The Butterfly Foundation Has Always Been There for Me, I Don’t Know What I’ll Do Without it

Features. Posted 1 year ago

Laura Nagy

Petra4
Image: from Petra Collins’ 24 Hour Psycho series, exploring mental illness. Image source.

Last week, The Butterfly Foundation announced that it faces having its funding cut within the year. I was so angry my hands made fists by my sides. I am still so angry. To sufferers of a mental illness for which there is already so little treatment easily – and affordably – available, the threat that the only national support service that specialises in our care is facing cuts is devastating.

Sometimes, in the middle of the night – in the years when I was at my sickest – I would sit in agony, digging my nails into the flesh of my palms, just trying to breathe through a purging episode; cursing the Butterfly Foundation’s help line for not being available throughout the night. Nights when I would run around my block in the freezing cold until I felt faint, or smoked ten cigarettes in a row just to curb my appetite, or spent hours vomiting in the shower; the running water masking the sound from my housemates.

If the Butterfly Foundation had the funds to man the phones at night, there would have been no reason to go through these moments alone, with nothing but my own thoughts. I could have hung on the line in complete anonymity while I talked through my self-hate, or waited out the impulse to purge, or ate whatever meal I was currently afraid of; or simply sat in silence, just knowing that someone who understood and validated what I was going through was in some way there. But, Butterfly does not have the funding to offer a 24-hour phone service. And so, I abused myself, alone.

Once you’ve used up your Mental Health Plan for the year (a ludicrous notion that so many long-term and destructive mental illnesses can be cured within 10 sessions) – I, along with many other sufferers – simply cannot afford the regular therapy required to successfully combat an eating disorder. And so, once a month, a support group of people with eating disorders meet for an hour and a half in a fluorescent-lit space in Bondi Junction. The Butterfly Foundation facilitates these meetings.

Sometimes I watch the new girls (we are predominantly female – though it is not unusual for a male sufferer to turn up) entering the room, and I want to hug them. I know that just showing up to your first group is fucking hard. The first time, I was so overwhelmed, I almost didn’t walk through the door. I was sure the others would immediately see me as some kind of fraud. Not thin enough to be there. But, I did enter, and immediately saw that we are such a mix of people. Young and old. Some are dangerously underweight and some are obese and most, like me, sit in a ‘healthy’ weight range, curiously disguising our illness behind the cloak of presenting ‘normally’. We come from all walks of life. Psychology students, mothers, nurses, European backpackers. If the group has taught me one thing, it’s that there is no ‘face’ of an eating disorder. You don’t have to be an adolescent, or a model, or a dancer. All you need is a body and a mind.

Recovering from an eating disorder is not as simple as deciding to eat, or deciding to stop purging. It’s hard to even know where to begin. If only there was some kind of 12-step program, in which someone could take our addiction and obsessions away from us. But you can’t just take food away. Nor can you take away our bodies.

At the beginning of each session, our wonderful therapist from the Butterfly Foundation establishes the rules. We will not repeat anyone’s story or name. We are recovery-focussed. We avoid triggering language – particularly numbers. So any talk of weight or calories is out. Inside the room, the rules are respected, each one of us feeling safe that the whole group knows – via our mutual experience – how to avoid triggering each other. But just outside the room awaits that same world – the world where dieting, and fitness, and thinness is revered. The world where we are congratulated on our dangerous weight loss, and our illnesses are grossly misunderstood. Outside the room the rules are thrown out and we have to survive on our own.

We talk about ways to recognise what is an eating disordered thought and what is a healthy thought. We strategise minimising our stress in what might seem like the most ordinary of situations to a non-sufferer – like sitting down for lunch with our families, or turning up for a party even though we’ve put on weight, or responding to a colleague who enthusiastically shares their weight-loss victories, or even just venturing out to the grocery store. We talk about fostering coping mechanisms to distract ourselves when we feel the need to purge. We talk about how we can educate our loved ones on how best to address our disorders. Mostly, we talk about treatment.

In a room of people who are actively, desperately seeking to help themselves, it’s sad – and incredibly frustrating – how often we end up spending almost entire sessions discussing our shared struggle of simply trying to access specialised care. A group of anorexics and bulimics and compulsive over-eaters swapping business cards of therapists they’ve heard might be affordable – even suggesting self-help books they’ve found useful – in lieu of expensive treatment. Like many people in my group, I approached recovery with the vulnerable naivety that all I needed to do was make that first bold step into my doctor’s office, and recovery would suddenly become inevitable. This is simply not the case. There are many specialised programs that turn sufferers away if they cannot afford the fees; aren’t ‘sick enough’; or are otherwise unable to pull out of work or school to commit to full-time treatment and therefore don’t meet the criteria for their result targets. While I don’t judge or blame these institutions – who have their own funding and investors to worry about – I am incredibly grateful for The Butterfly Foundation for always welcoming me. I just rock up once a month with my $15 – and even if I don’t have it, they never turn me away.

I need The Butterfly Foundation, because I recognise that I require specialised care. There is simply no comparison to be made between a generic therapist, and one specialising in eating disorders. They are universes apart.

I need The Butterfly Foundation, because I care so deeply about every single person that comes to my group. At the end of each session I am left with such concern in my heart for each and every member.

I need The Butterfly Foundation because their follow-up is impeccable, and heartwarming, and necessary. Each and every phone call and email is followed through swiftly and comprehensively and, most importantly, compassionately.

I need the Butterfly Foundation because eating disorders are marked 12th among the leading causes for hospitalisation due to mental health – and yet, there are currently only 37 adult hospital beds in the entire country available to people with eating disorders. Only enough for those who are on the brink of organ failure.

I need The Butterfly Foundation because they are trying to overhaul this nonsense system that forces us to get sicker before we can get better.

I need The Butterfly Foundation because there are no quick fixes for eating disorders. They are not lifestyle choices. These are long, drawn-out, slow-burning diseases, that fester in the shadows of secrecy from which they are born. A false friend that whispers to you in the dark, telling you that without it, you are nothing but that same pathetic, fat, ugly, worthless thing you were when this all began. An eating disorder latches on to your identity and drains away each part of you, until you are almost nothing but the eating disorder itself; a machine that exists to restrict and purge and punish.

I need the Butterfly Foundation because eating disorders have the highest mortality rate of any mental illness, with those affected 12 times more likely to suffer a premature death – either from physical complications as starving, purging, and stuffing erodes every cell, tissue, and organ in their body – or from suicide.

I need The Butterfly Foundation because it fights for us, every day – through campaigning to advance understanding of the complexities of eating disorders; through government lobbying for appropriate funding for treatment and the many forms it must take; through the professional development of treatment professionals; for the vital work of their Research Institute.

I need The Butterfly Foundation for the younger me – for the teenage girl vomiting into Tupperware containers in her room so that her parents won’t be suspicious of her frequent use of the bathroom; for the young woman who silently slips out of the house while her boyfriend sleeps to binge in the solitude of a parking lot; for the professional who cannot focus on the career she has worked so hard to carve out for herself, because every waking thought is obsessed with food and her body and all the ways it has failed her; for the sufferer who hides in silence for over ten years before finding the bravery and the hope to call the helpline – only to find it about to crumble at her feet.

If you or anyone you know suffers from an eating disorder, you can contact The Butterfly Foundation on their support line at 1800 33 4673 or email them here.

More reasons why we need to focus more on mental health support right now:

1) New Report Shows Why Mental Health Support for Teens is Vital

2) New Report Links Social Media Use With Depression, Highlights Need for Greater Awareness

3) Real Talk: Life With Depression

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