Shift the narrative around eating disorders for Eating Disorders Awareness Week 2019: share stories, not sickness

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You don’t need to be skeletal to have an eating disorder

February 25th -March 3rd 2019 is Eating Disorders Awareness Week here in the UK. Around 1.25 million people in the UK are suffering from an eating disorder at any one time (Beat, 2017) and many, many more will have disordered eating or being in stages of partial recovery from their mental illness.

While anorexia and bulimia are most commonly diagnosed in girls and young women, eating disorders affect people of all ages, genders and races and are not always visible. Most people who struggle with an eating disorder will not become underweight and many successfully hide their problem from the people around them.

Having struggled with an eating disorder for twelve years now, I know how important Eating Disorders Awareness Week is in breaking down the misconceptions around eating disorders, and to encourage and signpost people towards treatment and help. I am particularly in favour of this year’s theme ‘Why Wait?’ which pertains to the long and lengthy wait eating disorders patients face before they access treatment.

It normally takes around three years after the emergence of symptoms before sufferers seek help, and then they are placed on extensive waiting lists in order to begin treatment, or in many cases, they are refused treatment at all. I was in this boat, it took me a very long time to accept that I wasn’t fully recovered from my teenage anorexia, and when I finally got referred to an eating disorders service, it took fourteen months for my appointment to come through. During which time my symptoms and my physical health worsened. Beat are trying to change this with their campaign to impose standard waiting times for adults with eating disorders, which mimic those found in CAMHS.

However, despite its potential, the one part of Eating Disorders Awareness Week that I am not looking forward to is the emergence of anorexia memoirs which detail people’s lowest weights, their skinniest photos, their diet plans and their exercise regimes. Journalists often ask sufferers for this stuff because they think it sells papers and they rely on ‘shock factor’ tactics to try and explain something that most people don’t understand. It doesn’t aid understanding at all: it just perpetuates stereotypes that everyone who has an eating disorder is skeletal.

At worst it is dangerous and triggering to current sufferers who may choose to mimic the behaviours they read about.

There is also a huge issue of representation here: the majority of stories you will read during EDAW will be from young white women who suffered from anorexia. We won’t hear many stories of people who struggled with bulimia or binge eating disorder, or OSFED. We won’t hear from many men with eating disorders, and we are very unlikely to hear from older people, or people from BAME communities, or the LGBTQI+ community, or disabled people who also struggle.

Sharing stories is so important: I enjoy reading stories of people in recovery or recovered from their eating disorders, it inspires me. Recovery is so damn difficult everyday, it’s full of ups and downs and the eating disorder voice can be completely relentless at times. It’s important to me to know that other people have been through it and come out the other side. For the general public, or those supporting somebody with an eating disorder it’s important to hear these stories to understand more about how to help and to reduce the stigma and shame around eating disorders.

But let’s do it responsibly.

If you or somebody you know is struggling with their relationship with food visit Beat at https://www.beateatingdisorders.org.uk/ for information and support.

For support and information about mental health visit Mind at https://www.mind.org.uk/

If you need immediate help in a mental health crisis please call the Samaritans on 116 123 (freephone)