Guide: Diabulimia, an eating disorder in diabetes

This negative relationship is the start of how our diabetes and mental health can develop into diabulimia. 

What is Diabulimia?

Diabulimia is a severe and life-threatening eating behavior disorder for people with insulin-dependent diabetes. 

It's where patients deliberately skip insulin injections, often to lose weight. 

But, diabulimia is very complex. Patients often have a spectrum of disordered behaviors unique to themselves. National Eating Disorder Association (NEDA) volunteer Amy Gabbert-Montag writes that diabulimia has three variations:

1. Binging on food, restricting insulin, and purging (bulimia variant).
2. Significantly restricting both food and insulin (anorexia variant).
3. Restricting insulin in general, regardless of food intake.

Surprisingly, the media invented the term "diabulimia" - because there wasn't a word for it. Some clinicians refer to diabulimia as ED-DMT1 (Eating Disorder Diabetes Mellitus Type One) or T1DE (Type One and Disordered Eating). 

At present, diabulimia is not recognized by NICE and is not in the DSM-5-TR.

So, we, the people, must shine a light on diabulimia. We must get diabulimia the recognition it deserves and improve access to treatment for those struggling with diabulimia.

How common is Diabulimia?

We know that 60% of people with diabetes suffer from mental health problems due to their diabetes. 

We have compiled statistics on diabulimia below from multiple sources: 

1. This study by Coleman in 2020 reports that the average age where people start restricting insulin is 19.
2. Almost 30% of people with type one diabetes have an eating disorder, with the majority female.
3. The NHS claims that around 40% of women and 10% of men may have diabulimia.
4. This study by Diana in 2016 found that a massive 60% of those with type one diabetes intentionally restricted their insulin.
5. This study by James in 2018 suggests that almost 20% of women with type one diabetes have restricted their insulin to lose weight.
6. Lastly, this article even claims that up to 40% of females intentionally restrict insulin from time to time to lose weight.

From just this handful of sources, we can see that diabulimia is a hugely prevalent issue for people with type one diabetes worldwide.

How does Diabulimia develop?

Diabulimia does not have a single cause. Diabulimia is a mix of mental, social, and physical issues for the individual. 

 As these issues worsen, individuals are more likely to adopt disordered eating behaviors. Eventually, these behaviors progress into a full-blown eating disorder like Diabulimia.

You may be unhappy with your body image, overwhelmed by diabetes management, and struggling with your relationship with food.

Even criticism of our food choices by our friends can contribute to developing diabulimia, and you can start to develop a negative relationship with food and diabetes management.

Social Media and Body Image

Claire Murdoch, national director for mental health at NHS England, cited "body image pressure" as a critical driver of admissions for treatment and support with eating disorders. 

Here, we can see that the prevalence of social media has a profound influence on the development of eating disorders like diabulimia and body image issues. 

The damage of social media to those with diabetes is so significant in causing diabulimia that the NHS is launching specific new initiatives to tackle it. 

For years photoshopped imagery has damaged our self-image and feelings of self-worth. Constant exposure to this content can plant the early seeds of diabulimia and other eating disorders.

What's it like struggling with Diabulimia?

We interviewed several patients struggling with and recovering from diabulimia. Here are their messages and stories:

Zita:

Zita was recently diagnosed with type one diabetes and has struggled with eating disorders before. Adding the complexity of insulin to this was overwhelming. 

"The foundation of diabulimia is that you believe insulin is the enemy, insulin is the bad guy, insulin is what makes you gain weight. I went nine days without insulin."

You can see our interview with Zita below.

Leigh-Ann:

• "I was literally at death's door."
• "Something has got to change; I've got to do something."
• "I can't put my life in danger because of how I look. He needs a mum."
• "I didn't have a single unit of insulin for three months."
• "My HBA1C was always 14 or 15."

Leigh-Ann's message: Please talk about diabulimia. Talk to anyone. Engage with awareness posts, join support groups, talk to your doctor and nurses, and don't struggle alone.

There is help out there, and you can recover.

Victoria:

In her early teens, Victoria was diagnosed with T1D and struggled with body image, diabulimia, and a lack of focus. Moving to university helped, taking her mind off diabetes and diabulimia.

Victoria used to sleep most of the day but has embraced self-care. Victoria also has regular appointments with her psychiatrists, with a diabetes nurse present, to stay on top of her diabulimia.

Victoria is living proof that you can recover from diabulimia. You must talk to someone.

Naomi:

"I was admitted with diabetic ketoacidosis eight times in two months."

