, food and medication needs. A search of the psychological literature gives us few clues about how to treat diabulimia effectively IF insulin abuse is a symptom of excessive concerns about weight control.
One patient declared to the writer that injecting insulin is equivalent to injecting liquid fat and that she would rather die young from her behaviour than accept treatment and gain weight. In this respect, the insulin abusing diabetic is like many people with anorexia who wish to be free of their anorexia, but remain thin. We are aware of cases where a person with diabulimia expresses deep regret for his or her actions only when the complications of poor glycaemic control, such as blindness, begin to set in. There is little point advising someone with diabulimia of the health risks. Most people know what these are. We must also not pass judgement on their behaviour. We do think that the following actions might be helpful.
- First and foremost, explore their deep and secret beliefs about their diabetes, being sympathetic about the tyrannical nature of the condition and helping them come to terms with having an illness which separates them from the lifestyle which can be enjoyed by their peers.
- Find other values which will make life worth living. We must help each person to discover their purpose and their legacy.
- They need nutritional and activity guidance to help them to maintain a stable body weight; which may not be ideal but which will not involve weight gain
- Emotional resilience training reduces the risk of using blood sugar swings as a secondary mood manager.
- Work on self- worth helps a person be willing and able to take care of themselves effectively.
This article is adapted by Deanne Jade 2019 with acknowledgement to Gurze Eating Disorders: Journal of Treatment & Prevention. References by request.