School, OCD and prison… I think..? Maybe?

My last blog post was about OCD and in that post I mentioned that I would be writing a separate one on my experience of trying to manage OCD and the school environment. As my OCD type thinking patterns and behaviours began to show at the age of 3-4, it is something that I’ve always had; it is my normal because I know no different. There are times when it is worse and there are times when it is a little easier. The impulsive thoughts and compulsive behaviours have changed over the years, as I have grown up, as I have experienced different events and as I’ve learnt new information. However, it has always been there, locking me into a constant state of anxiety.

So, setting the scene… I was an anxious child that didn’t like to do things without my mum or dad, I wasn’t comfortable with socialising and I didn’t like being left anywhere because ‘what if..?’ Before year one of primary school, we had some time in ‘reception’. My mum would take me to the school and the teachers would be welcoming the children and interacting with the parents. I was terrified. I begged my mum not to leave me, I cried, I screamed, I clinged on to her, refusing to let go and this ultimately led to the teachers/support staff literally pulling me off of my mum. At the time I didn’t know this, but when I was older mum told me that she had walked home crying after many of those episodes.

I became a little more settled over time and whilst I remained anxious, I didn’t scream the place down each morning! For dinner time we had the option of staying at school for a cooked dinner, having a packed lunch, or going home with our parent/carer. I was very particular with food so cooked school dinners were difficult because of the food, the commotion of the dining room and the scary dinner ladies. The rule was that you had to ask to ‘turn around’ before we turned our tray from the main meal to the dessert and then again before we left the table. There were two dinner ladies that I would pick out, but the rest I’d avoid because they were much harsher. If you’d eaten enough of your main meal then you’d be allowed to ‘turn around’, but if they thought you needed to eat more then you’d have to eat more before you could ‘turn around’. I fully accept that I was a picky eater and that many people will be of the belief that children should eat what’s in front of them because that’s what happened when they were young and it ‘never did any harm’… Newsflash; not everyone is the same! I can understand that it’s important for children to get the right nutrition, but some of the dinner ladies seemed to suffer from a slight power complex. I remember a boy crying because he didn’t like peas but he was told he had to eat them, they sat there for ages and he was gagging. My friend taught me how to hide food, which now seems disordered, but it wasn’t in a disordered way at that time. I didn’t really do school dinners, but on the odd occasion that I did, it wasn’t something I ever looked forward to!

Most of the time I’d go home for dinner. My mum would pick me up, we’d go home to munch and then we’d walk back to school. I managed that pattern much better because it broke the day up and gave me a chance to speak to mum – the whole day was horribly scary. Other times I’d have a packed lunch, but that came with it’s own problems. We had an attendance register and a lunch menu where our name would be called, and we’d answer with ‘school’, ‘packed’ or ‘home’. It sounds simple enough, just a quick run through the class and a one word answer, easy right? Well, no… During year 4 this became one of the most difficult times of my day; what if I gave the wrong answer, what if I’d remembered wrongly? Every morning went something like this, ‘Rebecca?’ -hesitation- ‘Er. Er I’m, I mean, I think I’m packed lunch, I think.’ ‘Would you like to go and check you have a packed lunch in the box Rebecca?’ So off I’d go, to look in the big bin thing (which I’d always struggled to get my head around) and sure enough, there was my packed lunch box, with my name on, where I’d left it when I first walked into school. I’d go back to the classroom repeating over and over ‘I am packed lunch, it is in there’, I’d go into the classroom and the teacher would look up and I’d say ‘I’m packed lunch, well I think I am, I might be…’ I knew I was, but what if I wasn’t, what if I was remembering from the day before? One lunchtime I sat at the table with my packed lunch box in front of me crying and a dinner lady approached me asking what was wrong, I tried to explain it to her; ‘It might not be my packed lunch,’ ‘Okay, so it isn’t your packed lunch?’ ‘Well it might be my packed lunch, it is, it might be,’ ‘So it is your packed lunch?’ ‘Yes, well no, I don’t know, because it might not be!’ I was becoming more upset and panicked as the conversation continued. ‘Well don’t eat it if it isn’t yours!’ ‘It is mine, but it’s just it might not be!’ We then discussed what I had in my packed lunch, the way my lunch was packed and the fact that I’d seen my mum make it that morning. Following on from this particular event, mum then added notes in my lunch box each day, to provide reassurance to avoid a repeating cycle, but the lunch register continued day in, day out.