Naomi has had type one diabetes for fifteen years and kindly spoke about her experiences with diabulimia at length.

Naomi is struggling with diabulimia now but is optimistic about the future. You can see our interview with Naomi below and hear first-hand what it's like living with diabulimia.

 

What are the early warning signs of Diabulimia?

Diabulimia doesn't emerge overnight; it is the outcome of months, if not years, of poor mental health. NEDA point to the below warning signs:

Behavioral and emotional signs of Diabulimia:

• Neglecting diabetes self-care
• Destructive perfectionism with blood sugar levels
• Secrecy about their diabetes management
• Skipping diabetes medical appointments
• Heightened fear of hypoglycemia 
• Blaming insulin for weight gain
• Increased anxiety about body image
• Extreme fluctuations in diet and food intake
• Avoiding certain foods to lower insulin requirements
• Avoiding eating with friends and family
• Discomfort injecting insulin in front of others
• Obsessive about food, calories, and weight
• Extreme changes in an exercise regimen
• Depression, anxiety, and social withdrawal
• Missing diabetes prescriptions
• Frequent mood swings and irritability
• Diabetes burnout
• Denial

Physical Signs of Diabulimia:

• HbA1C continuously above 9.0
• Unexplained or sudden weight loss
• Regular bouts of vomiting and nausea
• Constant thirst and toileting
• Frequent episodes of diabetic ketoacidosis (DKA)
• Low salt levels
• Frequent bladder infections
• Deteriorating or blurry vision
• Dry hair and dry skin
• Increased fatigue or lethargy

Many of these emotional and physical warning signs for diabulimia are familiar to people with type one diabetes worldwide. As a patient develops more of these signs, they compound and hasten the development of diabulimia. It is important to note that hundreds of other factors contribute to developing each of these signs. 

Am I developing Diabulimia?

Diabetes UK put together the following questions you can ask yourself to try to spot these trends early, paraphrased below:

1. Do you make yourself sick because you feel uncomfortably full?
2. Do you feel ashamed or guilty about what you've eaten?
3. Do you think you have lost control over what you eat?
4. Have you noticed sudden weight loss recently?
5. Do you think you're fat, regardless of what others say?
6. Do you ever intentionally take less insulin than you should?

We put out an extensive survey in May 2022 to measure diabulimia awareness and behaviors in the diabetes online community. 

The results of the diabulimia survey are below. A massive 94% of respondents think there is not enough awareness of eating disorders like diabulimia.

27%, nearly one-third, of respondents dangerously manipulate their insulin levels due to fear of weight gain.

This shocking statistic shows the prevalence of the "insulin makes you gain weight" myth, which, as Zita claimed, is the foundation of diabulimia.

What are the short-term effects of Diabulimia?

Diabulimia severely impacts many parts of our mental and physical health, not just our diabetes management. Indeed, Professor Valabhji, a leading diabetes clinician in the UK, described the impact of diabulimia as "devastating."  

Short-term effects of diabulimia are often related to persistently high blood glucose levels. Below are some of the consequences, as described by NEDA:

1. Slower wound-healing and ulcers
2. More frequent staphylococcal and bacterial infections
3. Yeast infections
4. Muscle atrophy and breakdown
5. Menstrual disruption
6. Severe dehydration
7. Electrolyte imbalances
8. Lethal Diabetic ketoacidosis (DKA)

What are the long-term effects of Diabulimia?

Diabulimia can have serious long-term consequences for our physical and mental health. These are similar to some of the most severe complications of type one diabetes and are linked to high ketone and glucose levels in patients with diabulimia. NEDA writes some of the long-term effects below:

1. Retinopathy and blindness
2. Macular edema
3. Peripheral neuropathy, which can lead to amputations
4. Gastroparesis
5. Sudden fainting and drops in blood pressure
6. Chronic diarrhea or constipation
7. Kidney disease
8. Liver disease
9. Heart disease
10. Diabetic ketoacidosis (DKA)

These are severe conditions, and some can become fatal over time or short term. DKA is particularly lethal, sometimes in hours rather than days.

How does Diabulimia cause long-term complications?

Because the body isn't receiving enough insulin in diabulimia, it cannot utilize energy from our food. This lack of energy puts us into starvation and malnutrition, and we begin progressively deteriorating. The persistently high blood sugar levels then cause damage to nerves, organs, and blood vessels, through excessive glycosylation. 

How can we treat Diabulimia?

