‘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