Those who die of anorexia don’t always do so surrounded by sympathy and understanding

Anorexia might win the eating disorder visibility contest but it doesn’t win any on-the-ground PR battles.

Anorexia nervosa may not be the most common eating disorder but it’s the one that gets most attention. More visually arresting than all the others, it commands a mix of awe and disgust. Those with binge eating disorder are indistinguishable from those who are simply large. Bulimics won’t be spotted unless there’s a bite-marked hand or swollen jawline. Sufferers of “Eating Disorder Not Otherwise Specified” -- the pauper of the ED world, undeserving even of a proper name -- pass by unnoticed. Anorexia sufferers, on the other hand, stand out (or at least the very thin ones do). But does that mean they receive the greatest outpourings of sympathy, compassion and support?

I think most people have mixed feelings towards anorexia. If you’re the loved one and/or carer of an anorexic, you’ll be aware of all those times when you’ve thought, “But why doesn’t he/she just stop? Why is this person so selfish? Why is he/she doing this to me?” If on the other hand you’ve never been close to an anorexic, you’ll probably claim to be sympathetic, at least in an abstract sense. But are you? Or do you actually think anorexia’s really attention-seeking and annoying? When you read an article about an anorexia sufferer, isn’t there just a bit of you that thinks, “Oh, for fuck’s sake”? It’s not that you want to, but really. For fuck’s sake, eat something. How hard can it be?

Charlotte Bevan, founder of the project Charlotte’s Helix, describes her daughter’s anorexia diagnosis as something which sent her “down a rabbit hole of blame, misinformation, outdated ideas and practices”. We still don’t understand anorexia and what’s more, many of us are still not sure how much we even want to. After all, anorexics are irritating. Besides, don’t they get plenty of well-funded specialist care? Don’t they (ironically) get the largest slice of the eating disorder pie? Due to anorexia’s status as “leader” of the eating disorders, this is a common perception, but it’s far from the truth.

Bevan argues that “treatment for eating disorder patients is woeful and inadequate and, in some cases, dangerous”. I think that, broadly, she is right. Some excellent treatment projects exist but provision is patchy and even when it’s available success rates vary. Meanwhile, many anorexics still experience brutal, punitive force-feeding regimes which may not be their best interests (neither physically nor mentally) and some hospital staff find it hard to hide their resentment of such apparently selfish, uncooperative patients. I write this not in judgment of those who work with anorexics; I think their often harsh responses reflect a wider ambivalence towards the disease. In a society that idolises thinness and restraint, the anorexic may not choose to be ill, but to outsiders starvation can look like an obscene form of moral posturing. I don’t think that’s what it is but I know, both from how I’ve responded to others and how they’ve responded to me, that that’s how it appears.

The Charlotte’s Helix project seeks to challenge these perceptions. Bevan’s hope is that through a greater understanding of the genetic markers for anorexia “people will become educated about what an eating disorder is - nobody's fault and nobody's choice - and stop perceiving eating disorder patients as wilful, vain or attention seeking”. The project is linked to the Anorexia Nervosa Genetics Initiative, “a global effort to detect genetic variation that contributes to this potentially life-threatening illness”. Charlotte’s Helix seeks to add 1,000 DNA samples, taken from long-term sufferers of anorexia in the UK, to the ANGI. To make this possible they are currentlyin the process of raising funds.

I find this project fascinating but also challenging. How far do we need to take anorexia from a social context and place it into a genetic one in order to make it “acceptable”? Does this represent progress or is it letting other forces off the hook? According to project spokesperson Laura Collins, “the idea that eating disorders are a response to trauma or pressures is one that still exists, widely, but simply does not stand up”.

Unfortunately, the myths still exist, because they are "attractive" and fit into our cultural ideas about food and appearance and psychology. The problem with those ideas is they don't help with treatment. Eating disorders are treatable, but that takes evidence-based treatment and shifting away from these myths.The DNA project is actually part of that shift. We know EDs are heritable (53-83% of the risk is genetic), but still don't know what factors influence vulnerability.

It’s an interesting point. Why do some people who are subject to certain pressures or traumatic experiences develop anorexia while others do not? Is it a moral failing, a long-nurtured weakness or something else? I worry that at this point it all starts to get terribly philosophical -- is anyone, really, a “bad” person? Is everything down to our genes? etc.  -- but if there is any chance that the DNA route could lead to more nuanced, less emotionally charged approaches to anorexia, perhaps it’s still a route that’s worth exploring.