Diabulimia is a complex eating disorder that often requires professional medical intervention. There are several ways you can start to overcome diabulimia, and reading this article is an excellent first step.

You can seek professional medical help for Diabulimia

You can contact your doctor to access medical care. A multi-disciplinary team often delivers treatment with input from endocrinologists, dieticians, therapists, and nurses. 

You'll receive a holistic assessment, and your diabetes team will support you every step of the way. You may also receive medication and counseling to treat your diabulimia.

You can talk to others about Diabulimia; you are not alone

Talking with others in a similar situation can help with understanding your condition. More than ever, it's essential that people with type one diabetes and diabulimia come together to support one another. 

You can contact people on Instagram, chat anonymously on forums like this, and attend local diabetes groups. There are tens of thousands of people with type one diabetes across social media, many battling the same conditions. 

Zita, Victoria, Leigh-Ann, and Naomi courageously spoke about their struggles with diabulimia. Now, they are part of our diabulimia guide. 

When we work together to support each other, we are stronger and happier together.

You can always message us on Instagram @typeonestyle to talk, anytime, about anything. 

You can access online resources and communities.

Many organizations and websites can help with eating disorders like diabulimia and the whole of your mental health. A few are listed below.

• SupportLine
• BACP
• FREED program
• MIND
• Student Minds
• BEAT website
• Diabulimia helpline

Some of these resources can help you in person too. MIND offers face-to-face services across the UK and phone and e-mail helplines to help with diabulimia.

You can help yourself and be kinder to yourself.

Adhering to professional advice and making better choices can significantly impact treating your diabulimia. Use your support network, talk to friends and family, and frequently contact your doctor and nurses.

Follow online positivity and mental wellbeing tips to change your mindset and perceptions about your body image. Engage in positive reinforcements, and re-learn to love yourself for who you are - because you deserve nothing less. 

Diabulimia doesn't define you or dictate your value.

The prognosis of Diabulimia is positive.

Ultimately, diabulimia is treatable, and you can overcome disordered eating behaviors. It takes a long time, but consistency with healthcare plans, therapy, and positive self-help is a steady path to recovery.

How much you recover does depend on how long you have had diabulimia and how severe the complications have become. It also depends on broader aspects of your life that affect your mental health. Managing our daily lives is one reason it can be so tricky because it requires firm discipline amongst so much change.

How can I help someone with Diabulimia?

Helping others with diabulimia is difficult because each person suffers from such a broad range of issues that cause it. Someone might restrict their insulin for several reasons and not just due to an eating disorder like diabulimia.

A leading international expert on eating disorders like diabulimia, Dr. Ann Goebel-Fabbri, has published a book with several tips for those wishing to help their loved ones. 

1. Be aware of diabetic ketoacidosis (DKA) warning signs and symptoms warning signs and symptoms of diabetic ketoacidosis (DKA). Spotting these could save their life.
2. Learn about type one diabetes and eating disorders like diabulimia separately. Both are profoundly complex but, when combined, create another world of difficulty. 
3. Don't use tough love. People with diabetes and diabulimia already have way too much to deal with. Approach them calmly with compassion and respect. Please give them a safe space to talk about diabulimia, free of judgment and confrontation.
4. Tailor your involvement. Some people appreciate lots of support, and others want a brief acknowledgment of their diabulimia. It is vital to help them in the way they want to be helped.
5. Encourage them to eat what they like. Restricting types of food can reinforce the negative relationship they may have with food and bolster their diabulimia.
6. Just check in with them regularly. There doesn't need to be a reason or a topic. "Hey, how are you?". Make them feel valued and appreciated - it can mean the world to them.

How you can tackle Diabulimia and raise awareness worldwide

Diabulimia is a severe and complex condition that may affect up to 40% of women with type one diabetes worldwide. That's tens of millions of people going through diabulimia, but alone.  

We can start to fight the stigma around diabulimia today by raising awareness.

It's a small token, but we've released a brand new range of mental health and diabulimia awareness patches for Freestyle Libre, Dexcom, Omnipod, and Medtronic Guardian 3, continuous glucose monitors.

Wear these awareness patches with pride everywhere you go and drive diabulimia awareness at the same time.

When you post pictures of your adhesive patches on Instagram, you'll raise awareness of diabulimia and more to the diabetes online community.

You can also watch and share the documentary below to help educate others. The videos below were not produced by Type One Style and aren't linked or associated with us.

 You can watch the full BBC documentary here.

Anyway, now it's up to you. What will you do now?

