Okay, so the awesome Charlotte has invited me to write a blog post related to the title above. Some of you may have previously read my own blog: ‘Extra Long Tail’, which I decided to make private a couple of months ago. I may activate my blog and write some more posts at some point in the future, but at the moment I am enjoying the anonymity.
Charlotte and I often chat and debate (and have a giggle…) via Skype. We are of a similar age, but have had very different life experiences – including our experiences relating to anorexia nervosa (AN). Charlotte has a family and has worked hard to help her daughter recover successfully from AN. I do not have a family (unless you count felines…) and lived with a 28 history of restricting AN (age 12 – 40 years). I started to recover 6-7 years ago and am now quite well recovered from AN. However, I do still have high levels of anxiety and OCD.
In some ways I was considered ‘high functioning’ for most of the time I was anorexic, in that I completed my education, I have a PhD and have taught and undertaken research in universities. However, while I was anorexic, my life did not progress in other ways whatsoever. I was somewhat socially isolated and I eventually became very physically ill as a consequence of living with AN for so many years. At the point I was eventually referred for treatment, I could barely get out of bed each morning and my weight was critically low.
So why the title: “Anorexia Nervosa: An Anxiety Disorder with a Specific Set of Rules?” For as long as I remember, I have been perpetually anxious. My mother tells me that (unlike my older brother), I kicked like crazy in utero and was difficult to settle as a baby. I jumped at every sound, was hyper-vigilant and very sensitive to the world around me.
At age 3-4 years I started showing signs of OCD, phobias and autistic behaviours. I became frightened of eating any food that was white in colour, lest it make me vomit. I spent time ordering things in my bedroom – e.g. lining up the books on my bookshelf in order of size. When I started primary school I became distressed because the teacher taught me to read and write in a different way that my mother had taught me. (I could already read and write fluently by the time I started school – because I had begged my mother to teach me..). I couldn’t eat my school dinner because I thought it might make me vomit. All-in-all I was very rigid, obsessive and over-anxious.
My AN started at age 11. I was a geeky, but very sporty kid (yes the two can coincide…) and had no interest in glamour or looking pretty. I had always disliked ‘girly’ stuff and was quite a ‘tomboy’. This led some of my peers to bully me. I also have ginger hair and some kids love to tease redheads. My anxiety escalated to the point of despair. I was already training for athletics and started to do extra training outside of club sessions. I found that hard exercise reduced my anxiety. I then discovered calorie counting and found calorie charts fascinating. (See, I told you I was a geek..). I decided to set myself a daily goal of consuming 1500 kcal/day as a challenge. However, I didn’t want to lose weight; I didn’t think I was overweight or too fat – and I was actually underweight for my height.
Very soon I had become well and truly stuck in a pattern of over-exercising and food (calorie) restriction. I got stuck because these behaviours made me feel less anxious. I described this as feeling ‘in control’. This ‘control’ had nothing to do with wanting to control other people and I didn’t have controlling parents (sorry, Hilde Bruch..). What I was controlling was anxiety, by adhering to a set of rules I had somehow developed around how I ‘should’ live my life. Although I was treated for AN as a child/teen, I never gained enough weight to menstruate and I remained in a pattern of rigid exercise and eating behaviours for the next two decades. Yet, in so many ways, this pattern of behaving and thinking (i.e. adhering to a set of self-created ‘rules’) had been with me since early childhood. My AN was merely an extension of childhood obsessive-compulsive behaviours and thinking that were driven by anxiety.
One point I attempted to make on my blog is that different people experience and articulate AN in very different ways. Some people with AN experience extreme body dissatisfaction and body dysmorphia; others become obsessed with the idea of eating and exercising ‘healthily’; some gain satisfaction and a sense of reward from losing weight. I never had body dysmorphia or gross body dissatisfaction. My AN was never driven by a desire to change my physical appearance or a wish to be very thin. It was merely an anxiety disorder with a specific set of rules.
Because I never ‘felt fat’ or was ‘fat phobic’ while anorexic, many doctors failed to observe that I had AN. If they asked me whether I was ‘feeling fat’ I said ‘No’. I answered ‘No’ to most of the questions on EDE-Q (http://www.psych.ox.ac.uk/research/researchunits/credo/assessment-measures-pdf-files/EDE-Q6.pdf) – simply because these questions included the phrase ‘weight and shape’. As a consequence I remained very underweight with compulsive behaviours around eating and exercise for well over two decades. My physical and mental health deteriorated badly during this time. Thankfully, I have had very good treatment over the past 6 years and have gained and maintained a substantial amount of weight.
I urge professionals treating those with AN to ‘think outside of the box’ and to recognise that people with AN do not fit into a homogeneous group. Not all patients have ‘weight and shape concerns’. AN is not a ‘disorder of body image’ – at least for every sufferer. I would like professionals to recognise that anxiety, and behaviours that develop to control such anxiety, are key to some people’s AN (or other eating disorders). The fixation with ‘weight and shape concerns’ can lead some anorexic patients to be denied treatment, or given a treatment regime that is inappropriate for their needs. Effective recovery from AN requires adequate weight gain through good nutrition – and such treatment applies to every anorexic patient. But apart from good nutrition, the psychological needs of each patient may be quite variable.