All the same, I think there should be some provisos. The first is that, however anorexia sufferers make us feel, we must accept it is a horrible illness, regardless of what causes it. Anorexia sufferers deserve our care right now. It is difficult to set aside anger and revulsion when faced with behaviour that appears so nonsensical and hostile but however manipulative an anorexic may appear, that’s not what it’s like from the inside. Anorexia sufferers are consumed by hunger and their fear of hunger. It’s a miserable way to be. It shouldn’t matter whether the illness is culturally, socially or genetically motivated, or a mix of all three factors. Anorexia sufferers require our support.

The second is that, even if there is an “anorexia gene”, this doesn’t have to mean cultural influences aren’t also to blame for it and other eating disorders. Perhaps such a gene is only the difference between whether you’d get anorexia or plain old eating disorder not otherwise specified. Either way, as long as there’s Vogue, the sidebar of shame and the 5:2 Diet you’re pretty much doomed. I mention these examples not to imply that ED sufferers are flippant and vain, but to stress that people in general (and women and girls in particular) are told every day of their lives that they need to eat less and take up less space. Forcing yourself not to eat when you are hungry and when food is available is a profoundly unnatural thing to do, yet even those who do not suffer from eating disorders are encouraged to live this way. Even if you don’t actually have binge eating disorder, bulimia, EDNOS or anorexia, someone, somewhere, will be telling you it’s a good idea to risk developing one of these horrendous conditions. Instead of seeing different eating disorders as “better” or “worse” -- or deriding all ED sufferers as the weak ones who fell for all those dieting messages -- we need to collectively challenge to fat-shaming and diet culture. To do so wouldn’t cure all eating disorders but it would definitely benefit us all. 

Anorexia might win the eating disorder visibility contest but it doesn’t win any on-the-ground PR battles. Those who die of anorexia don’t always do so surrounded by sympathy and understanding. One of my biggest regrets will always be the profound lack of compassion I and other anorexia sufferers showed towards the “worst” anorexic in our therapy group. She was the thinnest, the strangest-looking and the whiniest. She was suffering terribly, yes, but she got on our nerves. We thought she was a show-off for being that ill, and then of course she died. There is no glory in such a death. It’s a horrible, lonely waste, but even then we can make it less desolate. Fighting anorexia itself is complex, but challenging our own prejudices towards those suffering is something we can all do straight away.  

A poster alerting models to the dangers of eating disorders is displayed backstage at the Ashley Isham fashion Autumn/ Winter 2007 show during London fashion week, after the first 'size zero debate'. Image: Getty

Glosswitch is a feminist mother of three who works in publishing.

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"Labour are as pro-Brexit as the Tories": what do Sinn Fein's MPs really want from Westminster?

Its seven MPs are much less sympathetic to Corbyn's party than popularly imagined, and won't ever take their seats.

Should the Conservative minority government fall, what is Jeremy Corbyn’s route to power? The counterfactual as popularly understood goes like this: Corbyn would pick up the phone to his old pal Gerry Adams and convince Sinn Fein’s seven MPs to abandon the habit of a century and take their seats.

There are countless reasons why this would never happen, most of them obvious. One is more surprising. Despite Corbyn’s longstanding links with the republican cause, the Labour party is not all that popular among a new intake, which is preoccupied with one thing above all else: Brexit.

No wonder. Sinn Fein’s long game is an all-Ireland one, and the party believe the UK’s departure from the EU will hasten reunification. In the meantime, however, its priority is a Brexit deal that gives Northern Ireland – where 56 per cent of voters backed remain – designated status within the EU.

Pioneered by the moderate nationalist Social Democratic and Labour Party as an antidote to Brexit, designated status would allow the six counties in the North to continue to enjoy the EU’s four freedoms. But the idea is anathema to unionists and the UK government, and Sinn Fein sees little evidence that the Westminster establishment will make it work – not even Labour.

“They are as pro-Brexit as the Conservatives are,” says Mid Ulster MP Francie Molloy. “We’re anti-Brexit. We want to see the right of the people in the North who voted to remain in Europe respected.”

Simmering resentment over what the party perceives to have been broken promises on Tony Blair’s part – especially over legal protection for the Irish language, a key stumbling block obstructing the resumption of power-sharing – makes the already implausible deal even less likely.

“The Irish language act was something that Blair agreed to,” says Molloy. “So when people talk about us taking our seats, they don’t realise we would be backing a Labour government that wouldn’t be living up to its commitments either, and would be just as pro-Brexit as the Conservatives are."

That criticism may well surprise a lay audience whose working assumption is that Adams and Corbyn work hand in glove. But it is perhaps the best illustration of Sinn Fein’s parliamentary priorities: its seven MPs will not in any circumstances take their seats but use their Westminster presence to lobby ministers and MPs of all stripes while running constituency offices at home (they are unsalaried, but claim expenses).

