It was Friday afternoon I ended up in emergency. Taken straight from Triage through to be treated I finally admitted that perhaps, perhaps I was back in the throes of a relapse. You don’t look sick enough to have an eating disorder. Nothing wrong. My head was screaming. I was asked how I was feeling; my instantaneous answer, dictated by my eating disorder brain was “fine” before I backtracked to explain how I was really feeling.
Sick. Dizzy. Weak. Tired. Fat. Pathetic – especially for ending up back here again. Stupid. Heart palpitations. Anxious. Scared.
I have EDNOS – a not otherwise specified eating disorder. I don’t look anorexic, but I behave like I have anorexia nervosa much of the time. I’m not bulimic enough to have full blown bulimia nervosa. Having gone up & down the spectrum of eating disorders thoroughly over the last few years, it is EDNOS that has come closest to killing me several times over. The most common cause of death from an eating disorder is cardiac issues; often striking quickly & unexpectedly. Indeed a great proportion of those I know who have died from eating disorders have died either from suicide or have simply gone to sleep & not woken up. These people are not stupid. Indeed those I know who have suffered the most are the ones who are the most brilliant, the most intelligent, the top of their grade, perfectionists, hard working & have been swallowed whole by this demon of perfectionism & darkness.
There is nothing glamorous about having an eating disorder. There is nothing nice or pretty about falling apart both physically & mentally. There’s nothing glamorous about failing uni because going to class clashed with your completely deranged sleeping patterns & you were too overwhelmed by people eating; muesli bar wrappers crunching at a million decibels, people taking rapid bites between classes during conversations, people throwing down a full-strength sugared drink without thinking about it. Or not being able to work. Or sleep. Or eat like “anyone else”.
An eating disorder is a mental illness. A high media awareness, particularly of high-profile cases has done eating disorders both favours & a huge disservice. Anorexia is more aesthetically shocking than any other eating disorder, but isn’t the most common eating disorder. It’s estimated that ¼ of the population will have an eating disorder at some point in their lives. Following on from that; those with anorexia nervosa are 32 times more likely to suicide than their healthy peers. Eating disorders have a 20% mortality rate. 1 in 5. That is astronomical. Think about it; you, your best friend, your mother, your brother & another close friend. If you all had an eating disorder, one of you wouldn’t make a 10 year follow up because of the eating disorder.
Nationwide treatment for eating disorders is appalling. Services are limited at best & life threatening at worst. At 19 I had to move from Canberra to Sydney to access treatment because the level of care simply wasn’t available to me. When I moved here 3 years ago, I was privileged to access one of the then-existing four public state-wide beds. I was in hospital for four consecutive months after an agonizing 3 week wait where my life was literally hanging in the balance. Since 2009, although a national task force on eating disorders has been created, the state-wide beds have dropped to two.
Two beds. Only for the most acutely ill in the state. There is a state-wide public outpatients program also. Which is open for one half a day per week. There’s a day patient program, running four days per week – but it has an extensive waiting list attached to it. To even be assessed at the outpatients program, there is a wait of several months.
Simply, this is not good enough.Eating disorders have the highest mortality rate of any mental illness – a double whammy of both death by one’s own hand & the many complex physical complications.
We need to raise the profile of the sad state of affairs for eating disorder treatment in NSW.
Please put your name on the petition & help us let the NSW Government that eating disorders are serious illnesses and need to be treated as seriously.
Currently there is a petition which you can sign here.
The media has done a wonderful job of raising the profile of eating disorders. Now it’s time for those of us with the condition to be able to access care, without having to fight both the system & our illness.
Ella is a 20-something living in Sydney. Healthcare professional by day, student by night, she passionately advocates to raise the profile of eating disorders.







Comments
32 Comments so far
Ella, you are an inspiration
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As a professional working in the ed field, many thanks for highlighting the ongoing struggles for much-needed funding & support. You’re right about the media’s very mixed messages, often glamourising thinness, thus making the majority of ed sufferers (those with bulimia, binge eating disorder or ednos) feel that they need to be thin to be “seen” & their disorder recognised for the seriousness it is.
Bloggers, also please please bear in mind that “numbers” (such as a low weight) can be really unhelpful for others to read about & for some can strengthen their eating disorder through comparing (i’m not that thin so am not that sick etc). Everyone deserves support & a chance at effective therapy.
