Everyone knows someone with an eating problem, even if we don’t think we do.
Despite the bias in our social consciousness towards anorexia – represented by the stereotype of an ultra-skinny, white, middle-class teenager – the vast majority of people with diagnosable eating disorders are not underweight.
Besides the 1.25 million Brits living with an eating disorder, there are more of us struggling with difficult relationships with food, body image and exercise than ever before. We can all benefit from hearing positive messages that challenge the relentless pressures we face in these areas of life today.
What are eating disorders?
But despite the great opportunity to educate and inform people about eating disorders, there is always a risk when we represent complex and diverse problems in simplistic ways.
Eating disorders fit into three diagnostic categories – anorexia, bulimia and binge eating disorder.
Having lived with anorexia or bulimia for over half of my life, I am in favor of everyone having a basic understanding of these conditions. They are after all are far more common than physical health conditions that we all have a good awareness of, such as type 1 diabetes or breast cancer.
And yet, eating disorders are so varied and complex that fitting peoples’ experience into neatly boxed-off categories that happen to represent clusters of symptoms often doesn’t reflect the lived experience of the disorder.
I’ve often felt frustration and alienation in the face of fixed and narrow ideas about what constitutes an eating disorder.
People struggled to understand that I would binge eat massive quantities of food when I was at a low weight with anorexia.
Surely the anorexic does everything they can to avoid food? These days, people struggle to understand how I have a normal weight yet still have a drive towards restricting my food intake, or how I have a much more desirable and toned body than when I was underweight, but dislike it just as much.
Anorexia and bulimia
An example of how arbitrary the distinction between diagnostic categories can be is how, for me, the symptoms of my eating disorder between anorexia and bulimia were almost identical.
Binge eating and vomiting cycles mixed up with compulsive exercise and poor mental and social functioning have been the same at a normal weight (where my experience is is called bulimia) or at a low weight (where is is called anorexia).
Only in the very depths of anorexia did very dramatic weight loss make a significant difference to my symptoms – where everything from my emotions to my vital organs started to shut down.
So it is quite easy to see that eating problems are actually expressed in very individual ways. The fact that they can effect any one of us – in all our colorful diversity – means that we need to regard fixed ideas of what eating disorders are as a very loose template.
Just like how we need to move on from the anorexic stereotype, our first priority in trying to understand someone’s unique experience is to look beyond our own frame of reference – however informed we think we are.
We need to change how we think about eating disorders
The same is the case when we think about what might cause eating disorders – their causes are many and varied.
Something as profound as being unable to safely fulfil a basic function of living isn’t going to be caused by a single, trivial factor such as happening to come across an advert for diet pills.
Even mental health services get caught up in trying to understand the causes of peoples’ eating problems in an unhelpful and trivialising way.
I can’t count the number of times I have been asked whether I have been abused as a child, often in a very casual and inappropriate way that would never encourage me to talk about it if it were the case.
Sexuality isn’t a cause of an eating disorder
The same with sexuality. Professionals have often seized upon the fact that I am gay to explain why I have the problems I have.
But contrary to the stereotypical narrative, ‘coming out’ was never really a thing for me. I was always quite comfortable with my realization that I was attracted to men, as were my family.
My total rejection of my body wasn’t about rejecting my sexual orientation. Having it reduced to this made me feel like my actual experience was being overlooked.
The idea abuse or sexual orientation issues were the only acceptable narratives to explain what I was going through left me feeling like I was ‘invalid’ – ironically a term we used to use to describe the sick.
Whilst I didn’t have an issue with my sexual orientation, I did have an issue with my sexuality in general. It wasn’t about being attracted to men, it was about having a sexuality at all.
It was about being in my body, with all of its drives, desires, sensations and emotions. Growing up, I had never learnt to regulate any of these – to channel my mental, physical or emotional energy. Sexuality was just a part of this picture.
Don’t write-off my experience
But there was never any space to talk about this in the therapy room, unless it was to be hijacked by a professional using my sexual orientation to write-off my actual experience as something I grow out of.
I wasn’t able to talk about the abusive relationships I was in, about my inability to control my untamed libido, about how I would use sex for affirmation and proof that I was worth something – even if as an object.
There wasn’t space to talk about the risks I would take because I felt worthless, or about how buying food for binge eating made me financially desperate enough to accept money for sexual favours.
All of these factors were important to maintaining my eating disorder, and the complex relationship between body image, sex, eating and exercise were all things that I needed to talk about.
Services are still not getting this right.
I recently delivered training for an NHS eating disorders service where staff openly admitted that they didn’t know how to talk about sex, and that they rarely did.
Two weeks ago I had an assessment for starting therapy with a specialist eating disorders service, and between a form of over 120 questions and a 3 hour face-to-face consultation, I wasn’t asked once about sex.
Yet on a physiological basis as well as psychologically, sexual function changes with eating disorders.
Well vs unwell
As much as eating disorders awareness focusses on experiences of illness, we need to remember that being ‘well’ is as diverse and individual as being ‘unwell’.
Because I look fit and healthy these days, I am nearly always viewed as ‘recovered’.
But my struggles with my mental and physical health are still profoundly difficult now. Whilst I am recovering, recovery is different for everyone and doesn’t always fit into the convenient narrative of the strong, determined individual overcoming the odds to find success, happiness and a campaigning voice for others.
No more labels
It’s time we stopped labels – from sexuality and gender identity to economic status and race – from acting as barriers to seeing the unique person underneath.
Educating ourselves in the basics of eating disorders is great, but we should never impose our framework of understanding onto others’ experiences in a way that overrides what they are actually saying is true for them.
Our priority needs to be listening, without judging, to how people communicate their own diverse stories of life, accepting that what they say is real and worth listening to.
We are all valid.
James Downs, 29, is from Cardiff. He has experienced a major eating disorder from the age of 16. James volunteers to develop eating disorders services, campaigns for changes in policy. James also studies psychology at the University of Cambridge and teaches yoga. You can follow him on Instagram and Twitter: @jamesldowns
It’s Eating Disorders Awareness Week and advocacy group, Beat wants to out stories of how eating disorders affect people from all walks of life in the spotlight and stand together to demand the support that those affected need and deserve. Visit https://www.beateatingdisorders.org.uk/edaw to find out how you can be involved.