I had an awesome teacher to begin with, she was kind, caring, gentle and she was good with children. Although, she did have time off when she had her two children which left us with a rather scary stand in who I didn’t particularly like. During the summer holiday between year 2 and 3, whilst on holiday, we witnessed an incident in which someone lost their life. I was 7. My brain was already wired slightly differently, but at the age of 7 my OCD became much more intense and overwhelming. I remember going to a friends birthday party a few weeks after that holiday, which we came home from that night thanks to the boat company helping us with the travelling. Several of the kids were on the bouncy castle with a few parents standing around keeping an eye on us. Whilst bouncing around we were all chatting about what we’d done over the summer holidays which led to a rather awkward conversation and looks from some of the adults that, at the time, I didn’t really understand.

On the first day of year 3 mum came in to speak to the teacher, a new teacher, just to inform her of what had happened and that I probably wouldn’t want to speak about my summer holiday and also to flag up any possible anxieties that may crop up. Now, I believe this was quite a sensible thing to have done but it would appear that the teacher thought otherwise. She told my mum, in the most condescending way possible, that we wouldn’t ‘be chatting about summer holidays’, that ‘this isn’t a nursery class’ and we wouldn’t be ‘sitting in a circle on the floor’. Year 3 of primary school was a complete nightmare and my year 3 teacher seemed to find pleasure in making things even harder for me. I’m going to refer to her as Miss3.

My mum bought me a book with cartoon pigs on it and she told me to write down the things I worried about during the day at school, so that we could talk about them after school. My head seemed to become so full of worries over the course of a school day and this was just an idea to try to ease that a little. I was in the playground and Miss3 took great delight in commenting on my ‘little worry book’; the comments, belittling and embarrassment that she caused during that year made school almost unbearable. Nothing was off bounds, little comments about my OCD in a joking, snide type manner were very common. One incident sticks with me more than the others, we’d been making something with little red beads as decorations, when we had finished we cleaned up and a couple of us went and picked a few up from the floor and put them in our pinafore pocket to make cards for our mums later on. Miss3 found out and she was cross, she was beyond cross, she did lots of shouting and screeching and told me that I was a thief, that I’d end up in prison, be on my own, my mum and dad wouldn’t love me anymore and would never see me because I would be locked away etc. I can’t remember everything that was said, it went on for a prolonged period and it was 21 years ago, but I do remember feeling frightened. When my mum picked me up from school I sobbed, telling her that I was sorry, that I didn’t want to go to prison, that I didn’t want for her and dad not to love me; she had a word with someone within the school staffing team, but very little was ever dealt with. Even now, it isn’t something I talk about because there is still shame attached; I was wrong to do what I did, but I was a seven year old child, the beads would have been hoovered up at the end of the day anyway, and I don’t think a teacher should be speaking to students of any age in that kind of way. She taught us a dance and told us that we’d be performing in the school assembly, so we needed to practice so that we had it just right. We were lined up, waiting to go into the afternoon assembly, excitedly chattering about the dance when she laughed and said ‘you’re not doing a dance’ and made a comment about how we wouldn’t be embarrassing her, she wouldn’t let us embarrass her, or something along those lines.

I’ve always tried to be good, do the right thing, meet the expectations that are placed upon me and those I place upon myself, and I suppose that’s probably partly my personality to a degree, but it’s intensified by how OCD works.