Crucially, its MPs believe abstentionism strengthens, rather than weakens their negotiating hand: by their logic other parties need not and do not fear them given the fact they do not have voting power.

They will use their leverage to agitate for special status above all else. “Special status is the biggest issue that we are lobbying for,” says Molloy. “We feel that is the best way of securing and retaining EU membership. But if we get a referendum on Irish unity and the people vote for that, then the North will automatically join the EU.”

But that wasn’t always the received wisdom. That assurance was in fact secured by Mark Durkan, the former deputy first minister and SDLP MP beaten by Sinn Fein last week, after an exchange with Brexit secretary David Davis at the leaving the EU select committee. The defeat of the three SDLP MPs – two of them by Sinn Fein – means there will be no Irish nationalist voice in the commons while Brexit is negotiated.

Surely that’s bad news for Northern Irish voters? “I don’t think it is,” says Molloy. “The fact we took two seats off the SDLP this time proves abstentionism works. It shows they didn’t deliver by attending. We have a mandate for abstentionism. The people have now rejected attendance at Westminster, and rejected Westminster itself. We’ve never been tempted to take our seats at all. It is very important we live by our mandate.”

If they did, however, they would cut the Conservatives’ and Democratic Unionist Party’s working majority from 13 to a much more precarious six. But Molloy believes any alliance will be a fundamentally weak one and that all his party need do is wait. “I think it’ll be short-lived,” he says. “Every past arrangement between the British government and unionist parties has always ended in tears.”

But if the DUP get its way – the party has signed a confidence and supply deal which delivers extra cash for Northern Ireland – then it need not. Arlene Foster has spoken of her party’s desire to secure a good deal for the entire country. Unsurprisingly, however, Sinn Fein does not buy the conciliatory rhetoric.

“They’ve never really tried to get a good deal for everybody,” says Michelle Gildernew, who won the hyper-marginal of Fermanagh and South Tyrone back from the Ulster Unionists last week. “The assembly and executive [which Sinn Fein and the DUP ran together] weren’t working for a lot of groups – whether that was the LGBT community, the Irish language community, or women...they might say they’re going to work for everybody, but we’ll judge them by their actions, not their words.”

Molloy agrees, and expresses concern that local politicians won’t be able to scrutinise new spending. “The executive needs to be up and running to implement that, and to ensure a fair distribution. If there’s new money coming into the North, we welcome that, but it has to be done through the executive.”

On current evidence, the call for local ministers to scrutinise the Conservatives’ deal with the DUP is wishful thinking – Northern Ireland has been without an executive since February, when the late Martin McGuinness resigned as deputy first minister and triggered a snap election.

The talks since have been defined by intransigence and sluggishness. James Brokenshire, the Northern Ireland secretary, has had to postpone the talks deadline on four separate occasions, and has been criticised by nationalists for his perceived closeness to the DUP.

The final deadline for the restoration of an executive is 29 June 2017. Sinn Fein has called for Brokenshire to recuse himself in favour of a neutral chair. “His hands are tied now, completely,” says Molloy. “The Conservative party were always questionable on where they stood – they’ve always been unionists. The issue now is whether they can act neutrally as a guarantor to the Good Friday Agreement.”

He believes that question is already settled. “Legally, they have to act to ensure that nothing happens to damage that agreement – but we’ve already breached it through Brexit. There was no consultation. The people of the North voted to remain and it hasn’t been recognised. It totally undermines the consent principle.”

Just how they and Brokenshire interpret that principle – the part of the Good Friday Agreement that specifies the constitutional status of the North can only change by consent of its people – will be key to whether they can achieve their ultimate goal: Irish unity.

Molloy and Gildernew say the fact that 11 of Northern Ireland’s 18 constituencies voted to remain in the EU is enough for Brokenshire to call one within the next five years (though polling consistently shows that a clear majority of the province’s electorate, including a substantial minority of nationalists, would vote to stay in the UK). They are confident they can win, though, failing that, Molloy envisages it as the first in several referenda on unification.

But beneath the optimism lies the knowledge that the British government are unlikely to heed their calls. And, willingly absent from the Westminster chamber, they say the UK government’s discussions about Brexit are illegitimate. They see their real powerbase as elsewhere: in Dublin’s Dail Eireann, where Sinn Fein is the third largest party, and the chancelleries of Europe.

“That’s where most of the negotiation will actually happen,” says Molloy. “The EU27 will make the decisions. They won’t be made in Westminster, because the British have already set out what they’re doing: they’re leaving.”

But with seven MPs already lobbying ministers and a united Ireland unlikely to happen in the immediate future, Sinn Fein itself won’t be disappearing anytime soon.

Patrick Maguire writes about politics and is the 2016 winner of the Anthony Howard Award.

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