Today kicks off this year’s Eating Disorder’s Awareness Week, it seemed appropriate to have a guest post from someone living with an eating disorder so I welcome Claire to the blog. She is talking about her experiences of receiving treatment for anorexia when she also has type 1 diabetes, which complicates the treatment significantly. I was deeply moved reading this post and I’m sure you will be aswell.
I’ve been told numerous times that my condition is “too complex”. Rather than admitting that they simply do not understand and need further education, doctors have labelled me as complicated, even untreatable. This is not true. I simply have an illness of two parts, split between physical and psychological, type one diabetes alongside anorexia nervosa. But to treat me as half and half is a failing, as both elements need to be acknowledged together, as they merge and amalgamate themselves as one.
Research shows that not only are women and girls who have type one diabetes at twice the risk of developing anorexia or bulimia, but that as many as 40% of 15 – 30 year olds of both sexes regularly omit insulin to control their weight. Although the term ED-DMT1 covers all presentations of someone with type 1 diabetes and any kind of intertwined eating disorder, the process of insulin omission is a common behaviour, often denoted by the media-coined label ‘diabulimia’. Without insulin, blood sugar levels start to rise and beyond a certain level the body is unable to convert glucose and calories to into energy. Despite such horrendous complications and commonality, ‘diabulimia’ or Eating Disorder-Diabetes Mellitus Type 1 (ED-DMT1) is difficult to diagnose and there are no current guidelines for the NHS on how to deal with the issue.
I have had great difficulty in accessing the services I need, and over the years have continuously bounced back and forth between eating disorder facilities and my diabetic clinic. The latter can prescribe insulin and advise on dietary requirements but may fall short on addressing the emotional struggles that someone with anorexia, bulimia or diabulimia may have in association to food. Eating disorder services are primarily focused on weight and food plans. They might tell you what you need to eat and help you to address maladaptive behaviours, but can fail to grasp the issues a diabetic may have surrounding insulin intake and misuse. I spent 8 months in a day-patient programme and was supervised while taking my insulin at meal times yet would inject into clothes or not dial up doses properly, which staff failed to notice. On these occasions I appeared to be at ease with taking my insulin and not overly upset or bothered by it, which should have been a major red flag that all was not as it seemed.
From my own experiences and discussions with others in similar situations, I know that the term ‘non-compliant’ is often used in association with type 1 diabetics that are struggling to take care of themselves. This is grossly inaccurate and an unfair accusation that heaps blame onto a patient and takes responsibility away from a uninformed clinician. If a type 1 diabetic is not taking their prescribed insulin there is always a reason. Presence of an eating disorder is of course an obvious example of this, the reason being a serious mental illness rather than a case of petulance or purposeful rebellion.
The most significant example I have of treatment that was not only misjudged but traumatising and life threatening involved an inpatient admission in Spring 2013. I was in a precarious state, at a very low weight and drained of energy physically and cognitively. It was decided that an hospital bed was required and reluctantly I agreed to a stay at a London eating disorder unit. I stayed for 4 months, and discharged myself with far less hope in the ability for any care services to help me recover than I had going in. I was safeguarded as an adult at risk during my admission, and a number of complaints were made and upheld. On the day I arrived the ward had no needles available for me to use to administer insulin injections. This was after they had ensured me they were fully trained in preparation for having a diabetic there. Doctors placed me on a tube feed regime without sufficient insulin prescribed to cover the nutritional content, which caused dangerously high blood sugar levels. Nurses routinely forgot my insulin doses and also required me to prompt them of my need for insulin on a regular basis. Such gross errors accumulated in an investigation and the result of which had the hospital promise not to admit any type one diabetics to the ward in the future, unless they could prove they were suitable equipped and informed. This is all well and good, but it makes me ask the question: where are we supposed to go?
One of the worst parts of this admission was the attitude I encountered from particular so-called medical professionals. Despite me having been diabetic since I was 9 years old, I had a doctor tell me he knew better than me because they did a module on diabetes at medical school. I was dismissed and talked over, and my views were deemed invalid just because I was mentally ill and so of course anything I said was unreliable. This not only left me feeling completely alone but also extremely frustrated and unsafe.
I don’t expect anyone to be an expert. To have more specialists that primarily deal with diabetes and eating disorders, as well as “diabulimia”, would be the ideal, but that’s a huge step forward from reality. Therefore I understand that it’s unreasonable to expect most clinicians I come across to be as clued up as I am. I do however expect to be listened to. Anyone treating me as their patient should do their research, go away and educate themselves. In turn, they need to appreciate that I will always know more than they do on the subject. I have had two excellent diabetic nurses that have reassured me in such a way. They were compassionate and patient as I told them of my experiences, which made a world of difference. They went away and read what they could on eating disorders, while letting me be their primary resource. Ultimately, I am not just a diagnosis, I am a person, and sometimes it’s just a case of wanting to be heard.
You can follow Eating Disorders Awareness Week on Twitter with the official hashtag #EDAW2017 and from the Beat website.