Keep up the fight for a life well lived…..
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One of the biggest misconceptions about eating disorders is that the number on the scale somehow quantifies how “sick” a person is and sadly, some of the above comments, with their focus on a certain number of kilograms, just reinforces this. I also have suffered from EDNOS for many years. I eating that diagnosis as opposed to anorexia because I didn’t meet that magical BMI…. I also nearly died several times. Many so-called “normal” weighted people have died from an eating disorder, whatever label you want to put on it. Don’t assume that just because a person isn’t skeletal that they aren’t living in enormous pain and could drop dead at any minute. The media glamorizes these skeletal examples of eating disorders. Thank you Ella for helping to open peoples eyes just a bit…
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No, i don’t think that’s what the comments with the numbers are saying at all… they are saying that THAT is the level these people had to get too to get help they desperately needed, or sadly, they passed away. It is stating that the WORLD has the problem with recognising that these people are ill, deathly ill sometimes, before the medical profession and other government bodies who need to put aside resources for this, will notice them
It is just so terribly sad.
Health and happiness to all those who are in need of it.
xo
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Qld has 10 beds. I know someone desperately waiting for one as no other psychiatric facilities will take anorexics. Much needed article I hope you can continue to spread your message. All the best
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Encourage your friend to contact EDOS: 07 3114 0809 they will advocate and support an admission to a medical ward if necessary or to other support in the mean time.
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Thank you Ella. This is an issue also close to my heart (literally!)
My best friend is now a psych registrar at a major metro hospital. She is appalled that when i was rushed to emergency in an ambulance at the age of 20, new years eve no less, weighing no more than half of what i could have and still been considered ‘heathy’, how that hospital could have let me go that day. I recall being questioned very rudely as to why i was that skinny, to which my response was pointedly ‘because i dont eat, clearly’ to which their response was NOT ‘well your electrolytes are so f-ed up you’re at immediate risk of a heart attack’ (which they no doubt were) but simply ‘well i guess, if you say you’ll follow this up with a GP we’ll let you go’… To which i wanted to WALK the 30 mins home… My parents were ropeale about this too for a long time though living in a different state… It really needs and deserves more
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I’ve been in & out of emergency 5 times in the last 16 days – often discharged in the early hours of this morning & walking home. No admission because none of my bloods are consistently bad enough (because I’ve been in emergency for electrolyte replacement so much) – despite the risk of refeeding syndrome. The only team that will take me is the eating disorders team & those two beds are full.
I’ve just taken out private health insurance & have 7.5 weeks until I can access mh treatment through it.
I couldn’t believe the nurses though. I’ve had some nurses who have been great, others who’ve been so offensive “gee you don’t look like you’ve got an eating disorder very badly”, “what a stupid illness”, “why don’t you just stop this”, etc. I don’t want this & so often it seems like people forget it’s an illness & not a diet gone wrong or a lifestyle choice.
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I am sorry for your experiences with the nurses, they resemble the attitudes of everyday people who have not been educated to ‘know better’… you and I (and others who have/are suffering) understand that it is not something that you can ‘just stop’… I’d LOVE to have stopped worrying about every single thing at the peaks (and there have been 3-4 ‘peaks’ that really should be called ‘lows’) of my illness.I would love to have just eaten that damn cheeseburger I got told i should be eating a MILLION TIMES… I would LOVE to have not had the obnoxious ‘roll of eyes’ from anyone i dared eat a salad in front of… What they didn’t realise is that even THAT was putting me out of my comfort zone… it’s so sad, the misunderstanding.
Further, I would have given anything to feel able to stop my family and loved ones from worrying about whether i would come home from work that day, or suffer a heart attack walking up a flight of stairs. To not worry that I wouldn’t wake up. To not worry about burying their daughter in what should have been the peak of her life thus far… (21)
Whilst thankfully I am in recovery now thanks to meeting my soulmate and a stronger-than-the-desire-to-not-quite-recover desire-for-a-better-life and a strong support system behind me, i truly understand what it takes to get to the point of ‘asking for help’ or even just ‘accepting help’ so attitudes like that are downright disgusting.
Granted, I may be on anxiolytic medication for the rest of my life, but i am better for it and understand now that i relapse TOTALLY into my depressed,anxious and anorexic state if i come off them. I’ve met a wonderful pscychologist just this year who was able to help me sort some of my issues out. Countless times I have wondered if there ever truly will be an end to this, or if it will always be more of a ‘remission’ but I now strongly believe that the more you are aware of what is going on for you, and that you know there’s a ‘better life’ than the one you’re leading, the better off your chances of staying ‘well’.
