Tag: psychiatrist

Talking with medical students (updated)

Particularly relevantly given my previous post, at the end of this week I’m going to be speaking with a group of medical students about stigma in mental health. The local university runs several of these small group sessions through the academic year. Attending one is compulsory for all final year students. The scheme was set up by someone from the Recovery College (which I must write the promised post about!) in conjunction with the university psychiatry department. Each session is led by two people with lived experience of mental health conditions and encountering stigma in healthcare environments. I volunteered to take part through a patient involvement network.

Most of the session will be question and answer and discussion, but first I have to speak for a few minutes about my personal experiences. I can think of many examples both good and bad of care I’ve received, stereotypes that affect me and those that care for me (especially specific to BPD), times my care and relationship with services has suffered because of discriminatory practices and rules, how often I’ve felt rejected and not believed when I’ve most needed help and the long lasting effects of this; also, I want to share times that have been good, such as the empathy I met with when I had my minor op last year which helped me cope with my panic and emotional instability at the time, and the encouragement I’ve found at the Recovery College in being valued for who I am and even for what I’ve been through.

This being my first time, it’s hard to know what the students will be interested in. What will they most want to hear about? What is most important for them to hear? What will they want to ask? I’ve had a little guidance from someone who has spoken at one of these sessions before and any more suggestions would be helpful. If you can think of anything particularly important to discuss, if you have your own lived experience for instance with your own mental health or as a friend, family or carer, or if you have a student or medic’s perspective, I’d be really grateful to hear any thoughts.

Thank you so much.

Ginny xxx

24.o2.2017: By way of update, the meeting with medical students was cancelled as the psychiatrist who was due to facilitate the session was called away unexpectedly. I’m due to  speak at another session in the Spring and afterwards will post about how it went.

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My cell phone is depressed (and Catholic) – on walking through cognitive dissonance

My cell phone is depressed (and Catholic) – on walking through cognitive dissonance

Just now I was typing a text message to my friend to say thank you for a good catch up that we had a couple of days ago. Like most Android phones now (I think – dodo alert!) it not only has predictive text in terms of suggesting the word you are currently typing, it also predicts the following words (so for example, if I type “hello how” it will prompt “are” then “you” “?” and so on). Sometimes it is rather over zealous in that function and inserts words you don’t want. Or, as I said, possibly dodo alert again.

So there I am starting to write “It really was good to see you” and my phone changes it to “it really hurts”. Then tries to do it again the next time, too.

It’s not just me you see – now it’s official, my cell phone is depressed too. It’s going for all the sad options!

This made me laugh and also realise that I must whinge a lot more than I realise if it has learnt that word combination. Then it reminded me of the time a while back when I had to send numerous messages about the choir arrangements over  Holy Week* and Easter at my church, so frequently that come Easter Sunday my phone’s predictive text learnt how to spell “Triduum”* and  “Attende Domine”*. So I’ve got a Catholic phone too 😉 .

On a more serious note, this got me thinking that my cell phone mirrors what the cells in our brains – y’all see what I did there 😉 – what the cells in our brains do as we have our life’s range of emotional and interpersonal experiences. Like my phone literally expecting “hurt”, the more hurts and pains we experience, the more we can readily expect this, the more we feel it and the harder it may be to feel anything else. Perhaps the longer we’ve suffered in an abusive or otherwise harmful relationship, the more we are only able to see ourselves and others only in the light of how our reality and our identity and our relationships were in that abusive trap. It’s somehow sadly a lot easier to continue to believe a very painful belief about ourselves that we’ve always held, than to be able to dare to adopt a new belief and to tolerate the cognitive dissonance we need to go through in order to begin to switch our beliefs. It’s easier to continue to believe rubbish about ourselves that our abuser(s) indoctrinated to us, than to accept any good. We long for care and help but we may be unable to receive it. Which sounds bizarre and I hope that it does not sound offensive.