I became quite skilled at hiding behaviours, although some were still noticed some of the time. Middle school came with suffocating anxiety about awful things happening to those I cared about, whilst I was at school. The pay phone in the school reception became a common feature in my day; panicked phone calls to my mum to check everyone was okay, needing that reassurance, that bit of oxygen. I spent my lunch time and break time participating in clubs and doing ‘office duty’. My school work needed to be perfect, and when I was given a detention my world felt like it was ending although the detention ended up not happening because the teacher told me that I’d learnt my lesson, I’m assuming he came to that conclusion from looking at the mess I was in.

The overwhelming need to be good, make sure I’ve not endangered anyone, keep people safe, obliterate any risks, please people, get good grades, avoid germs, protect from contamination and all of the other bits that create the crunching pressure that OCD brings, all whilst trying to pretend that you’re just like everyone else, is utterly knackering. It’s as though you have normal life, and then you have a constant barrel of thoughts and anxieties that you’re having to deal with whilst appearing not to be dealing with anything other than what others can understand or see, every day and it’s incredibly draining.

There’s a lot of talk about providing mental health support in schools, there are positives and some very concerning negatives to this and in my own personal experience, I think kindness could have gone a long way. (There are many amazing teachers – high school will be a separate post – out there who do a great deal of good, but there are also those that taint an experience and cause harm.) A general understanding would be a good place to start, before we become entangled in a discussion around teachers becoming specialists and having to do that on top of their usual work, if they had an understanding and awareness and an ability to be kind, then that could make a difference to many; and even if a positive change impacted only one person, that’s one persons family and their future, and I can’t see anything negative in that.

School, OCD and prison… I think..? Maybe?

OCD? – Don’t expect a tidy room!

Anyone who has OCD, or knows anyone who has OCD, will know that it isn’t a simple condition that can be explained in a sentence; yet so many TV shows try to do just that. The best known show is probably Channel 4’s ‘Obsessive Compulsive Cleaners’, that sees a couple of people with OCD cleaning the home of someone who hoards items. The property tends to be full to the brim with personal possessions, several years worth of dust, thick cobwebs which are strong enough to be used as nets, rodent droppings, dead rodents, living rodents, critter infestations and unusable bathrooms and kitchens. The people that live in these houses are clearly struggling and need support, but I don’t think humiliating them is the correct way to help them. So, the people with OCD go in and express their disgust, the home owner expresses their ambivalence, they disagree, the people with OCD announce they have to leave, the home owner wants them out, they talk and then get on with cleaning the house – tada, magic!

There are probably 2 different forms of OCD shown in this programme; cleaning and hoarding. However, that has somehow translated to ‘everyone with OCD loves cleaning’, which simply isn’t true. (I’ll just add here that some who do have OCD in a cleaning form, wouldn’t be able to even contemplate stepping inside a property like that, let alone touching anything!)

OCD can be, and often is, a disabling condition and it has many different presentations. Some will require things to be spotlessly clean, some will repeatedly check things, some people will be unable to leave the house, some people will struggle with intrusive thoughts and some people will have a mixture of forms. There are many, many other types and this page explains them well – Types of OCD

At the age of 3 my parents began to notice that I was a little quirky in the way I did things, but as time went on it became apparent that it was more than the ‘normal’ child quirkiness. At the age of 7 we witnessed an accident whilst on holiday, I won’t go into it because it feels wrong to do so, but a man died, a family were left heartbroken and my dad, along with another holiday maker were involved in the events that immediately followed that single moment of error. My brain was already wired slightly differently, which was very apparent at school and when I was around my friends, but this incident caused that to intensify tenfold. The world terrified me and everything became a potential danger; I had to protect the people I love from the horrors that hid around every corner. I didn’t want to spend any time apart from my mum and dad, if I was always with them then nothing bad would happen. If I could make sure my little sister was safe, if I could make sure appliances were off, doors were locked, the heater wasn’t leaking gas, the things in the fridge weren’t over their use by dates and make sure I did everything my OCD told me to do in order to erase the horrible thoughts that attacked my mind then it’d be okay.