You can do it, Ella (and others on this page who may be suffering in silence), and you can do it for yourself, because you deserve to be happy… TRULY happy…
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This July marks my 21st Anniversary of living with an eating disorder. I’m 28 years old. It started as a way to gain control over something in my life when my parents separated. With constant taunts about my weight from my step-father, it became about control and body image.
Sometimes I live with an eating disorder, other times I survive with an eating disorder. The line is often so thin between the two.
I have been lucky enough to be surrounded by an amazing support network for years. This isn’t to say I haven’t relapsed in years, because I have. But those around me have learnt to observe without making me feel watched. They are conscious of (as am I now) triggers that can have devastating consequences. And I don’t want to take another trip down the rabbit hole. I’ve seen enough. I’ve hurt enough people that love me. I’ve hurt myself enough.
I have one beautiful daughter and another beautiful daughter on the way. It is up to me to model healthy eating habits. To learn to have a healthy relationship with food. And I’m learning. I’m living. And I’m loving cooking wonderful meals for my family and sitting down and eating them with them too.
Please, seek help if you think there is even the slightest chance you have a problem. Because there is a big difference between living and surviving.
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Well done u!!! I, too have a gorgeous child who i must model healthy eating habits for. It is my job to ensure this never happens to them. Thank your lucky stars that we both could even have healthy children after suffering from this horrible disease! Good luck xx
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I am going to put this petition on fightingthinspo. After two years blogging pro recovery and ed awareness in the tumblr community I am terrified by the masses of girls not just here but around the world falling prey to EDS. This is truly a crisis and our current hospital system is just not equipped to cope with the fall out.
I hope everyone signs and please please please watch your girls when they are online because the internet is rife with ana and thinspo and daughters and sons are being poisoned by it right under our noses.
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After watching a gorgeous, vivacious, happy girl grow up and then in high school hear some boys call her fat and watch her bewilderment at the teasing (she was an athlete with an amazing bod) her self esteem plummet dropped out of sport, stopped eating and when she had to vomit she sadly passed away at 27kg age 25. Misplaced remarks that those guys wouldn’t even remember making started this gorgeous girl on a mental journey that took 8 years to kill her. She went interstate for help in private clinics, My workmates hubby was a cop that was called to her parents place after she passed in her sleep, she came to work telling me how upset her husband was after being called to this and couldn’t understand how this could happen to an obviously beautiful girl who was tiny. Especially after her mum showed him a picture of her when she was 16. I can still see her beautiful smile with dimples and thick brown hair that we all envied, eye lashes that didn’t need mascara piercing blue eyes and the sound of her laugh that made us all happy. I can also still hear 16 year old her asking why would they pick on me this way? I thought we were all friends. RIP B xo
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That just made me cry.
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Devastated Mum – I am surprised by your comments regarding services in Brisbane. My daughter, currently in Year 12, has had eating disorders since Year 8. She got down to 36 kgs through not eating and obsessive exercise. Her school (a state high school) was able to refer her to KIMS with intervention from me. She then went from being anorexic to binge eating (NOT bulimic), literally stuffing herself stupid with food – anything – I remember finding packets of custard powder in her room that she would literally eat straight from the packet. Guilt would then make her restrict until she got so hungry that she would binge – to the point of throwing up. She was admitted to RBH where there were definitely more than five beds and certainly more than 5 anorexics (couldn’t miss them as they had drips attached). I won’t say that it has been an easy road but after 4 years we are starting to see the light at the end of the tunnel and she is finally able to sit and eat a meal and enjoy her food without feeling guilty. This was a combination of KIMS, the RBH and a lot of hard work from me (but they had to teach me HOW to talk to her). These are all public services. I cannot fault the care that she has received.
Getting over an eating disorder is difficult and very much a long-term proposition – there are no quick fixes, I remember 2 years wondering if there would ever be an end to it, when it seemed that it was a step forward and 5 steps back, wondering when she would stop abusing me, wondering how I could keep on going despite the abuse, the emotionally draining conversations, the sight of bones sticking out, etc … eventually you get there.
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I am too. My daughter works casually at RBH and has recently had to special someone with eating disorders.