To give an example, in therapy this week I identified that I have lots of rigid and entrenched beliefs along the lines of: “if N. wanted to be my friend, s/he would do xyz” “if N. cared about me, s/he would have [replied straight away to this message because I said abc in it] and because s/he didn’t it shows s/he doesn’t care and doesn’t want to be in touch and couldn’t stand me anyway, what an idiot I was to think s/he’d want me around anyway” or “if you’re someone’s friend and they are upset you do xyz, it’s just obvious, and N. didn’t so it just shows they really think abc [negative thing / opinion that I’m evil] about me”. The thoughts that spiral from these beliefs mean that if they aren’t fulfilled and someone doesn’t do one of these things that I have set as absolutes in my mind (and which, incidentally, I would hold myself to in relationships as well, as rules I must follow as a friend) then very quickly I use them to confirm an even deeper-seated view of myself which stems from things my abuser told me. Such as that I’m evil really, I manipulate people, everyone will think it isn’t my fault but she and I will always know it’s because of how evil I am, xyz person I care about will die or be taken away because of the harm I’ve caused, I’m disgusting and ugly, etc, etc. It’s impossible for me to get past these beliefs and they are a big block in therapy and in everyday life. It’s impossible to believe that my beliefs and motivations are what I think they are and impossible to believe anyone could really want me. My cell’s predictive text is set to “hurt”.

I’m not sure how to get around this at all. I’m not sure if my psychiatrist is either. I met with her yesterday. It was a very helpful meeting and was about a lot of things other than this as well. However, I think to this there isn’t a short answer. How do I go through this? How do I learn a new setting, a setting in my mind that is open to a different belief? How do I dare to actually feel differently? I can try to explore other possibilities cognitively, but I cannot link it up to the emotions and what I really feel and believe about myself and others. I just cannot reach that. What the psychiatrist did help me identify is that only with repetition can we learn something new (as with my cell phone’s expanding Catholic vocabulary). I need to try to continue in relationships long enough to get past the point at which my default beliefs about myself as evil are (or so it seems) absolutely confirmed. Currently I don’t. Like my cell phone I go into “predictive” mode and I pull away from the interaction or even end the relationship at that point.

That’s the one thing I can change, though with a great deal of help from what I think would have to be incredibly supportive and understanding friends. That’s almost too much to ask. This is going to be a long road.

Ginny xx

*Quick (hopefully simple) explanation of Catholic terms: Holy Week is the week leading up to Easter Sunday. The Triduum is a term which refers to the Thursday, Friday and Saturday immediately before Easter Sunday: Maundy Thursday, Good Friday and Holy Saturday. “Attende Domine” is a piece of chant music often used during Lent at one of the churches I attend – “Attende Domine et miserere” or “Hear, O Lord, and have mercy”. I find it quite beautiful and relaxing to listen to.

https://youtu.be/t7Glyu7tEWU – Attende Domine – with thanks to Petrus Josephus for the video

Image from Gilmore Girls (sorry I am not sure which Season) – Lauren Graham and Scott Patterson – Gilmore Girls produced by Amy Sherman-Palladino and Daniel Palladino. All rights belong to respective artists.

 

What do you do to stay safe?

Today I’m going to the hospital again for another meeting with the CPN. I’m very scared of going after I lost it there on Tuesday. I think I’m scared what will happen, scared of losing it again, ashamed about what happened and still feeling very out of it, although not in the way I usually am when I dissociate. That gives some kind of protection. This is raw at the same time as shaken and disconnected.

Also I’ve got an inescapable question that has been in my mind for several weeks. I’m not at all stable or safe at the moment. I want to continue with therapy. I committed to the group that I’d do it and not give up. I promised to God and Mother Mary in prayer. I’ve made quite a few sacrifices for it – I don’t think I’d have had to leave my last job if it weren’t, at least in part, for my therapy appointments (though my last employer were definitely at fault too, in my opinion). I’ve seen the therapy as the only hope of learning how to get better and manage my condition. I’m privileged to live somewhere MBT is actually available (there aren’t specific PD services in all areas of the UK). I really don’t want to have to stop therapy.

However, at the moment I’m actually more unstable, at least in part because of the therapy and the emotions, memories and questions that it raises. This isn’t necessarily a bad thing. Other people tell me they can see positive changes in me, for example communicating more clearly about emotions and things that happened to me in my childhood, none of which I can yet see for myself. However I trust the people who tell me this and think it has to be a good thing. It’s another thing I don’t want to waste.

