On resilience and sharing the struggle

We don’t talk about the messy reality of eating disorders – but we need to, writes Ed Miller

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For three years, Kate was that friend whose ever-changing hairstyles, intimidating fashion sense and record collection made me feel more adventurous than I actually was, simply by being in her company.

From my perspective, Kate knew how to handle life.

She crushed her university subjects, balanced a part-time paralegal job with the occasional modelling shoot, and had this permanent approachable-bordering-on-flirtatious smile.

It wasn’t until after I’d fallen in love with Kate that I learned she’d been suffering from an eating disorder since she was 15.

At first the subject was broached casually – dropped into conversation as an incidental and largely historical personal experience. It didn’t take long to work out that her experience was present tense.

It was little things – Kate would often play with her food or disappear after meals. She would always express preferences for the same places when we ate out, and when in company would try to make sure she ate less than others. Then one evening, it was wet outside and I made a surprise picnic to have on the living room floor. When Kate saw it she burst into tears. She didn’t want to eat the things I’d made, but didn’t want to tell me because of the effort I’d gone to.

It took a while before Kate was comfortable talking to me about her illness. She told me that if I knew what she lived through each day I would be disgusted and I would leave. She was worried that sharing her struggle would strip the romance from our relationship; that I would begin to see myself as a carer rather than as her partner.

At the time, I was a little worried too.

Eating disorders enjoy a very particular type of stigma. Refusing, gorging upon or purging nourishment is behaviour so contradictory to primal instinct that it can be really hard to understand and accept from a loved one without blame and frustration. Sufferers are well aware of this – it makes them feel a deeper sense of brokenness, a more acute sense of shame.

Partners, parents and friends of people with eating disorders are collateral to the silencing taboo that surrounds mental illness. It is a dangerous and isolating silence. When Kate eventually did open up to me, far from driving me away it made our current relationship possible. It made it easier for me to understand the suffering of someone I loved, and easier for her to accept that she was worthy of being loved.

15 per cent of people will experience an eating disorder at some stage during their life, and 84 per cent of people report knowing at least one person who is currently suffering. They carry the highest fatality rate of any mental illness. Despite this, eating disorders rarely receive the kind of attention that depression and anxiety receive. There’s no need for a macabre comparison between the prevalence and seriousness of different mental illnesses, but it is disturbing that eating disorders aren’t mentioned on the homepage or in the drop down menus of websites like Lifeline or Beyond Blue, when they claim so many lives.

It wasn’t until July this year that anorexia was recognised as an official cause of death by the NSW coroner. Death certificates usually list suicide, or organ failure – the deadly symptoms, but not the cause.

The absence of eating disorders from mainstream discussions of mental illness is something that acutely affects those who have one. The lack of general awareness builds barriers to communication for sufferers who feel like the reality of their daily life is far worse than the perception people are likely to have.

Deb is a mother of two who has been struggling with an eating disorder for almost 23 years. She has watched her ex-husband, siblings and friends drift away from her because of the difficulties she’s faced in reaching out to them. “How do you tell someone that you can’t meet for coffee because of the calories? That dinner is out of the question? That you weigh yourself on five different sets of scales? Disordered behaviours are so personal – and by that I mean they can be such violent acts against oneself – that it’s impossible to share with anyone. I have never been able to tell anyone about my disease in its entirety.”

Deb’s experience is hardly anomalous. Annabel is a 24-year-old student with a blossoming singing career. She’s shy, but there’s a latent energy in her incredibly expressive face. I can’t help but think, given the conversation we’re having, that some of that shyness is learned. “I have always had a lot of support from friends and family, but they often avoid talking directly about my eating disorder and the associated behaviours,” she tells me. “People get uncomfortable talking about it.”

I ask her how she deals with their discomfort. “I absolutely keep things from people. I find it a lot easier to talk about food restriction than I do purging or self-harm… The worst thing is how much I struggle to communicate with people when I’m actually in my eating disorder. I get completely trapped, the disorder doesn’t want me to communicate in order for it to thrive.”

The personification of eating disorders is something I’ve encountered more than once. It’s common for sufferers to refer to the disorders’ “wants” or “needs” as separate and distinct from their own and to talk about an internal psychological fight between the self and the illness. There are times when Kate will talk with tenderness and apprehension about wanting nothing more than recovery, support, and to move on with her life unencumbered by her physically and emotionally devastating illness. And there are times when that Kate seems unreachable – when her illness has an almost dissociative grip on her, and the stress and tension she lives with is relieved only through disordered or self-harming behaviour.

***

There are a number of dedicated sites for information about eating disorders, which offer very similar versions of the same fact sheet for concerned friends and family. Lots of dos and don’ts that reduce intimate relationships to a bizarre checklist. Don’t make meal times a battle. Do cook normal food. How am I meant to do both? Don’t compliment physical appearance. Do encourage social interaction. What if she doesn’t want to go out because of how she feels abouther physical appearance?

I remember searching online for information that would complete the picture offered by these eating disorder cheat sheets and my conversations with Kate – vain attempts to make a messy and complicated mental illness neat and solvable. I naively armed myself with the type of pop-psychology you might find within the pages of GQ or Cleo. It was Kate who had to practice being gentle, patient and understanding in those moments.

