‘They have to be ready to change..’

‘They have to want to change, they have to be ready to change, no one can make someone recover, we can’t save everyone, it has to come from them and if they aren’t willing to cooperate then we cannot help them.’

Noncompliant. Difficult. Chronic. Treatment resistant. Non cooperative. Unwilling.

If someone wants something then they reach for it don’t they? If someone wants something then they make decisions which are reflected in their choices, right? Well, yes. Yes, in many different areas of life that is what happens but with anorexia that isn’t how it works; I wish it were!!

Whilst treatment providers wait for people to ‘choose’ recovery, be ‘motivated’ to make changes, ‘comply’ with treatment and ‘cooperate’ with a programme, those people become more and more unwell. Of course this means that the illness has more time to infiltrate a mind, destroy a body and suck all hope from a soul. It also, of course, means that people need a much higher and more intensive level of care and support. This in turn not only causes a greater deal of pain and torment for all involved, but it also costs a whole lot more money. It’s been widely reported that the NHS doesn’t have the money it needs to provide what it needs to provide and yet, really, money is being wasted by losing the opportunity for early intervention. Early intervention can make the difference between someone recovering with a low risk of relapse or spending years being treated with a very bleak outlook as a ‘chronic’ sufferer.

Anorexia isn’t a choice and whilst many people believe that not eating is a decision that is made by the person, it really doesn’t work like that. It isn’t that I decide not to eat, it isn’t that I’m not hungry, it isn’t that I don’t need food or want it; it’s that I can’t. Imagine being locked inside of your body, the things you think are muddled beyond any kind of possible comprehension. When the things you feel and the stuff you want to say is blocked up and stuck, you open your mouth to say something but the words spoken aren’t the words you’d needed to speak.

‘Would you like some dinner, pasta or rice..?’ Such a simple question and yet the thought process that follows that question is like some impossible math equation that involves brackets, letters and weird shapes that you’ve never seen before and have absolutely no idea what they mean!! When anorexia is loud and I cannot make sense of things that question may as well be ‘Would you like x4+bx3+cx2+dx+e and (x-a)(x-b)(x-g)(x-d) or {-D±Ö(D2+4C3/27)}/2 perhaps 8pqr x+(p2+q2+r2)2..?’ Add in the deafening noise from your own thoughts rushing around your mind, bumping into one another causing more thoughts to form, causing more rushing, causing more confusion, causing more equations usually ending in one of the following;

A) This shall all be happening internally and because I won’t feel comfortable enough to ask for help, I won’t feel I deserve to ask for help, I will feel I am a burden, I feel I could be judged or trying to explain is likely to cause more anxiety; I shall politely decline and add that I am not hungry at the moment.

B) This shall all be happening internally but it will show outwardly in the form of anxiety, such as shaking, jiggling, pacing or increased respiratory rate. I won’t want to be a burden, let anyone down, cause disappointment or questions, so I’ll try to join in a little, try to blend in, try to appear ‘normal’ but the internal torture will be continuing, growing and expanding, louder and louder until I can no longer hear you talking to me. I see your mouth moving and I try to keep up but I hear nothing over the sound of my own thoughts…

C) This shall all be happening internally and I’ll have lost all hope of keeping thing under wraps because due to the fact that I’m screaming, crying hysterically, hurling nasty comments at anyone that comes near and ready to pull my own skin off; it’s pretty external too! This, of course is embarrassing to say the least and it doesn’t encourage you to be in a situation that could involve food, or fluid, or snacks, or humans, or…

I am going to separate ‘Becky’ and ‘Anorexia’ for a moment, I’m sure it’ll sound a little weird, but it’s the only way that I can explain it. Becky would love to be recovered, obviously anorexia is against that. Becky would like to eat that dinner, anorexia doesn’t agree. Becky would like to be physically healthy, anorexia would prefer illness and incapacity. Becky would like to do awesome things with her sister, anorexia wants to isolate. Becky would like to break free from anorexia and so anorexia does all it can to keep a tight grip; a large part of that is portraying the person as something different to what they really are, who they really are. So you see, the words I speak are not always the words that I wish I could speak, the way I am is not always the way I truly feel, if I seem distant or aloof it is, more often than not, that the noise in my head is so painfully loud and disorientating that I cannot follow a conversation. Do I choose any of these? No. Can I snap my fingers and eradicate these? No. Do I wish I could? Yes!

