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anorexia 380x557 This is the mental illness most likely to kill you.

Anorexia

 

 

 

 

 

by KATE LEAVER

I’m not a doctor; my only qualification is personal experience. When I was fifteen, I was diagnosed with anorexia. You may think it’s painful for me to recount my experience, but it’s not. It’s too important, and we have to talk about it.

There are things you need to know.

Anorexia is not a diet. It’s not a fad. It’s not a choice. It’s a mental illness, and it’s a gradual form of suicide. I used to wonder whether it was schizophrenia’s second-cousin-once-removed, because the voices in your head are so loud they drown out all common sense. The desire to self-destruct is all-consuming; the less you eat, the stronger that urge becomes. When a human being is starving and malnourished, they become fixated on food – which is a morbid unfairness for someone whose nemesis is food. At first the body fights to hold onto what fat it has, then it goes into survival mode. Organs begin to shut down, you’re always freezing cold, and you’re alone in your mission to take up the smallest space in the world you can.

The most important thing you can know about eating disorders, is that it’s not about weight loss. It’s not even strictly about the body. It’s about the mind.

When I was sick, I collapsed often. I lost my hearing for hours at a time, sometimes days. I blacked out on the stairs once, and hit my head. I didn’t have a period for a year. I was exhausted, brittle, cold, and so far past hunger I couldn’t remember what it felt like. But the worst symptoms were more insidious – I lied to my family and friends about whether I’d eaten, I tricked them into believing I was OK, I stole laxatives from the chemist, I isolated myself socially, and my own reflection in the mirror was my kryptonite.

Ella Graham 380x284 This is the mental illness most likely to kill you.

Ella Graham, who does not yet qualify for a bed

The only way I recovered was to flip the strength and determination I used maintain my eating disorder against itself. Starvation takes enormous discipline, so you have to find a way to redirect that energy to recovery. It’s so difficult, and I cannot imagine doing it without the support of mental health professionals.

In NSW there are just two public hospital beds allocated for adults with eating disorders. Those two beds are located in the psychiatric ward at the Royal Prince Albert Hospital, and the public outpatient facility is open just four hours a week.

Ella Graham was told she would need to wait until next year for a bed because the other 10 or so people on the eating disorders program list were equally or more unwell than her. She said she was told “you’re not in heart failure yet, so we can’t admit you.”

This sounds woefully insensitive, but what is a hospital to do when they only have two beds to offer? Prioritizing the most extreme cases is the only way they know to operate. It’s absurd and unacceptable, that both psychiatric nurses and young women like Ella are in this position.

Do you realise how much strength, and how much bravery it takes to ask for help? And how devastating it is, that the public health system cannot provide support. Eating disorders require specialized, urgent care – but to make that a priority for politicians, we need to adjust the public perception of the illness.

Anorexia Nervosa has a death rate of approximately 20%. That’s ONE. IN. FIVE. Which makes it one of the deadliest mental illnesses. Armed with this fact alone, I’m bewildered by the lack of urgency in our public health system to care for sufferers.

I cannot fathom that just two men or women in NSW – just 15 in Victoria, 5 in Brisbane – are welcome in public hospitals. And even then, there is no specialized care. The unfairness of it makes me want to weep.

I was lucky – and I use that word uncomfortably – that I was able to receive in-patient care in a private facility. The unwavering, infinite support my darling mother gave me, with the help of a vigilant childhood GP and a string of psychologists helped me recover. Others are not so lucky.

The revered eating disorders specialist I visited reminded me of Jaba the Hutt (pardon the visual, pop-culture insults is one of my many coping mechanisms). She was menacing, tactless, hard-faced and mean. I can only assume it was a strategy to force patients into recovery just to spite her. She popped me on the scales without clothes and gruffly bundled me off to a private eating disorders clinic in Sydney, where I languished for 5 weeks. The head nurse in the eating disorders ward used to be a guard in a maximum security women’s prison – that’s the level of discipline it takes to tame an eating disorder.

kate This is the mental illness most likely to kill you.

Kate

When one of my dearest friends became anorexic in our final year of school, I realised all over again how often eating disorders strike strong, intelligent women. Eating disorders are so often mistaken for extreme vanity, and that’s what troubles me the most. Older members of my own family praised and dismissed me in turn for “being vain and looking after your waistline,” which is an archaic perspective from a generation still in fear of mental illness.

