Having had an eating disorder yourself, is there a message you wish to deliver to those who perhaps are still in the dark or confused by the concept of what an eating disorder is? Whilst most people have come across the concept of an eating disorder, there continues to be a lot of misunderstanding and confusion amongst both members of the public and medical professionals as to what an eating disorder ‘really is’ and who is affected by them, as well as more specific points surrounding the different types of eating disorders and how to support someone experiencing one of these conditions. The term ‘eating disorder’ describes the range of psychological, biological, emotional, behavioural and social disturbances characterised by difficulties surrounding food and eating. It is common for the term eating disorder to be associated exclusively with Anorexia Nervosa and Bulimia Nervosa, and in particular, inaccurate stereotypical representations of these disorders as simple extensions of dieting behaviours carried out by appearance and diet obsessed young women. However, other eating disorder diagnoses exist, such as Binge Eating Disorder, Avoidant/Restrictive Food Intake Disorder (AFRID), Pica, Rumination Disorder and Other Specified Feeding or Eating Disorder (OSFED), to describe a much wider range of ways in which eating disorders manifest for people of all genders, ages, race and ethnicities, socioeconomic background, dis/abilities etc. Clinically defined eating disorders exist on a continuum with disordered eating behaviours that are increasingly normalised as part of everyday life. As a result, many people do not believe they are experiencing an eating disorder and/or do not receive an accurate diagnosis, and therefore do not receive adequate treatment and support. I firmly believe that paying attention to people’s experience of distress and quality of life is more useful in determining whether someone needs help with their relationship with food than strict adherence to the criteria laid out by official guidelines

From a biological perspective, what do you think makes someone more likely to develop an eating disorder than another? There is a genetic component to eating disorders, with heritability estimates for anorexia nervosa ranging from 33% to 84%, and research suggesting that the relatives of people with eating disorders have a 10-fold greater lifetime risk for also experiencing an eating disorder. Often, the line between biological and sociocultural or environmental factors is blurred. For example, the physiological state of starvation creates a set of biological conditions that may predispose someone to an eating disorder or accelerate the disorder’s progression. However, the reasons as to why someone would find themselves in a position of low energy availability is usually mediated by sociocultural and environmental influences, such as exposure to media messages leading to intentional dieting, a loss of appetite as a result of anxiety or grief, the experience of food scarcity or poverty, or high energy expenditure without adequate refuelling as a consequence of involvement in competitive sport. Recognizing how biology, psychology, environment and sociocultural context are connected allows us to approach treatment and prevention from all angles.

What do you feel should be the main goal of eating disorders awareness week? The goal of eating disorders awareness week needs to go beyond simply raising general awareness about eating disorders and instead focus specifically on raising awareness on behalf of marginalized groups who do not receive adequate representation in mainstream mental health awareness conversations, such as trans and gender-non-conforming people, older adults, ethnic minorities, and people with disabilities. We need to be intentional in our awareness-raising efforts and use awareness as a means of calling for action. Awareness should never be the end goal. What people with eating disorders need is not awareness per se but rather increased access to diagnosis and treatment, better treatment options, more research, greater public understanding, less stigma, and a sociocultural environment that supports physical and mental wellbeing.

In respects to treatment, what approaches have you experienced and found to be the most beneficial? During my eating disorder, I experienced both residential/inpatient treatment and outpatient treatment. Inpatient treatment focused heavily on the medical, physical and behavioural aspects of eating disorders, such as achieving medical stability, a healthy weight and normalised eating patterns. Outpatient treatment placed greater emphasis on addressing psychological, emotional and social difficulties, and made use of a range of therapeutic techniques including acceptance and commitment therapy (ACT), cognitive behavioural therapy (CBT) mindfulness and self-compassion focused therapies at different stages in my recovery journey. I have been fortunate to be able to continue to receive private therapy in the years following my initial eating disorder recovery in order to address the core issues such as anxiety which I, like many others, still experience in other areas of life.

In contrast, which treatments/therapies did you find to be unhelpful or lacking? In my personal treatment experience, there was a lack of psychological support alongside the focus on physical recovery and weight restoration in inpatient treatment. As a result, I was discharged without having made the psychological progress necessary to sustain recovery and relapsed shortly following treatment, landing me in an all-too-common cycle of relapse and readmission. There is a need for more carefully planned discharge procedures and continued care that extends long after people achieve initial symptom remission. At a broader level, the shortage of inpatient beds and long waitlists for outpatient therapy means that many people do not receive the help they need. Early intervention is key to prevent people deteriorating to crisis point, and follow-up care is equally important to prevent relapse and support ongoing recovery.

To those both contemplating and actively recovering from an eating disorder, what advice would you give to them? It’s common for people to approach recovery with a set of preconceived expectations about what the recovery process should like, how long it should take, and what it means to be recovered, based on other people’s stories and experiences of recovery. Whilst sharing stories of recovery is important, it can lead to unhelpful comparison and move people away from discovering what recovery means to them in the context of their own life. On the contrary, some people struggle to imagine what life would be like without an eating disorder, and many are ambivalent about whether or not they are ready to, or even want to, recover. Whilst parts of recovery will necessarily be linked to specific eating disorder behaviours and symptoms and can be defined by the remission of these symptoms, other parts of recovery are much harder to define and involve an ongoing process of discovering a life and identity outside of the eating disorder. I would encourage people recovering from eating disorders, as well as those supporting them, to be open-minded about the recovery process and where it may take them. I believe full recovery from an eating disorder is possible, but also that people can make steps towards recovery and experience improved quality of life even if they feel unable to fully move beyond their eating disorder.

You run a very engaging and popular twitter account, @takeonEDs. What prompted you to start this channel, and do you have bigger plans for it? I began tweeting @takeonEDs when I began researching eating disorders at university in the years following my own recovery. I wanted to use the channel to connect with people who were interested in eating disorders, and in order to keep up to date with the most pressing issues pertaining eating disorders. I have found Twitter to be an inclusive, democratic, informative and collaborative space for discussing these issues. It provides a unique opportunity for treatment professionals, researchers, activists, policy makers and people personally affected by eating disorders all over the world to share their thoughts and ideas and engage in productive dialogue. My aim is to continue to use the account to reach more people with my research and activism and to learn from people who can offer a different perspective than my own.