Recovery does include choice, decisions and taking responsibility for your wellbeing, but that has to come with time; by setting someone up with all the responsibility of making ‘good’ choices, doing food prep, refeeding themselves, distractions from scary thoughts and self-managing other behaviours, the likelihood of a positive outcome isn’t great. The possibility of relapse, entrenchment, chronicity, physical damage, psychological risks and death are scarily much more likely. Treatment has changed over the years and there are some amazing research studies out there that have completely altered the way that the world views eating disorders and the treatment that gives the best outcome; unfortunately that up to date information and treatment has yet to become the ‘normal’ practice. Those that manage to get early intervention, those that are treated intensively from the word go, those whose parents are included in treatment and empowered all have much more favourable outcomes, over those that are treated by out dated, non-evidence based treatment. Some parents have taken to using a ‘Life Stops Until You Eat’ approach; I think some people would probably deem this to be over controlling and impractical… I’d say they are amazing people that have found up to date information and regardless of whether the services in their area are up to date or out of date, they are doing what they need to do in order to save their child. My parents were told by the Doctor that they were worrying, that I was fine, that it’s just a phase that most girls go through, not to make a big deal out of it as it’d pass and if they did involve themselves they’d make things worse. That Doctor was wrong, that Doctor failed my parents massively because he made them feel stuck; what they knew was right for their daughter wasn’t the same as what the Dr had said and I really hate the fact that he added in that little bit suggesting that the blame would be on them. WRONG. Everything that he said was wrong. I wish the information available now had been available then because possibly, really possibly, life could have been very different for all of us and anorexia wouldn’t have taken as much as it has.

So, you see, leaving someone alone until they are ‘ready’ is only ever going to cause harm because the more unwell someone becomes, the less likely they are to have the cognitive function needed to make those decisions. If it were as simple as being ready to make changes and deciding to do things differently then we wouldn’t see so many losing their lives, we wouldn’t see the level of chronicity, we wouldn’t have eating disorder units or people being tubed on medical wards; there’s no fun in any of this. If it were as simple as a choice I’d have made that choice a long, long time ago. Always remember; separate the eating disorder from the person, they are not the same and not everything is as it seems when it comes to what is said and what is meant… Locked inside a cage, screaming but screaming silently, I’d yell all sorts but really I was begging, begging for someone to step in and take over the fight, argue with anorexia and provide a wall that meant I had no option; if I had no option anorexia was still loud, but the thoughts aren’t the same because there are no loop holes, no escapes, no ways around it… Sometimes that’s what it takes, sometimes that’s what is needed… Sometimes that’s what I need.

‘They have to be ready to change..’  – No, no they really don’t but they do need someone, be that family, friends, a treatment team etc. who are willing to safely and consistently enforce the steps that need to be taken are taken, until the person is ABLE to make changes. Whilst the brain is malnourished cognitive function is massively impaired, the brain is poorly and that person may desperately want to make the changes, it is the illness that can make that impossible. They aren’t being awkward or difficult, it’s not a case of choosing to disengage or ignore advice; things can take time, recovery isn’t easy and sometimes we need someone to step in and take the reins for a bit.

Above all else, if we’ve been labelled as chronic, treatment resistant or noncompliant… Please don’t write us off as ‘never going to recover’, please don’t give up hope that we can get better because when we have no hope we so desperately need others to hold hope for us… Please don’t give up on us; I know it’s frustrating, I know it can be like groundhog day but please, please don’t ever give up on us because we are still in there somewhere locked inside, blocked and silenced by anorexia

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‘They have to be ready to change..’

26 thoughts on “‘They have to be ready to change..’

  1. Right on! You’ve articulately expressed the fundamental reason why I co-founded the Elephant in the Room Foundation with my daughter. Thank you for being an agent of spreading ONLY GOOD INFORMATION often buried among mixed messages still rampant in the real world!

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  2. Amy says:

    Reblogged this on Amy's Invictus and commented:
    When I read this article it was as though she had taken my brain out and smudged it onto a piece of paper… Or the computer screen. I know that in the end, the real fight to change is with the sufferer themselves, but our friends and family can’t just sit around and wait for us to make all the moves toward recovery; leave their room/house, dry their tears, pick up the fork, make a meal, even just speak up.

    It comes down to us, but we CANNOT do it alone. The times I have been at my lowest (mentally) have been when I felt completely alone with my Ed: when it felt like no one could help me – hold my hand as I jump over the huge puddle on the road, take my handbag as I struggle with juggling it and my own thoughts and life, offer me a lift to wherever I need to go, grab another sledge hammer and help me break down the brick wall Ed has built in front of me…

    Yes, we need to recover FOR ourselves, but we can’t always do it BY ourselves. If you know someone with an Ed, let them know that if they need some help getting through it all, you’ll take their hand, hold their handbag, drive the car, bring a sledgehammer… Whatever they need at that time. Most importantly, Make sure you keep that promise. If you can’t keep it, don’t offer it. Obviously there will be times you can’t, you can’t be available 24/7… The reason I say this is because sadly I have had friends offer help to me and never wanted to help, or couldn’t ever help when the time came. To ask for help in a desperate time and be turned down for it is the scariest, loneliest things. Especially when it’s a recurring event.