I suspect it’s the very reason we haven’t demanded more and more beds, an integrated continuum of care, residential treatment, and better funding. Until it’s broadly recognised as one of the deadliest mental illnesses, there isn’t sufficient urgency to address the failure of our public health system to deal with eating disorders. We need to change that, so men and women like Ella Graham can receive the care they need.

For support, help and further information please contact The Butterfly Foundation on 1800 ED HOPE (1800 33 4673) or visit their website at www.thebutterflyfoundation.org.au

You can also head over here to support the campaign to get the NSW Government to do more about eating disorders: www.fedupnswhealth.com

 Kate is a radio producer, writer and Goon Show enthusiast. You can find her website here, and follow her on Twitter at @Kateileaver.

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41 Comments so far

  1. Family member

    I have a family member who has/ is currently battling through an eating disorder. As a family of 5 (including her) looking after her, it has been an exhausting year and a half. This has included stints in a private hospital we were lucky enough to be able to afford, but the majority of care has been at home. I think it is hard for people who have not experienced an eating disorder first hand to understand the level of care required to work through it. The thing that really gets me is the relationship drawn between “skinny” and “anorexic” – the two words are used as synonyms, but are worlds apart. Anorexia is a serious mental disorder, that requires 1:1 care for extended periods of time, and needs to be treated as such. It is not a personal choice, it is not something that a person can snap out of, to get out of it is an extended battle.

    Having said that, I completely understand how people can fail to relate. Until I experienced it first hand, I had no idea what this illness involved. The level to which is infiltrates the brain, convinces them of what they need to do was unfathomable. How exactly this message can be spread I am not sure, however it needs to be done. People need to understand the difficulty of eating disorders, the damage they do to lives, and the amount of care needed to fix them.

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  2. Olivia Patrick

    A candlelight vigil will be held on Tuesday October 9th at 6:30pm outside Parliament House NSW in Macquarie St. If anybody has been touched by an eating disorder in any way, even if you haven’t had one yourself, please feel free to attend – and please let your friends and family know too.
    http://www.fedupnswhealth.com/eating-disorders/candlelight-vigil-of-hope-remembrance/

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  3. faithandmeow.wordpress.com

    I’ve been really heartened to see the FedUp NSW Health campaign. I wish we had one here in QLD too. We have 4 beds in QLD – but remember it’s a massive state.
    Getting a bed doesn’t guarantee the treatment will be useful. I’m one of the ‘lucky’ ones. I spent the better part of 15 years more in than out of our public ED unit. But the treatment has hurt as much as it’s helped – and I often think it’s helped me stay sick for longer. My psychiatrist actually describes it as ‘torture’. I’ve been restrained on my back by my wrists for weeks at a time, force fed via both nasogastric and TPN, had all my belongings confiscated, lost my dignity, felt like a caged animal with no rights and unworthy of the most basic human comforts. This is in the 21st Century in Queensland, Australia.
    Eating disorders are a mental illness. They are NOT ‘spoilt brat’ syndromes. They are NOT something we chose to have.
    I do think that the lack of appropriate, CARING and KIND treatment did further exacerbate my illness – it also re-traumatised me, bringing up childhood abuse and then rape traumas which has only made matters worse.
    Australia has a long way to go and we need our country to catch up to the rest of the world when it comes to treating these disorders. At last count 11 of my friends had died from eating disorders. Young women and men – dead. 20% die, that’s horrific. This is absolutely deadly serious. It’s also laughable to hear that eating disorders professionals visiting from other countries are shocked at how far behind Australia is in the field.
    if actual ED unit beds cannot be created – please create official protocols for ED patients to be accepted and kept in other departments – eg medical – something that sounds obvious, but is actually more often than not rejected by hospitals. We are the ping-pong ball game patients – nobody wants to risk taking us on.

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  4. Kim

    There are more than two public hospitals. They may not advertise it, but all hospitals will take ED patients and care for them until they can either get a bed in a treatment centre, mental health facility or are stable enough to be released. However it is very true that you almost have to have heart failure to be admitted. I watched my daughter get so sick and was frantic about no one taking enough serious interest to save her, until her heart was almost failing. Then we got admitted to a public hospital and there she stayed for 9 weeks.

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  5. Faz

    I had an eating disorder for two years. I was addicted to exercise too. I had no social life, because it meant eating and drinking in public. I fed on fruit and bland foods. I dropped three dress sizes and lost my period for two years too.
    I was moody, tired all the time and I was exercising too much and not replenishing my body.
    My eating disorder consumed me. I hated looking at my size 8 self in the mirror. I kept attacking myself. 24/7 I had a devil in me beating me up about food. I felt like death. I was also trapped with this devil overshadowing me.

