Diabulimia booklet

Diabetes &

Eating Disorders {ED-DMT1 - Diabulimia} by

Alice & Lucy

{both in recovery for ED-DMT1}

ALICE

I’m Alice, I’m 22 and am in the process of recovering from ED-DMT1 (Diabulimia).

I have been intermittently omitting my insulin since the age of 18; during the worst period I was admitted to hospital in DKA 18 times within 11 months.

I am currently a university student but have lost a huge amount due to diabulimia; I have been forced to have time out from university, change university course and even lost friends as a result but luckily appear to have no medical complications. I wanted to get involved with the project to raise awareness of this devastating condition and encourage communication amongst health professionals.

I really hope this booklet, which we’ve put together using our own experiences, will help this to happen.

I’m Lucy, 24, and have been in recovery from ED-DMT1 for almost 7 years. My insulin omission began when I was 16 and my recovery started 2 months before my 18th birthday. The illness took away everything I had; my friends, boyfriend, education and put a huge strain on my relationship with my family. My greatest struggle during my illness was that no-one (including medical professionals as well as my friends and family) really understood what was happening to me, despite my honesty about what I was doing. I was isolated with no-one to turn to in a time where I desperately needed support.

The beginning of my recovery was when I was admitted to hospital for 10 days prior to an operation to remove my cataracts (which were a result of my insulin omission). By the time I left I could see and felt so much stronger than I had prior to my admission.

Since my recovery I have completed a degree in Mathematics and secured a place to study for my PGCE this September. I now volunteer for the charity DWED (Diabetics With Eating Disorders). Through DWED I have made some life-long friends. Together we have bonded by a mutual understanding of the struggles of ED-DMT1 and strength in fighting the illness. I wanted to create this booklet to help medical professionals when faced with a patient with ED-DMT1. It’s a complex illness that needs understanding and by sharing my experiences, I hope I will help others.

LUCY

ED- DMT1 Diabullimia

An overview

ED-DMT1 (Eating Disorder – Diabetes Mellitus Type 1).

When a person with Type 1 Diabetes does not take enough insulin the level of (glucose) sugar in the blood increases.

Lack of insulin leads to glucose being unable to convert to glycogen for energy. This glucose is then lost in the urine and the calories it contains are not used.

As this goes untreated the body responds to the lack of energy by burning the body’s fat stores, muscle and if left, tissue from major organs. This process creates by-products known as ketones which are acidic and dangerous to the body. When there is a certain level of ketones in the system the body develops Diabetic Ketoacidosis (DKA). DKA is always fatal if left untreated.

‘Diabulimia’ is the common term for when someone with Type 1 diabetes uses this process for weight control. While for some the use of insulin omission may be intermittent, there are more who are trapped in this behaviour long term. The Joslin Diabetes Centre estimates that 40% of Type 1 females aged 15—30 regularly omit insulin for weight control.

ED-DMT1 is a serious, pervasive and complex psychiatric condition and should be treated as such, with understanding & compassion but also with urgency as per NICE guidelines. Complications include blindness, limb loss, neuropathy blindness and fatality.

Symptoms of Diabulimia Dehydration Dry Skin

Recurrent episodes of DKA/ Hyperglycaemia

Loss of appetite/ Eating More and Losing Weight

Nausea and Stomach Cramps

Drinking an abnormal amount of fluids

Over or under - treating Hypoglycaemic episodes

Frequent episodes of thrush/ urine infections

Hair loss Delayed Healing from infections/ bruises

High HbA1c

Frequent hospitalisations for poor blood sugar control

Frequent trips to the Toilet A fundamental belief that insulin makes you fat

Severe fluctuations in weight - loss or gain.

Avoidance of Diabetes Related Health Appointments

Anxiety or distress over being weighed at appointments

Co – occurrence of depression, anxiety or other psychological disturbance i.e.

Borderline Personality Disorder.

Blurred vision

Fear of injecting or extreme distress at injecting

Insisting on having injected out of view

Fear of hypoglycaemia

Lack of BS testing or a reluctance to test

Injecting in private

Early onset of Diabetic Complications; neuropathy, retinopathy, gastroperisis & nephropathy

If you’re a...

GP Between us, we’ve put together these simple steps which we think would have made a significant improvement and a positive impact on the treatment that we received:

Whether your patient confides in you or whether you spot the symptoms yourself, it is important to check that the patient wants/is ready for ED help. The next step is to inform a Diabetes Specialist but try to maintain regular check ups with the patient and to stay in the loop with their treatment. Try to offer additional, alternative support if they feel it is necessary.

REGULARITY - ROUTINE - RELIABILITY A patients GP is the first, most regular and most easily accessible point of contact. I feel that having a GP who is up to date and informed will help monitor progress and be more reassuring to the patient during a very difficult and confusing time. I found that my own GP was very easy for me to talk to. However, the lack of communication between my GP, the diabetes specialists and the eating disorder specialists, meant that my care was disjointed. Instead of progress, I felt I was being shoved from pillar to post, despite my GPs best interests.

If you’re a...

Try to work out what level of support will best support the patient.

Listen to them and speak with their GP for further, background information on your patient. Is there an Eating Disorders specialist involved at this time? Gather as much information as you can to see the patients current situation clearly. Try to make regular (more often than ‘normal’) appointments for support and monitoring.

SMALL STEPS CAN TAKE YOU FAR Throughout my illness, I found my visit to my diabetes team incredibly stressful. I was open about my situation but found that there was a large level of understanding missing. It is widely felt that diabetes specialists do not ‘understand’ eating disorders (particularly ED-DMT1) and that the idea of not taking insulin is absurd to them.

This is clearly not conducive for a patients recovery. I was too often given large challenges to face following my appointments, whereas focusing on smaller, manageable goals would have made each task far less daunting. Being berated over high HbA1c results only applies negative pressure and take focus away from long term wellness so try to take this into account when dealing with a patient.

Diabetes Specialist Between us, we’ve put together these simple steps which we think would have made a significant improvement and a positive impact on the treatment that we received:

If you’re an...

ED Specialist Between us, we’ve put together these simple steps which we think would have made a significant improvement and a positive impact on the treatment that we received:

Speak to your patient’s GP and Diabetes Specialists in depth prior to your first meeting and try to gain a greater understanding of ED-DMT1 (Diabulimia).

Upon meeting the patient, listen to them and then DISCUSS the situation. Remember: Insulin and food may both be seen as extreme challenges for the patient, as I found. Always remain updated with both their GP and their Diabetes specialist; this is a great way to monitor their progess.

DON’T JUDGE A BOOK BY IT’S TITLE! I felt that my ED specialists had no idea or understanding of my illness.

This meant I was being labelled as having some other eating disorder (I was told I was anorexic by one specialist and bulimic by another); they would not listen or try to understand my situation and the support was poor.

Too much of my time spent with eating disorder specialists was fighting these labels I was being given, which was a drain on the minimal energy I had.

For me, the insulin omission needed to be resolved first before attempting to tackle any other underlying ED.

If you’re a...

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Summary...

GP

*Symptoms of Diabulimia and Overview information taken from Diabetics with Eating Disorders (DWED).

Alice and Lucy have created this booklet as Fixers. Fixers are young people using their past to fix the future. The information contained in this leaflet is based on the experiences of these young people and shouldn’t replace formal medical advice.