Being an anxious child meant that school could be quite tricky at the best of times, I enjoyed learning but the socialising part of it was often quite problematic and I just wanted to be with my family. I would become very upset very quickly and I was very aware that my way of doing things was different to others and whilst I learnt to hide the majority of my OCD behaviours, sometimes it wasn’t possible to hide it. I’m going to write about a few experiences I had in a different blog post as I want to tackle those slightly differently.

My OCD has taken on various forms over my life, but they’ve always been heavily based around responsibility and fear; being responsible for something bad happening, for allowing harm to happen, for allowing unsafe situations, for not realising that I have a responsibility, because it’d be my fault if anything awful happened. OCD forces thoughts and images into your mind, and for a long time I thought that this meant I was an evil person, who else would think such horrible things? People tell you not to think about things that upset you, so I tried not to think about any of it, but the more I tried to push it all away, the more forceful the thoughts became. They terrified me. If I’d thought it then it might happen, so compulsive behaviours would come into play, but they had to be done in a very particular way, without interruption or questioning or else it’d need to begin all over again. When I learnt what the term premonition means, I was so frightened that I might be having them and I was seeing what was to come; I thought that maybe the only way of stopping them from happening was if I was no longer around to think them. As an adult, this is all very scary, but as a child it’s so confusingly frightening; the world is full of monsters but perhaps you are just another kind of monster.

Whilst the thoughts around being evil and needing to disappear to prevent bad things from happening aren’t anywhere near as powerful as they once were, they are still very much there, sometimes more than others. People tell me that I’m intelligent, I know that by touching the edge of a counter isn’t going to be able to stop something awful happening, that checking a switch something to a pattern of 4, or 4 x 4, or 4 x 4 x 4, or 4 x 4 x 4 x 4 isn’t going to make it anymore safer than doing it once, that if a tag is pointing outwards rather than inwards it isn’t going to mean someone is safe, that I don’t have special powers that mean my thoughts or behaviours can make or prevent something from happening… The thing is, most of the time I know that they are right, but all of the time I know that they might not be right. I know that my pillow being faced a particular way isn’t going to ensure safety because it doesn’t make sense that it would, but what if it might? What if?

My therapist once told me that she had been at a training course on OCD and the tutor had given them all a sheet of paper and a pen. He then asked them to write the name of someone they loved onto that sheet of paper, followed by ‘has been in a car accident’. A couple of people did it without a second thought, but the majority of people in that room said that they weren’t going to take part. The tutor pushed them for a bit but they still refused and so he asked them why they weren’t willing to join in, their responses were things like, ‘because it isn’t worth the risk’ or ‘I’m not willing to tempt fate’ etc. He told them that every time they ask people to ignore their OCD, they are asking them to tempt fate, take a risk and feel that anxiety of doing, or not doing, something which they truly believe can prevent something awful occurring.

Knowing something and being able to see the rational angle doesn’t mean you don’t question it or fear the what ifs, buts or maybes. I DO understand why people tell me that what I think is irrational, but I also know that when it comes down to it, the fear of something awful occurring because I haven’t undone or balanced out a thought is overwhelming; I’d be responsible. OCD isn’t about liking things to be neat, it isn’t about liking things to be clean and it isn’t about being a ‘little bit OCD’ because you use hand sanitizer before you eat a sandwich. It isn’t going on an entertainment show to clean someone’s house, it isn’t about enjoyment, it isn’t a little quirk or a desirable personality trait. OCD shuts down your life, closes many doors of opportunities, terrorises your mind, invades your dreams and takes hours of your time. It’s about intense fear, constant doubt, broken and bleeding skin from washing your hands, responsibility and guilt, obsessions and compulsions that rule your day to day life; it’s a hell that no one would desire. You can be obsessive, you can be a neat freak, you can be organised, you can be particular, you can be hygienic and you can be a clean freak without having OCD. I like things that are tidy, but my OCD can often mean things are quite cluttered, clean but cluttered. I like things to be done, but sometimes knowing that something is going to take me several hours longer than the average person to complete means I put it off, it builds up, I feel even more dread and it’s a cycle. OCD isn’t rational and it isn’t ever going to make sense because it is very topsy turvy and what bothers one will not bother another, even with one person things can differ dramatically.