    This was five years ago. I gained all the weight back that i lost. I still exercise often, but I have a healthy relationship with food now. I love eating! But those two years were my skinniest years but my darkest years, I would never want to go back

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  6. Guest for today

    I’m currently suffering from depression and finding it really hard to eat – let me stress I do NOT have anorexia – and one of the things that is very frustrating is that is many people want to comment positively on my weight loss! I can only imagine how much this sort of attitude must fuel the terrible voices that drive anorexia, rewarding ‘skinniness’ as a good thing… I realise there are many components to such a complex mental illness but I will never comment on anyone’s weight loss. Just in case.

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    • Anonymous

      oh yes… i’ve been there too… same situation….
      i hate that weight loss is something to be celebrated…. like sure maybe if you’re trying to lose weight to improve your health…

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    • Tash

      I’m so sorry you’re struggling with depression x

      But yes, I know what you’re saying. I struggled with anorexia then bulimia and all people wanted to do was tell me how fantastic I looked. I don’t know how they could look past the fact I was blue, shaking, my hair was falling out and my skin was horrible… but because I was skinny, apparently that was the only thing that mattered. It’s a sad world we live in.

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  7. Jan Whitton

    It’s beyond insane- my daughter has lived the greater part of three years in Westmead – still no better … I’m hearing you and it is medical manslaughter!
    Would you like to do an article on the children’s treatment? If the kids were thrown all resources the thought would be that by 18 they do not require a bed… My God this is criminal!! When someone has an infection do they wait for the patient to turn septic? No- someone in vt to turn to vf? No!!!

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    • Ella

      Jan, would you like to write a story for the fed up website? The email is on our contact page on http://www.fedupnswhealth.com

      I wish you & your daughter the best. x

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  8. Guest - because today I want to be.

    I used to work as a nurse in NSW and at my hospital (in Newcastle, not Sydney), we often had one patient with Anorexia Nervosa on my ward. They were treated for their life threatening metabolic imbalances, seen by dieticians, psych, social workers and pastoral carers. It was not a full treatment facility and these women (and one man) were not in full cardiac failure, they were mighty close. We monitored their eating, toileting, showering, often nursing them 1:1 for weeks at a time.

    What I’m trying to get at, if we could do that in “the sticks” of Newcastle, surely there is more than 2 beds available for people with eating disorders. Usually the condition on their admitting paperwork was “electrolyte imbalance or severe hypokalaemia” and then a little further down the page, the eating disorder is mentioned.

    They do have to be really sick, but if you are really life threateningly sick the system will care for you.

    I dont’ have a solution. I must admit I found looking after women with eating disorders much more mentally draining that looking after someone with end stage liver disease.

    WOW, sorry for such a long story. But I hope it means you take this article with a grain of salt, people who need help usually can get it, might have to really try, but help is out there.

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    • Ella

      Hi there,
      Firstly – I’m curious to know how long ago this was, because 10 years ago there were 12 public treatment program beds in NSW. Now there are 2.

      Secondly, we don’t feel someone SHOULD become life threateningly sick to receive treatment for a mental illness.

      I understand that eating disorders patients are extremely difficult to look after. It’s a frustrating illness. Even those of us with it don’t understand it properly. The reality is that an eating disorder is hard enough to fight, no one should have to fight the illness AND the system.

      and eating disorders have the highest mortality rate of any mental illness. So I don’t understand why there are 2 beds & no general psychiatric staff are trained in how to treat eating disorders unless they’ve worked in a specialist unit.

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  9. Kat

    It is so disheartening to hear nothing is changing. As a teenager, I spent days trying desperately to find any treatment for a friend – a beautiful, smart loving girl who was starving herself to death. I was not the only one – our circle rallied around a family who were exhausted emotionally and physically after monitoring her almost around the clock to make sure she didn’t sneak out to exercise. Although there is a little more support for adolescents, it is nowhere near adequate. She ended up in a hospital 3 hours from home which seemed to provide little more than lessons on how to hide her illness. Amazingly she found the strength to recover outside hospital but I will never forget the desperation I felt – my heart goes out to those living it now.