So the big question is, what to do.  I can’t keep myself safe at the moment. For example I’m “coping” by cutting, taking overdoses or higher than prescribed doses of medication, drinking* (and this really isn’t me, I do not enjoy drinking in this way), escaping from daily life by ignoring letters, calls, etc and not able to keep on top of the basics of looking after my home and myself (cleaning, cooking etc). I’m more unstable in my moods, especially anger, and I’m struggling more to hide everything to try to participate in daily life by eg going to work. Things like hallucinations or paranoid thoughts or feeling dissociated are pushing their way more into the working day.

I don’t know what to do to change this.

I’ve some hope that medication changes could help and I’m seeing the psychiatrist on Friday. But I doubt that’s going to be the only answer. I’ve tried to exhaustion (both daily and when in crisis moments like the extreme distress or wanting to end everything) the techniques I know like distraction and grounding and self care / self soothing (this latter is very hard for me to do when I feel as I do about myself). It isn’t working. And I feel that the things other people could do to keep me safe, many of which are on my crisis plan, are not happening or not working either. I’m experiencing more and more let downs where xyz help is promised then doesn’t materialise (appointments canceled, calls not returned, planned sources of support withdrawn, mistake after mistake, discharge plan not followed). Or I’m told that the help I want to keep safe doesn’t exist or I don’t qualify. What is offered – and don’t get me wrong I’m grateful that it is offered and I know it’s more than many other services provide – is not enough to keep me safe. For example when I’m suicidal a 5 minute telephone call may calm me a bit for a few minutes but an hour later in usually feeling worse than before and – this is key I think – still on my own trying to cope.

What do I do in this position? Are there other techniques I can learn to cope better? Are there other or higher doses of medications? When I so so much feel I am not safe on my own and really need someone with me (especially when I’m really distressed but also day to day because the slightest thing, as little as a letter that makes me panic or a canceled appointment,  can thrown me into extreme distress, self harm etc) what can I do? The PD service are adamant I mustn’t be admitted and don’t qualify for any carer help and ongoing support in person isn’t possible. I haven’t any other way of getting that kind of support. I live alone, my dad and step mum live hours away and I don’t have friends very locally or whom I see regularly.

So how do I do my therapy and stay safe as well? How do I either answer this need not to be on my own when I’m so much at risk and unstable, or what solution do I have to learn instead?

What do you do to stay safe between therapy appointments or between times you can access support?

I know this probably sounds silly and I do get a lot more support than most people and all I’m talking about coping with is simple daily life. Right now this is where I am.

Ginny xxx

*just to be clear, I’m not diagnosed with any alcohol problem and I’m not comparing my struggle with that of someone who is struggling with alcohol or other substance use. That is a much more painful place. I sometimes use what is probably an objectively average amount of alcohol taken with my tablets to make myself fall asleep when I can’t cope. Not a great thing to do but I’m not trying to compare the two.

I’m sorry for being rubbish this week

I’m sorry for being rubbish this week

I’m sorry for being rubbish this week. I’m sorry for being so slow to reply to comments and not being there enough for you (lovely readers / bloggers) as well as other people important to me in my life. I have been so shattered and sinking and though that’s true and consuming, I hate yet again using that as an excuse. Someone I was close to told me a little while ago that at first maybe you can hope people will understand but not after it’s gone on for years. Certainly “it” has gone on for years for me. Whilst it hurt when she said that I can also sort of see that you cannot expect endless understanding and it feels like asking more and more the longer I am not there and not well.

It is only very special and very empathic people who continue to understand and to be there. I am very very thankful for you. I care about you and I am so sorry for the times I fail to show it when I cannot write or say or otherwise show the love and support I wish I could. You mean so much to me. Thank you.

***

Also, in the past few days I have been trying to put together something in writing, a kind of open letter, about how I feel about my current care and how I have been treated by different services in my struggle to get help. I’m going to finish this tonight in preparation for, hopefully, meetings with a nurse practitioner and the Psychiatrist at the hospital this week. I think I may share some of it on here because I don’t think I’m the only person fighting the failings that have pushed me nearer the edge.

Ginny xx

Punished for hope

Go on then. Smash me into the ground and kick me as hard as you can.

That’s what they do to me.

I was promised “victim support” when I went to the police about the abuse. I was promised support from the victim support team’s specialist CPN and to finally get help with the trauma, flashbacks and PTSD. A phonecall with the CPN was booked in for today by the support team. The police officer who took my statement knew.