Animals are so important to me, but many people will say ‘but you’ve got OCD?!’ when they find out I have had animals since I was tiny. I have a dog and he enjoys eating things I’d rather he didn’t, rolling in cow pat, sheep poop, fox poop, horse poop, well any kind of poop really, he likes the odd munch on horse poop, he likes to find muddy areas and ensure he brings enough mud and moss back from a walk to keep me busy for several hours. He needs the odd shower, he needs his poop picking up, he needs to be fed, he needs to be loved and he sits with me when I eat, he sleeps with me on or in my bed, he likes to sit on me or lie on me if he’s chilly and he spends a lot of time shoving his beard in my face. Some things I find very hard to deal with and I do sometimes panic and have to call on someone for help. I accept that I probably shower him when other people might have left him, but I also understand that dogs aren’t supposed to be showered too much and I don’t want to cause problems with his skin so I keep it in check. I know that some things people might think are okay, may not be okay with me – but then I also know that many things that don’t bother me, do bother others! I’m not as relaxed with other peoples animals, but I’m still happy to be around them and I’m not bothered about them sitting on me or licking me – as long as I can get clean!! However, touching a door handle can cause major issues and have me freaking out for ages after the event! It isn’t rational. I can eat in some places, I can’t in others. I can be okay with something one day, but I might not be okay with in another, or in a different situation, setting or time of day.

I know my OCD doesn’t make sense, I think most people would say the same, but in the moment it does make sense and the level of danger, risk, fear and threat is always very real. There’s an awful lot that I haven’t included in this because I have learnt that people don’t understand and whilst I know that people speaking up and education are the things that will make a difference; what I have written here is enough. It’s mostly lighter things, the things I’m less embarrassed about, the things I know are quite ‘normal’ and widespread amongst people with OCD.

The media puts out this message that OCD is a quirk, it’s a helpful tool, it’s great to have OCD because you will have a tidy house, that it’s really a blessing and is quite enjoyable – and the media is so wrong. It is none of those things. It is not the same as any of those things. ‘A little bit OCD’ doesn’t exist, OCD is an illness that destroys peoples lives – ‘a little bit OCD’ is having some slight obsessive and/or compulsive traits. OCD is fear, ‘a little bit OCD’ is liking things to be a certain way because they look nice. There is so much stigma surrounding mental health, please don’t contribute to that by minimising a massively complex illness that tortures so many into a slight quirk or desirable personality trait. Maybe with less judgement, brushing things under the carpet, silly comments and more understanding, a willingness to accept that OCD isn’t a funny thing to joke about; more people will feel able to speak their truth, the average and the not so average, rather than feeling the need to tell only part of their truth, the nicer and easier part of their truth, ensuring the rest remains hidden.

(Image author unknown – willing to add credit.)

OCD? – Don’t expect a tidy room!

What Helps – Support for Eating Disorders

This is an interesting piece of research that requires lots of people to be involved, so as to ensure the results are relevant to as many people as possible. If you have recovered from an eating disorder, or you currently struggle with an eating disorder then please take a few moments to fill this out. If you know someone with an eating disorder then please pass this on to them so that they can put their thoughts down. It’s all anon and no identifying personal information is required.

What helps - Support for Eating Disorders

What this project aims to do is find out what people living with eating disorders find helpful in terms of treatment and support from health services, therapy, family and friends.

The research on eating disorder support tends to be based on clinical measurements, external, and often visible and easily measurable symptoms, and not on how people themselves feel about the support they have received and the impact it has had on their lives. This project aims to focus exclusively on the experience of those living with, recovering from and recovered from eating disorders, specifically on how they experienced treatment and support and what they found to be most helpful.

To gather these experiences, a survey has been created and can be found here. It is open to anyone who has something to say about the support and treatment they have experienced relating to their eating disorder. Not all questions…

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What Helps – Support for Eating Disorders

‘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

‘They have to be ready to change..’