Part of the problem was the stereotype I’d grown up with of what an eating disorder sufferer looks like: a teenage girl who’s looked at too many glossy centre-folds of Taylor Swift and is now refusing food out of hysterical vanity or an irrepressible need for control during the confusion of adolescence.

There are different versions of this unhelpful stereotype. Deb tells me when her brother found out about her disorder that he suggested she come and stay with him so they could eat burgers together, and that her mother in law suggested she had a “food allergy.” Annabel distinctly remembers one of her close friends telling her to stop being silly.

For my part it was the belief that the cure for shame and insecurity was determined and persistent love and empathy. I was well-meaning, but looking back, I can’t help but feel terribly conceited – as though my capacity for love and empathy is any greater than the countless parents, siblings and partners of people who have lost someone they cared about to an eating disorder.

***

The first time I met Kate’s psychiatrist I asked him, “Where do eating disorders come from?”

“No one really knows,” he said.

Somewhere between 30 to 60 per cent of people who seek treatment are diagnosed as suffering from EDNOS – an eating disorder not otherwise specified. People with EDNOS display a variety or fluctuating range of disordered symptoms and behaviours. The medical profession doesn’t know how else to refer to them, and the Diagnostic and Statistical Manual of Mental Disorders changes its classifications of eating disorders in almost
every edition.

Doctors that don’t specialise in the treatment of eating disorders are sometimes painfully unaware of how to interact with sufferers. I’ve lost count of the number of times Kate has come home from a simple check-up with a GP, terribly upset after a new doctor expressed surprise at her diagnoses and treatment history because “you don’t look that skinny”. It’s not that they are uncaring or unprofessional – just lacking knowledge about the specific impact those kinds of words can have on the self-esteem of someone battling with negative body image.

It’s not unusual for sufferers of eating disorders to be passed from one psychiatrist to another after a number of months of not making progress, only to be passed to another. Annabel has seen four psychologists, two psychiatrists, two trauma counsellors and three dieticians. Emma, a 32-year-old grad student studying health law, has seen five psychiatrists and at least seven different dieticians. Deb has lost count.

I ask Emma, if she’s found treatment helpful – her answer is, not really. “Rather than a sense that they know how to treat eating disorders and have a clear plan following diagnosis, I can’t help but feel that therapists themselves are unclear as to what is the best course of action. It seems like trial and error – there’s no consistency.”

Deb agrees. “Many therapists don’t specialise in eating disorders and therefore can’t offer any insight. Others tend to treat the physical symptoms and not the mind. There is also no pharmacological treatment for eating disorders. Drugs like Seroquel and Zyprexa are sometimes prescribed, but they are really anti-anxiety, anti-psychotic drugs developed for other conditions.”

Many sufferers I’ve talked to find the most effective form of treatment is in-patient care at a clinic for eating disorders. Here, meals are planned and prepared, post-meal activity is monitored, and counselling provided. These clinics organise visits to Boost Juice, or Subway, to try to push patients towards comfort with more typical interactions with food.

But there are only five such clinics available under public healthcare in NSW, with as few as seven beds per clinic. The waiting list can be months long, and priority is often given to those who desperately need to start eating. This triage excludes sufferers with binge eating, bulimia or EDNOS – they are commonly within a healthy weight range but die suddenly from other health complications, for instance when severe electrolyte imbalances cause cardiac arrest. Often, the desperation caused by an acute eating disorder isn’t best determined by someone’s weight.

There’s no question that mental health care should be better resourced in Australia. For eating disorders this would provide more in-patient beds in public clinics, greater out-patient support through programs that are flexible enough to support someone studying or working full time and greater education and awareness within the medical profession about interaction with sufferers.

Many eating disorder programs in the US have enjoyed success by offering much longer transitions between in-patient and outpatient care, that gradually reintroduce people to normal life. These programs come at a cost, but so do cycles of treatment that focus on hospitalisation at crisis points rather than long-term recovery. The biggest cost of all is the human cost – the premature deaths of 20 per cent of sufferers, and the difficult lives of the 20 per cent who never fully recover.

***

“We call them the 26 per cent.”

This is what a leading specialist in the treatment of eating disorders tells me about the proportion of recoveries that are attributable directly to the support of a close friend, relative or partner.

Those friends, relatives and partners aren’t co-dependent; they don’t have hero complexes or an inflated sense of self-importance. Neither are they weak for enduring the cocktail of frustration, and hope, and sadness, and joy that often compose their relationships. They’re normal people, and you probably know one.

The support available to sufferers of eating disorders, and the people involved in their lives, depends greatly upon the willingness of others to be uncomfortable. To be confronted by the messiness, irrationality, and pain that those disorders inflict and be okay with not having, or offering answers. To listen, only for the sake of listening, to the experiences of those for whom sharing is itself an act of rebellion against their illness.

For eight years, Kate’s eating disorder has been a daily feature of her life. In the last three months, however, following a period of determined treatment, I can count the number of days that have gone badly on just my fingers.

Life comes with no guarantees. Given the long history of her illness, Kate’s recovery is very tentative and ongoing. It’s hard to fathom the resilience that drives her daily to resist the screaming voices of her illness. There are times its hard to watch.

But there are also times when the approachable smile I fell in love with betrays a newfound hopefulness. Times when there’s a timbre of confidence and authenticity in her laugh that wasn’t always there. And those times make me hopeful, too.

Image: Alex, via Flickr.

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