What Exactly Is Diabulimia?
Diabulimia is a serious eating disorder that is often overlooked. It is defined as the deliberate misuse of insulin among individuals with type 1 diabetes in order to lose weight and control their blood sugar levels. Unfortunately, this behavior can lead to serious health risks and even death. It’s important to be aware of this disorder and know the signs to look for so that you can help your loved one get the help they need.
What Is Diabulimia?
Diabulimia is an eating disorder in which a person with type 1 diabetes limits their insulin doses in an effort to lose weight. Diabulimia is also referred to by the term ED-DMT1, which stands for Eating Disorder-Diabetes Mellitus Type 1. Though people with type 1 diabetes may experience other types of eating disorders, diabulimia specifically refers to insulin restriction. However, diabulimia is not well-known and often misunderstood. In fact, it doesn’t have a unique diagnostic code. As a result, insulin restriction is often classified in the DSM-5 as purging behavior. Depending on the specific experience, it may also be classified as bulimia nervosa, anorexia nervosa, or OSFED.
Background on Diabetes
To understand the nuances and dangers of diabulimia, you need to first understand the role that insulin plays in our organ systems and how it impacts people with type 1 diabetes.
Also called juvenile diabetes or insulin-dependent diabetes, type 1 diabetes is a chronic autoimmune disease that reduces or stops the body’s insulin production. Insulin is a hormone responsible for allowing cells to absorb glucose from the bloodstream. Without insulin, the body starts breaking down tissue to use for energy, and the sugars from food stay in the bloodstream and cause high blood sugar levels.
To manage blood sugar levels, people with type 1 diabetes are prescribed insulin by healthcare professionals like an endocrinologist. An insulin injection or pump allows their bodies to balance blood sugar and absorb nutrients from the bloodstream. A person with diabulimia may restrict or limit their prescribed insulin doses with the intention of losing weight.
Potential Causes of Diabulimia
Diabulimia, as with other eating disorders, is a complex condition that can stem from both physical and mental health experiences. There’s not a single cause or reason that someone may experience diabulimia.
Monitoring Blood Sugar
A type 1 diabetes diagnosis comes with the responsibility to closely monitor food in order to track blood sugar levels. In response to their blood glucose levels, they must adjust their eating, exercise, and insulin doses to maintain their blood sugar. Some treatments necessitate patients to track the number of carbohydrates they are eating each day and adjust their insulin accordingly. This can be intense, exhausting, and create undue shame around food and health and increases the risk of developing an eating disorder.
Fluctuations in Body Weight
Before someone with type 1 diabetes is diagnosed, they might experience weight loss as their cells break down other body tissues for energy. Once they start managing their diagnosis with insulin doses, they may regain that weight as their body rehydrates and is able to absorb blood sugar. In some cases, this can create an association between taking insulin and weight gain. However, insulin does not cause weight gain; it allows the body to take in nutrients from food.
People with diabetes already face stigmas around their physical health. Experiencing further fluctuations in body weight due to their diagnosis may give them a distorted body image.
Social and Cultural Pressure
The media and pop culture have created unrealistic beauty standards that can affect people’s self-image. The pressure from external sources may play a role in someone developing disordered eating behaviors, including diabulimia.
Control Over Health
A diabetes diagnosis can be overwhelming. It can leave people feeling out of control of their bodies. This may create a need to control other aspects of their life, such as their food or weight. In order to feel more in control, they might be at risk of developing diabulimia.
Signs of Diabulimia
The signs and symptoms of diabulimia can be physical, emotional, and behavioral.
From a behavioral standpoint, someone with diabulimia may neglect or be secretive about their diabetes treatment. They may have a shift in eating habits and exercise. Both of these may be exacerbated by social anxiety, and they may avoid testing their blood sugar levels, injecting insulin, or eating in front of others.
Emotionally, someone with diabulimia may experience other mental health conditions like depression and anxiety. They may withdraw from friends and feel anxious or fearful talking about food or treatment-related topics.
Physical warning signs of diabulimia include unexplained weight loss, consistent high blood sugar levels, dehydration, frequent urination, more frequent and unexplained diabetic ketoacidosis (DKA) episodes, deteriorating vision, fatigue, and weakness. In many cases, diabulimia can lead to serious and irreversible health issues.
Potential Risks of Diabulimia
If left untreated, diabulimia can be life-threatening. Restricting the body’s access to nutrients and functioning with high blood sugar levels for prolonged periods of time can have serious side effects for someone with diabulimia.
Without enough insulin, the body can go into diabetic ketoacidosis (DKA)–-a very serious and life-threatening complication of diabetes. When the body can’t take in blood sugars, it starts breaking down fat for energy. Fat breaks down into compounds called ketones. If too many ketones accumulate, it lowers the pH of the blood, essentially poisoning the body. When someone limits their dose of insulin, they increase their chances of DKA which can potentially lead to a coma or death.
It’s not good for the body to endure high blood sugar levels for an extended time period. The blood should flow cleanly throughout the body, but consistently high amounts of glucose literally start to clog up capillaries. The eye is full of tiny blood vessels that are particularly vulnerable to the sandpaper effect of high blood sugar. The sugars can rupture the retina’s blood vessels and can cause fluid to build up in the eye. Called retinopathy, this can lead to a range of sight-related issues, including blindness. People who restricted their insulin doses developed retinopathy an average of eight years earlier than those who didn’t
High blood sugar levels can also affect the nervous system. Lower blood oxygen levels, thicker blood that damages capillaries, and inflammation can all cause nerve damage. This can ultimately affect strength and feeling throughout the body. Nerve damage caused by prolonged exposure to high blood sugar can cause pain in the hands and feet, slowed digestion, and abrupt changes in heart rate and blood pressure.
Other Organ Damage
Diabetes complications eventually take a toll on the entire body and create a long list of risk factors. The kidneys have to work on overdrive to filter out the glucose, and eventually wear out. Along with kidney disease, fat accumulations and high cholesterol can cause liver disease and heart disease, respectively. With an increased risk of organ failure, many of these consequences can become potentially fatal.
Who May Be Affected by Diabulimia?
Diabulimia can affect a range of people with type 1 diabetes, and the eating disorder may show up at any point after their diagnosis. Compared to people without diabetes, adolescents with type 1 diabetes are three times more likely to develop an eating disorder. There’s a high prevalence of diabulimia in adolescents and young adults, though it can also show up in children and adults. Diabulimia does not affect people with type 2 diabetes because type 2 diabetes is rarely treated with insulin.
Find Support and Treatment for Diabulimia
Diabulimia is a potentially life-threatening eating disorder that affects people with diabetes. If you feel that you or a loved one may be experiencing diabulimia, know that there is a loving and compassionate community to support you. At The Alliance, we have resources to help you find therapists and treatment options. If you’d like to talk to someone now, feel free to call our helpline to speak with a licensed therapist.