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  10. DesperateMums

    I read this story and I just wanted to share my past five days with someone. My 15 yr old daughter has a medical condition that causes chronic pain. Subsequently she also suffers with depression. Last Friday she self harmed after two attempts at hanging herself. I called the children’s hospital, was referred to the local mental health team who referred us back to the hospital. We arrived at the hospital, our daughter was given sleeping tablets to keep her asleep over the long weekend and sent home. Why …. there were no beds for her. We were sent home after our child stated clearly she was not safe and after we expressed feeling ill-equipt to manage her safely at home. Despite our vigilance and enforcing rules for safety at home, she has self harmed again and everyone is just completely exhausted. Our family (two mums and five kids) are in crisis, but does anyone care? The resounding answer is NO! We have since re-presented at the hospital and are currently refusing to leave (following telephone advice from the local mental health team and GP). I have submitted a complaint to the HCCC, the federal and state ministers for health, the minister for women’s and children, the minister for mental health, the CEO of the hospital and our local member. These complaints will probably do little to help our daughter but the system needs fixing – perhaps in the future for another child who is mentally unwell – be it with an eating disorder or some other mental health problem.

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    • Jen

      Sending you, your daughter and your family strength and love during this tough time. Thinking of you xx

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    • Sharlene

      I understand your frustration completely. When my daughter was 6 her auditory hallucinations began. When she started to hit her head against the toilet bowl in an attempt to get them out we went to emergancy. I had no other thoughts on what to do. Clearly, neither did the hospital – they offered her panadol!!!! Then sent us to a paediatrician who said she was making them up to avoid being in trouble. Funny thing was she hadn’t done anything wrong.

      Acupuncture, osteopathy and biomedical medicine in the form of expensive prescription only supplements that aren’t on PBS have stopped hallucinations. She is now 14 and sometimes still withdrawn and isolates herself but recently she stopped eating gluten and now her aches and pains have eased and is becoming more social.

      I wish you and your daughter all the best, it’s a scary road and but you’ll with both come out stronger and wiser.

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    • Izzy

      Can’t you put her on anti-depressants?

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      • Ella

        I, like many others with depression or other mental illness, wished that medication was the answer. Unfortunately for many it is not. Treating mental illness is more complicated than that.

        To the original poster – I am thinking of you & your daughter x

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      • DesperateMums

        She is on antidepressants … Clearly they are not working though.

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        • Nikki

          How frustrating for you! Do you have any other support for her and your family – e.g. a youth mental health support service? I’m not sure where you live but in Perth we have services specifically for those who self-harm or with suicidal behaviour. It might be worth a try.

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          • DesperateMums

            Update on Chloe … She has now been admitted to the children’s hospital. She is in a medical ward and I’m told there are only 8 mental health beds in the hospital and of course they are full. Now, the only reason she has been admitted is because we made so many complaints. In the end the local member contacted the Minister for mental health and he contacted the hospital directly. So … for the moment Chloe is safe. In terms of the bigger picture … Imagine a mother, perhaps a solo parent, a woman who may not speak English confidently, doesn’t understand the healthcare system and/or doesn’t have support in terms of family/friends …. What happens to her child who is mentally unwell? Scary, scary thought! We need better mental health services for our kids and we need them now! Thankyou to those of you who have responded with kind and supportive words – we are very grateful.

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            • Jen

              So very glad to hear Chloe has been admitted to the children’s hospital that’s great news xx

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  11. Dawn

    Still remember walking home from BYM with you and thinking what a vibrant, confident and lovely person you were! Now sitting here and reading your brilliant (and bravely honest) articles, I am just so happy to see you doing so well!
    xx

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  12. Anon

    I know somebody who is in need of a bed. She is a mum of 4 and has struggled all her life with this disease. I had no idea until meeting this lady that the help available was SO limited. There are a lot more people out there needing help than we know!

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  13. Jesleen

    Hi Kate, I just wanted to thank you for such a courageous, honest and important article. As a survivor of Anorexia Nervosa, I only too well understand the desperate need for more beds for patients. What if we were to tell a patient with Leukaemia that they could not receive life saving treatment simply because their organs were not yet failing? I am sure you will be all too familiar with the mortality statistics of Anorexia Nervosa, with up to 20% of patients dying from this disease. Few people, and even fewer in positions of power, seem to understand just how dire the situation is. Thankyou for bringing this to light, and I pray that you are able to live in peace and recovery. http://jesleen92.wordpress.com/

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  14. Anna

    I had a very close friend die as a result of anorexia, right before her 21st birthday. I was devastated, and really didn’t know how to deal with it – I couldn’t understand why she wouldn’t eat. As a recent sufferer of another mental illness – depression – I understand totally how none of it really makes sense.