I got the call from the CPN who told me she is employed by the same mental health trust as the hospital I’m seen at for my personality disorder. Oh good,  I thought, that should help, shouldn’t it? She’ll know my mental health background and have my records. Wrong! She said that she’d organise support for people who aren’t currently seen in the mental health trust and get them therapy to help them deal with the trauma of what they’d had done to them but because I’m seen in the personality disorder service I’m “already in the most appropriate pathway” and she can’t help me.

But the personality disorder service specifically don’t address trauma and PTSD. The therapy I have there doesn’t deal with flashbacks, memories, hallucinations etc.  It deals with here and now. Which is great and important but leaves all the trauma untouched. I need help with that.

Why am I not allowed that because I have personality disorder, when a victim who does not have personality disorder, would be allowed to access it? Why am I denied help with one condition because I also have another diagnosis? You wouldn’t say to someone who had been in a car accident and fractured their leg as well as aggravating a pre existing back injury, “oh sorry we aren’t going to get a surgeon to set your leg to heal because you’re already being seen in the spine clinic.” So why is it deemed okay to deny me victim support because I have BPD?

The CPN said I should make a list of all my unmet needs and take it to my appointment with the psychiatrist next week. Oh my days have I not already begged for help with all the “unmet needs”! She just didn’t seem to grasp that the personality disorder service simply do not address the PTSD area. Which in itself is fair enough, it’s a specialist PD service – but it’s not okay if you’re denied access to other specialist services!

Why was I promised psychological help from this victim support team and this CPN if this is the outcome?! Everyone knew I am being seen in the PD service.

Then the CPN said oh they just don’t offer this help in the community teams. Yes and don’t you think I know, after fighting for 15 years plus. … and that’s why it’s speed to be coming from her!

This is yet another kick and yet another betrayal. Yet another thing I held on to snatched away. Yet another desperate hope gone. Yet another trick, this time effectively from the police, it feels like, though it isn’t the officer’s fault, he was nothing but supportive and this victim support team is separate…. but this is the last hope of people believing me and allowing me any help. And it’s now gone.

It’s absolutely proved everything my mother threatened. People would think the fault was hers, if they ever found out, and they’d take her away. Nobody would imagine a child could do all this. But really she’d know and I’d know that it was my fault all along, and what I’d done (and how evil I am, the voices add). I told. They found out. They think the fault is hers. But I must remember, the voices say, really it’s me all along, really I don’t deserve anything because I’m so evil. It’s confirmed it. 

It’s the hardest kick and tightest grip of the terror and memories again.

I was promised support when I went ahead to make the statement. Now I’m left and left more raw than before. I don’t regret doing it but can’t cope and I’m not okay and I’m not safe.

To top it all off I called the personality disorder service to be told there are no calls back today because the team have gone on an away day. Shame the voices and flashbacks haven’t gone on an away day. Shame the planning for how much hurt I can cause myself hasn’t.

 

How do you keep on trusting?

I’m really struggling at the moment with the fact that whenever I’m really counting on something it gets taken away. When I’m already at breaking point, things that should be simple are made incredibly difficult so I don’t get help I need or have to go through complicated, draining processes I can’t cope with.

I’m not even talking about more “abstract” ideas like complex relationships or values but very basic things like urgent appointments repeatedly being cancelled, having appointments for support booked but being told the wrong time or the booking not being made, completing lengthy forms for Benefits only for the wrong decision to be made with the wrong information, on and on. I suppose the apparent rejection, lack of care, implication I am undeserving and not allowed help, behind all this, makes it worse.

Most recently it was being discharged from 2 days in hospital after I’d overdosed at the weekend, having had a lengthy assessment with the duty psychiatrist, who discharged me on condition I would be seen by the psychiatrist at the personality disorder team the next day and my CPN within 24 hours, a report had been sent straight to them, and that I could hope for more support. So off I went to the PD team at the hospital on Monday. No report had been sent. The psychiatrist would not see me. The report has now been sent this afternoon. There is still no intention for the psychiatrist to see me despite the duty doctor and actually also my GP requesting it. They actually asked why did I think the psychiatrist needed to see me! No more support is forthcoming although I have had telephone support. The duty workers say haven’t I got any friends I could stay with to be safer. My 2 friends who are nearby have made it clear this is not possible.

