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.

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

‘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..’