So much sadness attends the case of 19-year-old Averil Hart, who died from anorexia in 2012. It’s only now, finally, after a five-year wait, full of stalling, buck-passing and evasions, that her family has managed to get clear answers, and apologies, for how she came to be failed so comprehensively by an array of doctors, hospitals and specialist units.
As an “adult anorexic”, studying at university, Hart slipped through the net so many times, it could no longer even be described as a net – just a few broken strings flapping uselessly over an abyss. It comes as a small comfort to the Harts that since Averil’s death, and others like it, £150m has been invested in NHS eating disorder services, including introducing the first-ever eating disorder waiting time standards. However, it seems that changes need to go even beyond that; into wider society, where anorexia (I’m employing it as a blanket term for all food disorders) needs to be respected for what it is – a deadly psychiatric condition, where rejection of food is merely a symptom.
Earlier this year, TV news presenter Mark Austin and his daughter, Maddy, made a Channel 4 documentary about her anorexia, the devastating effect on their family and how difficult it was to get help. Austin called anorexia a “mental disease that kills”. I thought at the time: “Nail. On. Head”. Anorexia wasn’t about silly, vain, melodramatic, hot-housed girls throwing up their suppers because they wanted to fit into teeny-tiny jeans. This was about individuals, including a disproportionate number of young females, but by no means exclusively, who were terrified, ill and desperate for the help that they were simultaneously determined to push away.
This is yet another reason why anorexia is so tragic – the victims are so mesmerised by its enveloping sea that they effectively help to drown themselves.
Anorexia continues to be misunderstood, even stigmatised and disparaged. There’s the erroneous belief that the anorexic could “snap out of it”. The notion that beneath the darkness lurks something manipulative, even frivolous. A schizophrenic wouldn’t get accused of attention-seeking, but the anorexic often is, almost to the point where it’s become an official stage of the disease. (Stage one: stop eating. Stage two: get accused of wanting attention. Stage three: get told to snap out of it.) In truth, the only reason someone with a food disorder craves anything (attention; isolation; an entire chocolate fudge cake they can throw up in secret later) is because the illness orders them to. Nor could they “snap out of it”, just as a schizophrenic couldn’t snap out of it.
In this way, the anorexic suffers a double burden. Not only for having a mental illness (that isn’t tangible, like a broken leg), but also for having a condition that is so open to widespread misconception and disrespect. It’s almost as if anorexia were unofficially classed as a Cinderella disease – a poor relation to other psychiatric disorders – despite being so high profile.
Indeed, while those creepy pro-ana sites are rightly slammed for glamorising and promoting the condition, arguably there’s a trace element of this fetishisation in the public attitude to anorexia – the way that people are willing periodically to read about anorexia, watch programmes about it and basically gawp at all the suffering in the manner of Victorians visiting what appears to be a predominantly young female Bedlam.
Which is all very well – anorexics need all the exposure and help they can get –except that, for too long, this wasn’t translating into adequate funding, nor even increased respect for the disease itself. Averil Hart’s death was a tragedy, all the worse for being avoidable. But if it has boosted not only funding, but also awareness, then something major has been achieved. It has never been about the calories.