    Anyways, I’ll get off my soapbox now.

    Read the article. Read it now. You know you want to! 😉

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  3. Sarah says:

    Simply fabulous! You re-count our journey with our daughter as well. We were told over and over to not be the “food police” but between therapy appointments our daughter wasn’t nourished and her disease became more and more entrenched. I feel like it should be criminal to continue talk therapy whilst the patient is not being nourished. Insanity. Thank you for such a well written piece. I plan to share and share.

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  4. I agree with this, to some extent but I do believe that therapy should be patient lead and not forced upon by a service. In my last relapse which was two years ago, I got incredibly poorly, very quickly which was down to the forceful nature of my treatment. Luckily, I had an incredible psychologist at that time who bravely trusted me and pulled me out of inpatient to start work 1-1 with her. And it worked. I began to gain weight and control over my disorder and I couldn’t have done it if I had been continued to be forced into treatment. So, though I believe early intervention is key to full recovery, it’s not black and white which is why it’s so difficult to come up with one clear thing that works for eating disorders.
    xo

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    1. I suppose we also have to take into account that there is a massive variation in standards and approaches used by units, as well as OP care. If we took all of the best bits and that became the standardised level across the board perhaps successful treatment would be more common?

      Do you think that things changed because you were able to argue for yourself though? For some that ‘choice’ just isn’t possible, or it becomes possible with treatment and time. I think it does also vary on the age and length of illness, not the illness so much, but how the treatment pathway is taken. I think people need to have input in to their own recovery, but only when they are able to do that, not when anorexia is still deciding the decisions of that input.

      I agree that there needs to be flexibility in treatment, but in terms of getting a person to a place where they can manage flexibility and not just be railroaded by ED, flexibility has to be, well, less flexible! xx

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      1. I agree, there are points where someone can lose their voice altogether and forceful intervention is needed and flexibility cannot exist but what I mean is that, that doesn’t work for everyone. I find it hard to imagine a clear and structured pathway for eating disorder treatment because although symptoms are similar, everyone is individual and personality in itself can play a huge role in the way someone reacts to treatment. I can imagine that me and you have had very similar symptoms but what works for you in terms of treatment may not work for me and vice versa. So yes, i do agree that in certain cases flexibility needs to be less flexible, it also must be flexible with others. I was lucky with my last psychologist, I haven’t always been so lucky and haven’t always had a voice.

        (on a side note, i thought your blog was really well written and I do agree with you. I’m also incredibly under confident when i disagree so please don’t hate me 😦 ) xx

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        1. I don’t hate you!!!!! =) We are all different and we’ve all had different experiences.

          If the nutrition part has to come first in order for the brain to function cognitively in a way that allows non disordered thinking, does that mean that early intervention could prevent the years of treatment, flexible or non flexible? If it wasn’t a case of wait and see, come back in 3 months, ignore it it’s just a phase and that type of response, if it was pounced upon from the absolute beginning, could it make a difference? If more parents were aware of the early warning signs and Drs empowered them to support their children? The idea of Drs telling parents not to push their child to eat because it’ll make it into a problem when it might just be a phase means that parents are terrified to do what their instincts are telling them to do incase they make things worse. If a parent notices a child is restricting their intake and they were then watched like a hawk and nutrition was not optional..? Could it stop the years and years of torture..?

          The Maudsley method is recommended for those that have been unwell for under 3 years. If we jumped in the moment there was a sign, could people have their lives back without years and years of being in EDs grip? xx

          Liked by 1 person

  5. Amy says:

    This is an amazing piece. It’s like you were staring into my brain when you wrote it! I hope it’s ok, but ok going to use it as a tool to help explain to family, friends and my treatment team what is actually going on in my head. You have worded I perfectly so I’d love to use it if that’s ok?

    Stay strong and keep fighting xx

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    1. Hello Amy,

      Yes of course you can use this to try to help your family understand. Have you ever read Decoding Anorexia by Carrie Arnold? I found it really useful in helping me to understand the biological side of things and why our bodies respond in different ways.