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I think her comments were about services in Canberra and NSW, not Brisbane.
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In WA it’s even worse. As far as I know, there are actually no public inpatient eating disorder programs for adults in Perth. PMH, the childrens hospital, have an inpatient program. But that’s it in the public system in terms of specialist ED hospital programs. If you have private health insurance, Hollywood Clinic has an eating disorders program, but people shouldn’t HAVE to take out private health insurance just to get adequate treatment.
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I’m currently on the wait list for the 2 beds. On Friday I took out private health insurance to get care. I have 7.5 weeks to wait until it kicks in & I can use it. The game plan at the moment is stay alive outside of hospital until I either get a public bed or my private health insurance kicks in.
2 months is a really long time to wait.
<3
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Oh Ella, please hold on to the fact that you are worth living and you have a lot worth living for that you might not be able to see right now. Hoping time flies just for you babe, hang in there.XxOo
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Can you get in to a bed in another state if you are informally living with someone? Maybe its worth a loan to get you into private a few weeks earlier? Happy to chat more, if you want
xx
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I’ve finally put an ED to the side, it’s not gone but it’s not at the front of my mind every single day. Not eating was an obsession, binges when I failed and the spiral continued for many years until a boy came along and I realized how sick my behavior was.
I’ve had friends near death, there’s help for adolescents however once you hit 18 you need to be nearly dead before someone will hear the cry.
Hugs to all of those.
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I am so glad you’ve managed to find some peace <3
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Currently there are 5 ED dedicated public beds in Brisbane, to service the entire state. I am thankful every day that we had private health insurance to enable our daughter to spend months in a private hospital with a specialist ED program. When whe was diagnosed with this I was incredulous that there was hardly any help available, it is so well known and yet the government provides marginally more than nothing. My daughter isn’t out of the woods, & as a family living with this as an ongoing situation, it’s an extremely hard road. I hear about parents selling everything they have to send their sick daughters overseas for treatment. I wish hard for my daughter’s future health and I also dream about winning lotto, so that I can sponsor a public bed in a private facility.
Hope you find helath & happiness soon, Ella.
xx
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Sending so much love to your daughter & family. Keep focusing on healing <3
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It is tough, but although those five adult beds are in a specialist unit, you can have a public admission in other hospitals and there is a specialist team that comes to visit weekly (if the hospital requests) or if the hospital is remote does a teleconference and works with the staff to provide specialised care. If the admission in unsuccessful, then that patient can wait for a bed in the specialist unit (while remaining in hospital elsewhere waiting for a transfer) and then stay in the RBWH for as long as necessary. So in many ways I think there are supports out there to assist, obviously more would be better…but its a good start. I think without the private system though, the public system would be completely over extended in this area.
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Wow! I have survived anorexia, getting down to just 35 kilos. The only reason I survived was medical intervention and a GP that took an interest in my illness. I was lucky. My parents, as amazing as they were, could not have helped me, no matter how much love and understanding they gave me.
I now have a 7 year old daughter and two younger sons and I am hyper sensitive about my daughter in particular developing an eating disorder. It scares me that we don’t have the support in the health care community we so badly need.
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It’s quite hard to spot someone battling an eating disorder. As you say, Ella, anorexia nervosa is just one of several types of eating disorder, but the most obvious one to outsiders. Many other people keep theirs secret. I’ve been in State-funded CBT for years, and while progress is slow, I am much healthier, physically and mentally. From what you say, living in Qld might have saved my life, as I was able to get the help I needed at the critical time. If I’d had to wait weeks or months for an appointment, I probably wouldn’t have made it.
Good luck with your recovery.
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Kate – I am so glad you are getting the treatment. I hope it is helping you. I know recovery is possible; I know I’m a long way from recovery, but I know it can be done. Please don’t lose hope xx
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Thank u so much. I found out two weeks ago one of my dearest friends died from anorexia, aged 36, weighing just 27kg. I am profoundly affected by the fact that the S.A. public health/mental health systems essentially put my beautiful friend in the too hard basket & did nothing to try & prevent this. I am coming to terms w my feelings atm, but I know they will definitely garner me to action in some way. I’m so pleased you are doing this.
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I am so sorry to hear about the loss of your friend. <3
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As a mental health professional I am appalled by the lack of support available to those suffering. I never realised it was this bad. I’m sad.
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