 

Need to talk? Join our Facebook group https://tinyurl.com/33w5t52p

 

Sources of Information & References

Cleveland Clinic, C., 2022. Diabulimia: What It Is, Symptoms, Risk Factors & Treatment. [online] Cleveland Clinic. Available at: <https://my.clevelandclinic.org/health/diseases/22658-diabulimia> [Accessed 14 May 2022].

Coleman, S. and Caswell, N., 2020. Diabetes and eating disorders: an exploration of 'Diabulimia.' BMC Psychology, 8(1).

Davidson, J., 2014. Diabulimia: how eating disorders can affect adolescents with diabetes. Nursing Standard, 29(2), pp.44-49.

Deiana, V., Diana, E., Pinna, F., Atzeni, M., Medda, F., Manca, D., Mascia, E., Farci, F., Ghiani, M., Cau, R., Tuveri, M., Cossu, E., Elena, L., Mariotti, S. and Carpiniello, B., 2016. Clinical features in insulin-treated diabetes with comorbid diabulimia, disordered eating behaviors, and eating disorders: European Psychiatry, 33(S1), pp.S81-S81.

DiMeglio, L., Evans-Molina, C. and Oram, R., 2018. Type 1 diabetes. The Lancet, 391(10138), pp.2449-2462.

England, N., 2022. NHS England » NHS to give therapy for harmful social media as part of a plan to tackle the rare eating disorder. [online] England.NHS.UK. Available at: <https://www.england.nhs.uk/2019/02/nhs-to-give-therapy-for-harmful-social-media-as-part-of-plan-to-tackle-rare-eating-disorder/> [Accessed 14 May 2022].

Falcão, M. and Francisco, R., 2017. Diabetes, eating disorders and body image in young adults: an exploratory study about "diabulimia." Eating and Weight Disorders - Studies on Anorexia, Bulimia and Obesity, 22(4), pp.675-682.

Goebel-Fabbri, A., 2022. Dr. Goebel-Fabbri's book — Ann Goebel-Fabbri, PhD. [online] Ann Goebel-Fabbri, PhD. Available at: <http://www.anngoebel-fabbri.com/dr-goebelfabbris-book> [Accessed 14 May 2022].

Imperial.NHS.uk. 2022. Professor Jonathan Valabhji OBE. [online] Available at: <https://www.imperial.nhs.uk/consultant-directory/jonathan-valabhji> [Accessed 14 May 2022].

James, S., 2022. What is diabulimia, and what are the implications for practice?. [online] British Journal of Nursing. Available at: <https://doi.org/10.12968/bjon.2018.27.17.980> [Accessed 14 May 2022].

NEDA, N., 2022. [online] Available at: <https://www.nationaleatingdisorders.org/diabulimia-5> [Accessed 14 May 2022].

Padín, P., González-Rodríguez, R., Verde-Diego, C. and Vázquez-Pérez, R., 2021. Social media and eating disorder psychopathology: A systematic review. Cyberpsychology: Journal of Psychosocial Research on Cyberspace, 15(3).

Polonsky, W., Anderson, B., Lohrer, P., Aponte, J., Jacobson, A. and Cole, C., 1994. Insulin Omission in Women With IDDM. Diabetes Care, 17(10), pp.1178-1185.

Recovery Village, R., 2022. Diabulimia: Warning Signs, Effects & Treatment | The Recovery Village. [online] The Recovery Village Drug and Alcohol Rehab. Available at: <https://www.therecoveryvillage.com/mental-health/diabulimia/> [Accessed 14 May 2022].

Torjesen, I., 2019. Diabulimia: the world's most dangerous eating disorder. BMJ, p.l982.

UK, D., diabetes, E. and diagnosed?, N., 2022. Eating disorders and diabetes. [online] Diabetes UK. Available at: <https://www.diabetes.org.uk/guide-to-diabetes/emotions/eating-disorders-and-diabetes> [Accessed 14 May 2022].

UK, D., and ketoacidosis)?, W., 2022. What is DKA (diabetic ketoacidosis)?. [online] Diabetes UK. Available at: <https://www.diabetes.org.uk/guide-to-diabetes/complications/diabetic_ketoacidosis?gclid=Cj0KCQjwpv2TBhDoARIsALBnVnnQaidUfEEm_GeTkgkYWiCQ-5OIZqKySSzgiXZRrwO3IBfqnyL6a0MaAhNkEALw_wcB#DKA%20signs%20and%20symptoms> [Accessed 14 May 2022].