Healthcare Improvement Scotland have published a new clinical guideline on Eating Disorders. Ellen Maloney, a patient representative on the guideline development group, explains her experience of living with anorexia nervosa and outlines the changes she hopes the new guideline will bring.

I was twelve years old when I first developed anorexia nervosa.  I had just started high school and on the surface, everything in my life was going well.  I had a group of close friends, I did well academically and had plans to study medicine at university, and I played the harp, performing and competing around the country.  Yet I felt constantly overwhelmed and paralysed by anxiety that I had no words for.  One day, I simply stopped eating and for the first time, the unbearable anxiety dissipated, and I felt calm.

Managing unbearable feelings

The thing about eating disorders is that they are not about food or eating or weight. Eating disorders are essentially, about managing unbearable feelings. It took years of prolonged hospital admissions before I was able to access therapy that helped me to understand this and find other ways to manage how I felt.

I now volunteer for Beat, the UK’s leading eating disorder charity. My story is not unique: I hear time and time again that access to appropriate treatment is delayed or obstructed because eating disorders are so misunderstood, and professionals focus too much on the symptoms, how much someone is eating or what they weigh. This barrier is highly problematic because we know that a predictor of recovery is early intervention. My hope is that the recommendation in the new guideline produced by SIGN – part of Healthcare Improvement Scotland – for early intervention is implemented as it is not only effective, but it saves lives.

Eating disorders are mental illnesses

A further barrier that many people experience when trying to access treatment, is the focus on symptoms and physical health.  Once they reach a certain weight, they are considered “recovered” and support is taken away at a time when it is most needed.

What I hear all the time through my work with Beat and have experienced myself is that this is the hardest stage of recovery.  All the coping strategies have been taken away but mentally things can feel very much unchanged.  It is acknowledged – for the most part – that weight is only one measure of health in eating disorder treatment, and yet it is too often conflated with recovery.  What we found when reviewing the literature for the new guideline is that weight gets conflated with recovery all the time because it is easy to measure, and so terms like recovery and relapse have started to lose meaning because recovery means “weight restored” and “relapse” means “weight loss after treatment”.

There is too little emphasis on the psychological change which is needed for things to be different for the quality of people’s lives to have improved by the time they finish treatment. This has proven to be problematic when writing a clinical guideline on eating disorders as there is no agreed upon definition of recovery. We need more research into this but also more conversations with patients. I had been in treatment for over 10 years before a psychiatrist asked me what I wanted out of my treatment. Maybe recovery would not be so hard to define if patients were engaged more collaboratively with their care.

Language matters

I also think the language used when talking to patients is important but it’s often overlooked.  It’s not uncommon to hear stories of people being labelled “treatment resistant” or of being told by clinicians that they will never get better, that their inability to change is because they don’t want it enough – the implication of course being that “wanting to change” should somehow be enough to make that change happen.  It doesn’t work like that – and I know that.

My own time in treatment was often a fraught process because the professionals involved in my care so openly expressed frustration as I struggled with change, and I felt blamed and isolated.  As it transpired, I was not at all treatment resistant, I needed different treatment.  Blaming patients for ineffective treatment must stop.  What we know about eating disorders and the treatments we currently use is that not everybody responds in the same way.  That should be a time to pause and reflect on the treatment, not a time to dismiss the patient as untreatable.

There is always hope

When I think about the patients I have met at focus groups during my time as an Ambassador for Beat, or through my own time in hospital, I think of people who have struck me as determined, thoughtful, selfless, and caring. Yet they all have stories of medical professionals labelling them as selfish, manipulative, controlling and somehow responsible for their difficulties. These are people who almost always want to get better and yet feel paralysed to a point where the fear of change outweighs the fear of staying the same. For me I began to get well when the balance tipped, and I was more afraid of staying the same than I was of making changes. What the evidence we have looked at shows, is that it doesn’t matter how long someone has been unwell or how many times they have been in and out of treatment, change is possible and there is hope of life beyond an eating disorder.

The guideline development group had long discussions around terminology and it was a deliberate decision to avoid using phrases like “treatment resistant” or language that blames patients in this guideline.  My hope is that this will bring about much-needed change in practice and patient experience.

Click here to read the full guideline.

First diagnosed with anorexia at the age of 12, Ellen Maloney spent her teenage years and 20s in and out of treatment.  Now in recovery, Ellen uses her platform as an Ambassador for Beat, the UK’s leading eating disorder charity, to channel her passion for both raising awareness and understanding of mental health difficulties and campaigning for easier access to treatment.

Ellen has also written articles about her experiences for Young Women Scotland, American Association for Suicide Prevention, Third Force News, and The Guardian.

Ellen is studying Philosophy and Psychology at the University of Edinburgh, and in her free time can be found translating TED talks or pole dancing.