As you read this I’m probably tucking into my third chocolate bunny, with a side of hot cross bun. It wasn’t always like this. When I was 18, I was admitted to a mental health ward. I’d been swinging between anorexia and bulimia for three years, but the tipping point was a suicide attempt one night during the summer holidays after my A-levels.
I entered the ward in the early hours of the morning and had been discharged again by that afternoon, having spent the day refusing to eat, crying into a ham sandwich. The nurse gave me a rub on the shoulder as I was discharged. “You’ll be fine,” she said, “You have good grades, and beautiful hair.”
It was another four years – my weight unstable and my mental health waning – before I received treatment for my eating disorder. But that day was the deepest I ever delved into NHS care for my illness. The buck stopped with the hospital scales that put me at a “healthy” BMI (body mass index) – I was OK according to that little number. No matter that I was sobbing at the sight of a sandwich. In a system that’s so overstretched and underfunded, there’s little room left for those who don’t sit at an extreme; and when it comes to eating disorders, that extreme is the mythical, magical number that separates a “healthy” from “underweight“ BMI.
Would someone have noticed my anorexia and bulimia if I had managed to dip below that BMI threshold? I feel a bittersweet stab of disappointment that I never “made it”. When we set eating disorders into a matrix of statistics, the criteria for care – designed to set a standard to ensure treatment for the most vulnerable – become goalposts. Not quite thin enough to get care? Become thinner.
Despite the fact that an estimated 6.4% of people in the UK will experience an eating disorder during their life, they remain one of the least understood and most fatal mental illnesses. Eating disorders have the highest mortality rate of any mental health problem, and only 60% of those who survive anorexia go on to fully recover. When the costs of leaving eating disorders untreated are so great, why are so many people left to suffer? There has to be a better way.
In Sheffield, where I live, there’s an organisation working to fill in the gaps. South Yorkshire Eating Disorder Association – SYEDA – is a charity that helps those with eating disorders, their carers and their peers. While those in immediate physiological need are siphoned off to the NHS, the association focuses on “mild to moderate” cases, catering to those who may not qualify for other care. As someone who spent years trying to solve my problem alone, I feel a pang of sadness when I walk through their cosily furnished waiting room, book library and counselling rooms: I wish I’d had this when I needed it.
The association’s chief executive, Chris Hood, told me that SYEDA does not believe in a single cure-all treatment: it’s a mixture of alternative therapies, counselling, support groups and outreach programmes that thread together to create a network of care. This helps stop vulnerable people falling through the cracks, whether they are just experiencing the first twinges of anxiety around eating or have been in treatment for years. At the same time support groups run every Tuesday night for the families and friends of people with eating disorders. This falls into line with the approach to care at the Maudsley hospital, in south London, which puts family at the heart of eating disorder recovery. In this holistic kind of treatment, nobody is alone in their illness.
SYEDA also extends its influence outwards, sending envoys into the community to change perceptions, increase awareness and foster a broader support. Some of their most important work is done in schools. When I was young I rejoiced at being in a place where I could eat as much or as little as I pleased, safe in the knowledge that nobody was keeping an eye on whether I slid my lunch into the bin or pocketed a second bread roll. By briefing nurses, teachers and carers about the signs and symptoms of eating disorders, SYEDA narrows the potential for this kind of freewheeling approach, and the eating disorders it can herald.
If only every area had such an association. But wouldn’t it be better if they didn’t have to exist at all? I dream of an NHS robust and well-funded enough to absorb these models into itself, and provide cohesive, nationwide care. As it is now, the gaps in the system gape wide.
I recently finished putting together a one-off magazine about mental health called Do What You Want, the profits from which go to mental health charities such as Mind or Beat, the leading eating disorder charity. In doing so I interviewed a young woman called Abi Feasey, who had been moved hundreds of miles away from home in the north-east of England to be treated. Such stories aren’t uncommon. There’s enormous strain on eating disorder inpatient units; and even once sufferers enter NHS treatment, there’s no guarantee that they’ll be given a bed, let alone one on a specialist eating disorder ward, close to their loved ones.
To solve problems like this we can’t just patch up the current flawed system. To challenge the stereotypes, misdiagnoses and stigma that those with eating disorders face, we need a revolution. The archetype of disordered eating – the thin, white, teenage girl anorexic – is an idea as embedded in the minds of many medical professionals as it is with the general public.
This could lead, in some cases, to doctors embracing the kind of fatphobic rhetoric that condones or even encourages disordered eating, so long as “fat sufferers” lose weight. It can also leave those with a binge eating disorder, or other difficult to categorise eating disorders that fall outside the anorexia-bulimia binary, without adequate care.
It’s only by reframing the perception of these illnesses as about how we feel, and not how we look, that the root causes can be tackled. The health service can’t do this alone, society must engage with supporting and safeguarding young people at risk from eating disorders. Changing how we think and talk about food is a good start.
No more clean eating fads, no more “dirty” burgers – let’s remove the moral judgments from the food we eat. We need to teach young people that food – and cooking – are joyous, transformative things. Rather than marching into schools with Jamie Oliver’s school dinner reform or imposing sugar tax and health imperatives from above, we need to completely overhaul the way that we, as a society, approach food. Our food is what becomes the fabric of our minds and bodies: we deserve to eat plenty, and eat well.
And those within the establishment – doctors, counsellors, that one nurse who told me I’d be fine because I have nice hair – need the training and support to meet the complex needs of those living with eating disorders. Whatever biases and preconceptions doctors carry with them, they need to be able to leave them at the surgery door. More needs to be done to help staff throughout the health service – something that Beat is calling on the government to provide.
But it is only collectively that we can demolish the idea that only thin people, or girls, or young people, or white people, can experience eating disorders. Perhaps then my dream of a healthcare system that makes room at its core for individualised, person-centred care can become a reality.
In the meantime, I’ll carry on making my mental health magazine. I’ll volunteer at SYEDA and carry on training to run a marathon for Beat. I’ll eat well, scoff some Easter eggs and a hot cross bun and nourish my soul, so that I can pitch in with all I’ve got. You should too.
• Do What You Want is out on 28 April