      Best of luck and lots of love. xxxx

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  6. Los says:

    Becky- amazingly well written and speaks to my daughter and our family. She has struggled with anorexia for many many years. You have articulated what she has been able to say when well-nourished. She has been sooooo angry with me – but “she” is not my daughter, it is the anorexia. When well enough she has thanked me for not giving up on her and that she would have died. Her words. When very ill, I am the devil incarnate. She is inpatient right now recovering from the scariest relapse yet. Every organ shut down; she is now safe and under court order in another State. It makes me sad. But she is well enough to be thankful that she is alive and safe. She so, like you, wants to be rid of the disease. Her AN is torturtuing her. I’m so amazed at your insight and based on what you wrote believe that this is a constant battle. Thinking of you with admiration. Will share this with my daughter and family members who do not understand.

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    1. Hello Los,

      Thank you for your comment. I’m so sorry to hear that you’ve been through such a difficult time with your daughter but I’m glad that she’s safe and is able to understand that you’ve taken the steps that you have in order to save her. I remember saying so many horrible things to my parents, which I will regret forever, but I never meant any of them. I’d be screaming internally, but externally what was said wasn’t ever the same as that internal scream. I remember thinking, and I still do sometimes, ‘please, please hear me, I’m in here, can you hear me?’ Luckily my parents did and they understood that there was a difference between who I am as a person, and what anorexia is; but there’s no denying that it took it’s toll on them.

      I have to say that the people who have been harshest, fairly harsh but I believed it was unfair at the time, are the people that I am the most grateful to. It’s odd to say, but the people that never challenged me and were always very laid back with me, are the people that anorexia preferred to be around. The people who were fair but challenged me and took a level of responsibility from me, are the people who anorexia hated but I longed to be around. The ability to see ‘anorexia’ from ‘Becky’ is massively important, not everyone can.

      Your daughter sounds lucky to have you on her side, and I wish you both all the best with everything. I hope your family members that don’t understand can begin to learn – sometimes people just don’t get it and no matter how hard you try to explain it, they still don’t get it but don’t be disheartened. Lots of love to you both. xx

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  7. Nora says:

    Early intervention? We thought that’s what we were doing but it did not seem to help with our daughter. At 11 she stated she was not worthy. That she was just taking resources from this world. That if death came it would be OK with her. She did not want to eat, we immediately got help with in the first week of her declaration. We learned about Maudsley and immediately started re-feeding. We got her weight back up but things did not change. A few months later we got her on anti-depressants. That helped with the depression and anxiety some but she still said she was fat and hated her body. This really came out of no where at 11 years old. She is now 16 and AN is still as strong as ever. She talks to us at least. She is complient with food and her weight is good and pretty stable, but just last night she started taking about the desire to cut her body! This is exhausting for us and for her! She sees her psychiatrist, her therapist, her nutritionist, her PCP. We have her do yoga and meditate, she takes Zinc and other suppliments that have been “known to help.” We want her to be able to go to college, she is unbelievably smart. So hard. We thought since we caught it early that we would prevail.

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    1. Hello Nora,

      I’m so sorry you’re having to fight your way through the hell that is anorexia. The fact that she speaks to you is positive because that can be really difficult. Being stable is better than being unstable, but it’s still very difficult because, like you say, it’s exhausting.

      One of the things I’ve seen written again and again is that a lot of AN patients are kept at a weight that is too low for them, which means that the brain is kept within the grips of AN. This causes the years of AN, repeated admissions and chronicity that is so often seen in those with AN.

      Have you ever taken a look at FEAST? It’s an organisation for parents and caregivers of those with EDs – http://www.feast-ed.org

      From the weight point of view, it may be that you’ve got an up to date care team in place, but just in case! http://temp.feast-ed.org/TheFacts/DetermineBodyWeight.aspx This link might be of use.

      Does your daughter feel that the team are helpful? Do you feel that the team are helpful? I wish you all the best, don’t settle for anything less than complete recovery because your daughter, and your family, deserve more. xx

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  8. Mary says:

    Thank you! I am 53 and the eating issues have greatly worsened over the last two years. I am on week three in a medical hospital and I hear constantly that it is my choice. If I would just eat, I could be out of here. I want out desperately. I can’t even sign myself out AMA because they will put a mental health hold on me if I do. I need HELP to break this, not recriminations and scoldings and carrots dangled (I will take you for a walk outside if you eat all of your lunch). I have a bite-sized candy bar that someone brought last week. I want it so desperately but I can’t eat it. I cry in frustration in the stupidity of it. I was a nurse. I also tutored nutrition at a university. I have degrees. I am not weak, stupid, or pig-headed. I am hurting. To the medical staff: please see as a person, not as a difficult patient trying to stay in the hospital… Stop avoiding me and making me feel unwanted. Making my stay unpleasant won’t convince me to eat and go home. I want to be out of here even more than you want me out of here.