    What I realise MORE now is the ignorance that still exists, in this modern, progressive society, about mental illness. It’s dreadful. The more people like you that speak out about their own stories (and hopefully one day, me), the better we’ll all be educated about it.

    So Kate – you rock. Thank you for sharing.

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  15. dizee

    Thanks for a great article on something that is all too prevalent in women and men today. Several friends and family friends have been diagnosed with eating disorders and I have seen first hand the devastating effect it can have on not only the person suffering but the family as a whole.

    A treatment option that I have seen work, and succeed, is from the Maudsley institute. It is the only method of care that has had any research and is something that should be more widely publicised. It focuses on re-training the brain to eat, in a family based situation. While I realise it isn’t ideal for everyone, it can work. Go to http://www.maudsleyparents.org to read more on it. I am in no way an expert.

    Thanks again Kate, I think it is so important for Governments to realise that there are some serious health issues out there and we need to tackle them!

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  16. sunlight

    This is such an important message. One of the worst things you can say to a person with anorexia or bulimia is that they are not ‘sick enough’ to need treatment. This automatically translates to not being ‘thin enough’ and is basically an invitation to continue to self destruct. When you have an eating disorder you are so ambivalent about receiving treatment in the first place that to actually approach a health professional or hospital to ask for help is the result of an endless battle in your head. The ‘healthy’ side may briefly triumph and you may make a huge effort to put yourself out there and ask for help, only to be told that no such help exists and you aren’t ‘thin enough’ yet. I know this from personal experience.

    It’s devastating and tragic – especially since eating disorders can kill at any weight. In a country like Australia we should be ashamed that our health system is so backward.

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  17. tanlee

    Great article Kate. You’ve really broadened my understanding of anorexia. Thanks.

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  18. Mary

    Well done Kate on a brilliant and brave article. We need more people like you to speak up. It sure is time for changes to occur, both in attitude and in treatment availabilities – they are LONG overdue!

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  19. silvana

    very moved by your article- the message needt to go further- we need more care and good quality care. congratulations on your success it cant have been an easy road. on another topic- in the car today our local radio station played a song that went something like – lets party like we’r gunna die, like we’r gunna die like we’r gunna die- i nearly freaked out- i can imagine a young person on the edge listening to that and considering their last party- cant stop people making the songs but this sort of song should not be aired

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    • daisykate

      Hi Silvana, thank you for your note, I’m so pleased you were moved by my story.

      That song sounds just awful! Do you remember what it was called? Horrible.

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      • Anonymoose

        The song is Die Young by Ke$ha

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    • MJ

      But the world can’t be censored in case something triggers feelings in someone. Listening to a song isn’t going to make someone actively suicidal. If someone is thinking about suicide a song like that is obviously going to have a negative impact, but it’s not going to be the deciding factor in their health outcome.

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  20. Anonymous

    I agree… I suffered from bulimia during my early uni years and while most thought it was a way to lose weight, it was more about control. It was the only thing in my life at that time that I felt I could control. I was lucky that I had great friends and family who stood by me while I faced (and self cutting too). Now looking back (while it may ‘bad’), it has shaped me to be who I am today. Much stronger and happier and appreciating every single moment in life :)

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    • daisykate

      Hi Anon.,
      I completely agree – when you’ve been well long enough to appreciate its effect on your life and how precious recovery is, it does make you stronger.
      Thank you for reading my story, and adding yours. Continue to be happy & strong! : )

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  21. Olivia Patrick

    Thanks so much for sharing your story Kate.
    If anybody would like to help improve the treatment of eating disorders in NSW, please sign the petition that Ella started here http://www.change.org/en-AU/petitions/fed-up-nsw-health and feel free to visit http://www.fedupnswhealth.com for further information.

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    • daisykate

      Thank you so much, Olivia. I will – and I’ll urge other people to do so as well.
      Please, if you know Ella personally, pass on my best luck and love.

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      • Ella

        Hi Kate,
        If you would like to get in contact with me, please email from the fed up website :) Thank you for this article!
        E. x

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  22. Alexis Carey

    Thanks so much Kate, this was an amazing, brave and honest post and I’m so glad you had the guts to tell your story. I’m so sick of the attitude some people still hold when it comes to eating disorders. They are serious, deadly, mental diseases and we need to start treating them as such.

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