Recovery from an eating disorder, regardless of the specific diagnosis, is often convoluted, confronting, challenging, and SLOW. People unwell with an eating disorder frequently feel ambivalent towards recovery and relapse rates across eating disorder diagnoses are disturbingly high (according to some reports, more than 50%), especially in the first year following treatment. Therefore, it is not surprising that just the phrase ‘eating disorder recovery’ can feel elusive. However, how we think and talk about eating disorder recovery can have important clinical implications. So, despite the difficulties and uncertainty, more conversations about eating disorder recovery are so important.
Last month, I attended the Academy for Eating Disorder’s 2018 International Conference for Eating Disorders (ICED) – the world’s largest eating disorders professional conference. Approximately 1,300 researchers, clinicians, and parent-patient advocates from 44 countries attended this year’s annual four-day event, which took place in Chicago and was co-chaired by Professor Phillippa Diedrichs (my PhD supervisor at the Centre for Appearance Research – woo! I mean, nbd) and Professor Kristen von Ranson, an eating disorder research expert based at the University of Calgary in Canada. Following Laura and Eve’s recent accounts in relation to their own recovery, I wanted to share some thoughts from the conference, in particular, from the dedicated plenary session on eating disorder recovery with leading eating disorder experts: Professor Anna Bardone-Cone (University of North. Carolina), Professor Phillipa Hay (Western Sydney University), Amy Pershing (Founding Director of Bodywise Binge Eating Disorder Program), and Associate Professor Anna Keski-Rahkonen (University of Helsinki).
We need a shared definition of recovery
Pick up any academic paper on eating disorder recovery or treatment and the chances are you will find a comment/complaint along the lines of “there’s no common consensus on what constitutes eating disorder recovery”. By way of illustration, Phillipa Hay highlighted that a recent review paper published last year in the Journal of Eating Disorders commented that there are almost as “many definitions of relapse, remission, and recovery as there are studies of them”. This is unhelpful from a research perspective because without a standard definition of recovery, we cannot, for example, effectively compare treatment interventions across studies, which is important when it comes to refining and improving interventions, which in turn as repercussions on people unwell with eating disorders.
We need a holistic definition of recovery
The need for a more holistic definition of recovery that includes physical, behavioural, AND cognitive indicators feels archaic, yet all too often researchers and treatment providers determine recovery solely based on physical (e.g. BMI) and behavioural (e.g. absence of vomiting, binge eating, restricting) criteria. Psychological or cognitive factors such as body image, attitudes towards food and eating, or mood are often not included in definitions of recovery. Just looking at physical and behavioural aspects is more suggestive of remission than recovery per se, and inevitably this makes it much harder to identify who is at higher risk of relapse or determine what further treatment is needed. I appreciate the eyes of people with lived experience of an eating disorder are probably rolling out of their heads at this point, but what may be of interest is that part of this problem can be traced to the historic disproportionate focus in eating disorder research on anorexia nervosa where weight is arguably most relevant. Accordingly, some professionals including Anna Bardone-Cone are advocating for a shared, cross-diagnosis, holistic definition of eating disorder recovery. This may be particularly useful given how people can migrate across different diagnoses (e.g. from anorexia to bulimia or from binge eating disorder to bulimia).
Weight suppression > BMI Thresholds
There is some debate among eating disorder professionals on the value of BMI thresholds to determine recovery (i.e. the person is in the ‘healthy weight range’) compared to absence of ‘weight suppression’ – the difference between current weight and pre-eating disorder weight. Looking at weight suppression feels a lot more helpful and inclusive. For example, many people can still be weight suppressed despite some weight gain bringing them into a ‘healthy BMI range’. This is significant because research shows that weight suppression is associated to (certain) eating disorder behaviours such as restriction and thoughts such as negative body image.
We need to address weight stigma / fatphobia to facilitate eating disorder recovery
There’s a LOT that can be said about this, but something Amy Pershing said at ICED stood out: “We are asking our clients to recover in and live in a world that is hostile to size diversity” i.e. we live in a fat-phobic society that is harmful for people of size in general and arguably particularly harmful for people of size trying to recover from an eating disorder. For people who are naturally bigger, weight restoration within the process of recovery can mean being re-exposed to the stigma, oppression, and daily micro-aggressions that may have contributed the development of their eating disorder in the first place. Remembering that all eating disorders including binge eating disorder can include restrictive eating, telling someone with an eating disorder to go on a weight-loss diet is triggering and harmful to their health. Yet, this is often the unsolicited advice given by healthcare professions to people living in a larger body.
Full recovery is slow but possible
To end on a positive note (!) while it’s true that eating disorders have the highest mortality rate of all mental health disorders and relapse rates are very common in the first few years following treatment, when we look at the bigger picture, most people with eating disorders go on to recover and lead full lives. We just need to follow up individuals for longer periods of time. For example, one large-scale twin study from Finland on the long-terms outcomes of anorexia in community settings (i.e., not people in inpatient/residential treatment) found that 10 years following diagnosis, most women with a history of anorexia recovered and closely resembled their unaffected peers in terms of education, employment, health, and financial situation.
Two final thoughts from ICED for people currently going through eating disorder recovery:
Recovery and healing from an eating disorder takes a whole load of courage, self-compassion, perseverance, and time, but it’s totally possible.
There is no set path to recovery, your recovery is your own, define it.
