Drifting between services

Posted 21/05/2018

Recognition for my eating disorder was a long time coming, and the dragging of heels by health professionals didn’t help me to recognise there was any kind of problem. Denial is a common theme that most people experience during the early development of an eating disorder, but when the so-called experts that you come into contact with routinely furrow their brows and display perplexity, it’s easy to feel dismissed. Being pushed back and forth because nobody knows what to do with you is quite disheartening.

The main reason accessing treatment for my eating disorder was so problematic is because my condition is a comorbid mental and physical health issue. I can be classed as suffering from anorexia binge/purge subtype and previously may have been labelled with bulimia. This started around the age of 12 or 13 with faddy diets that became more restrictive and led to episodes of bingeing. However, I have the added complication of being a type 1 diabetic, which I was diagnosed with age nine.

I cannot separate my disordered eating from my type 1 diabetes. One cannot be separated from the other, which is something that experts from one of the two fields have struggled to comprehend. There have been periods where I have omitted my prescribed insulin to aid weight loss, a practise that has over the years been referred to within the media as ‘diabulimia’. I recall a time that I restricted my insulin and spent days in a state of diabetic ketosis and verging on the edge of diabetic ketoacidosis, an extremely dangerous state that is lethal if left untreated for a prolonged period, even just hours. But nobody had an inkling that such a thing might be linked to my fear of gaining weight and obsession with the scales. I hid my glucose reading as much as I could and ran rings around anyone involved in care of my diabetes.

It was the same during the first few years I started to be seen at an adolescent eating disorder service. This came after my mum desperately forced me to be seen by my GP and be given a referral. Subsequent appointments cantered on my intake, being weighed, my mood, using food diaries and being shown laminated growth charts and recommended portion sizes. They told me about nutrition and the effect of food on blood sugar levels, all the while pretending that my type 1 diabetes did not exist. They’d skim over the topic with maybe one question of how my control was going, and assume that my diabetes clinic would be handling it. All this did was make me feel that my insulin manipulation was a tool I could keep safe.

At the diabetic clinic they acknowledged I was being seen elsewhere for an eating disorder, but they made their own ideas up as to what this entailed. Before my issues came to light I have on many occasions been scolded for high sugar readings and treated like a petulant child that was just being deviant for the sake of it. Or they would wrongly conclude that my erratic charts were linked to the eating disorder for the simple reason that I was not eating enough. Like the eating disorder service, instead of listening to me they just made their own assumptions. They’d tell me I needed to take x dose here and y dose there to improve, without any comprehension over the emotional impact changing my doses would have and of how my fear of extra insulin was a very real  and distressing thing.

When I was 16 I was admitted to an inpatient ward for young people in London, which became a shambles as they tried to deal with the added complication of my type 1 diabetes. I was treated as someone with anorexia and given the same diet and meal allowances, and my diabetes was pushed aside like something they were scared to touch. There was a diabetic nurse that visited from the nearby general hospital once a week and looked over my blood sugar levels. I was watched taking insulin, hidden in the clinic room where I’d be called twenty minutes before meals, most of the time anyway, the times they remembered. They accused me of exercising when I dropped low and treated me as if I’d been using some kind of diabetes witch’s voodoo when I went high. They couldn’t accept the fundamental rule of type 1 diabetes being that there sometimes simply are no rules. This just created distrust and unease, I didn’t feel safe, and ultimately, despite pretence of being adept, they didn’t feel confident having me there.

For a long while it felt like there was nowhere to go that could treat me. I drifted. I became worse. I felt more alone and hopeless.

It took me about five years to get my eating disorder consultant into the same room as my diabetic nurse. Five years for anyone to grasp the fact that these two problems were so interlinked for me and that one could not be tackled without the other. It was a whole disorder and not one that was broken into two halves.

This shift of attitudes has mostly come about by increased media coverage and charity campaigning on the subject. This has been largely by Diabetics With Eating Disorders (DWED), an organisation that I work for and the only UK charity that tackles what is now termed within academic and clinical circles as ED-DMT1 (Eating Disorder-Diabetes Metillus Type-1) or T1ED in shortened form, as well as the highly dangerous practise of ‘Diabulimia’ (insulin omission). Last year DWED was involved in the production of a BBC documentary titled ‘Diabulimia: the World’s Most Dangerous Eating Disorder’. After its release, the documentary achieved very positive feedback and was in high demand, leading to it eventually being aired on the main BBC television channel.

This is all really positive news and hopefully change will continue to happen. An increased number of eating disorder units are requesting T1ED training and psychiatry is now being seen as a crucial element in the care of type 1 diabetes. There has even been talk of specialist units for those with diabetes and an eating disorder. It all comes a little late for me, which makes it somewhat bittersweet, but I finally feel validated. I am not the only one. I am not a lost cause or “too complex”. If you are currently suffering from an eating disorder intermeshed with type 1 diabetes, please know that help is out there. 

Contributed by Claire

Claire tweets for Diabetics with Eating Disorders, a charity dedicated to supporting people who have both an eating disorder and Type 1 diabetes. You can follow them at @diabeticswithed.