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    1. Mary, I am so sorry that you’re having such a horrible time at the moment. Is there any possibility that you can access a specialised eating disorder unit once you’ve been medically stabilised? I think a lot of people who work within the medical community find it very difficult to understand eating disorders, including some that work within the mental health profession! It’s so often seen as a choice, a decision that we are consciously making and that is so incredibly frustrating. It couldn’t be further from the truth, which is that it is terrifying to feel so out of control. So often people will tell me I need to let go of the control I have around my eating and I just stare at them with a blank expression thinking, would I be stuck like this if I had any control over any of this? Or that I need to regain control over my eating, and I just think the same thing, wouldn’t I be doing that if I could? Wouldn’t I have done that over a decade ago? It’s infuriating, beyond infuriating when it’s your life.

      Do you have anyone from a mental health team that you could speak to, who could speak to the nurses and perhaps help them to understand things a little better? On the note of the little bar that your friend brought to you, I hope that you do have it. I know it’s not as easy as just thinking that you’ll have it, but I will tell you that it’s okay to have it, that you deserve to have it, that the thing that is stopping you is an illness and it is the voice of the illness. The things it’s telling you, the way it’s making you feel, none of it is truly real – it is to us, without a doubt! To the world outside of anorexia though, it’s not real, it’s an illness and it’s full of utter rubbish – it lies. Fighting against that voice when it’s so powerful is so difficult, and sometimes we need someone to fight for us – regardless of age or education!! Those things don’t mean anything in the fight against an eating disorder, but they are important for you as a person. They are achievements, they are milestones, they are memories, they are potential hopes, they are what makes us who we are. However, that can feel so squished when the eating disorder is raging against you. Which is why it’s important for you to have people around you who understand and do not say the ridiculous comments that you’ve said they are!!

      I really hope you nibble on that yummy nom, I know your illness will tell you all sorts of things that go against what I’m saying, but it is lying – that’s all an eating disorder ever does really, isn’t it? You deserve to be free from that voice, you deserve to be healthy and happy, you deserve to be surrounded by people that do understand – even if that means some people that understand and some that you ignore… 😉 You’re not choosing this, we know that. Do you think that an ED unit might be an option? I’m just thinking that they can cover the monitoring but it also means that you’ll HOPEFULLY be supported by people that are much more aware of eating disorders and up to date treatment. Sending you lots of love and have that bar, even if it’s broken up over a few minutes, hours, days – it’s also totally okay to have it in one – but don’t allow the ED to make you feel this way. Thinking of you. xx

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      1. Mary says:

        I am one of the great many without mental health hospital coverage, and my social security barely covers my rent. I have spent enormous quantities of time researching places and options and making phone calls, following every lead offered. The hospital SW and county mental health have given up after weeks of searching. I have never had any sort of ed help and it appears I won’t get any.

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  9. Wow. This post so incredibly “hits the nail on the head” so-to-speak & insurmountably articulates what SO many professionals — in the mental health field, even some who claim to ‘specialize’ in EDs, & most definitely what far too many medical drs need to learn… not to mention those “professionals” — like insurance company employees and especially gov’t officials — who are in positions like delegating if/when/where/how long/etc treatment is even an option to be made available for an individual who struggles with an ED. And yet with all the growing discoveries which continue to be made & research into EDs that also continues being done, far too many sufferers — regardless how ill (medically, physically, emotionally, and/or mentally), how continuously chronic one will likely inevitably become [w/o proper tx] & sadly often remains, nor how hopeless & helpless a sufferer may end up feeling — STILL [they] are not afforded the opportunity to even be eligible, far too commonly due to finances {or lack thereof rather}, for ED-specific treatment(s). And thus, without proper & appropriate treatment being made more readily available to sufferers, the statistics of deaths caused both directly & indirectly from EDs will only continue to rise.

    Thank you Becky for so eloquently explaining/saying what far too many who are plagued with EDs go through. I’m sorry to hear about your seemingly consistent personal battle with AN & the torment (from those who don’t understand […and those who remain ignorant to even trying to learn about your battle to begin trying to at least somewhat empathize with you & what an ED is like to day-in/day-out to battle against], as well as the torment ED itself causes within you. You’ve been struggling far too long and You *DO* deserve & Are SO *very* worthy of, always have been, unconditional support and proper treatment to be able to beat this vicious illness.

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  10. Reblogged this on Hunger Lies Deep and commented:
    This young lady writes eloquently on the fact that eating disorders are NOT a choice. That the sufferers cannot choose to change, choose to eat. And she writes on how badly she and many, many others – my daughter included – have been badly let down by our vastly outdated treatment here in the UK. Thank you, Becky.

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