There is an absolute pattern of this happening over and over, week after week. I can guarantee that if I’m desperate, just trying to hold on, relying on my next therapy appointment – I’ll get a call to say it’s canceled.

How do you cope with this kind of thing?

It feels like a cruel trick or a sick joke and spikes my anger and hurt out of control and I disintegrate and the feelings I was struggling with already explode as well.

I do not think it’s only me it happens to. In fact someone else in another online forum was saying a very similar thing and that it’s as if we’re never allowed to rest, it’s always the next test and the next thing to go wrong.

How do you keep trusting when you feel like this? How do you stop resenting and being consumed with anger? Becoming more and more self centred?

It is really hard to try to keep trusting the hospital and the doctors when I can’t count on anything and repeatedly hope then bang, it gets taken away again.

I shouldn’t put my trust in anything or anyone and I should detach from the need for it and not depend on anyone or anything. But how do we even start to reach that point?

Ginny xxx

Somehow

[TRIGGER WARNING FOR SUICIDAL THOUGHTS AND ACTIONS, SELF HARM AND OVERDOSE This post may be disturbing please read with caution if this may be unhelpful for you. ]

Somehow it’s nearly morning. Well, it is morning. I’m numb and “out of it” like it’s not really me, but everywhere at the same time. I thought I came to the end. That was supposed to be it. But I’m still here.

I’m scared to write this because it makes it real. What I did. And what is. And that I’m still here and that it’s morning. No question.

(“The watchman counts on daybreak and Israel on the Lord” I can’t remember what Psalm that is right now. ..)

I’m scared to write because I don’t want anyone to hurt and it was noone’s fault but mine and no one’s doing but mine and my responsibility. I lost it, I snapped and gave in. I didn’t deserve it but they cared for me.

I know I was so nasty to someone who has only cared for me. I needed too much. I still do. I’m so sorry.

But I have to write this. I have to write this in order to go on. I’m scared and I can’t remember chunks of time.

So…

I got to the end on Saturday. I screamed. I smashed things in the kitchen. I cut. I took an overdose. A lot more this time. This time it was the end.

But it wasn’t because I’m still here. And I have to get up soon. I have to get up and get dressed and go out and get something to eat and then go to the hospital to see the psychiatrist and my therapist. I promised I’d do it.

I’m okay. I don’t want to scare people. I’m okay physically. I got help. I’ve been in the hospital Saturday and Sunday. I came home late last night. They monitored me – blood tests and ECG and blood pressure and everything – so I’m fine physically. They were kind. They looked after me. I ate. I saw the duty psychiatrist. They’ve sent a report to the personality disorder team. I already had an appointment set with my therapist this morning and I’m to go early to see the psychiatrist too. So I’m safe. I don’t want people to worry.

I’m going on. Nearly time I can get up. It’s cold this morning. I have to decide what to do about work and what do I tell them. I’m meant to be in this afternoon.

“The watchman counts on daybreak and Israel on the Lord.” Keep saying that and get up and it’s morning.

Ginny xx

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #2

A closing drawbridge and a silent cry – Eating Disorders and Personality Disorder – #2

Protection in emptiness

Eating Disorders and Personality Disorder

Chapter 2 – My History, 1 of 2 : ages 3 – 16

In this chapter, I’m going to tell you a bit about the history of my own eating difficulties, as an overview. I am not going to go into detail of my feelings and the reasons I started to restrict or overeat at each stage, as I will go on to that in subsequent chapters.

I have done my best not to go into any detailed description of the techniques I used to eat less or conceal how little I was eating and so on, as I understand that this can be triggering for people who are unwell with eating difficulties.

It has proved much more difficult to write this “history” than I anticipated. I think what lies behind each of the periods of my life is more raw than I had admitted to myself.

Although I probably did not meet clinical criteria for an eating disorder until I was about 15, my relationship with food and my body was distorted throughout my life from preschool age.

I first knew I was “fat” when I was 3 years old. I remember vividly sitting on the stairs. It was shortly after Easter. On Easter Sunday I had been given a chocolate Easter egg with my name iced on it, and some other chocolate treats. As a typical child, I guess, I delighted in the egg. I shared it with my Nana and my parents but probably not very generously! (Typically, again, for a 3 year old.) I remember that on that Easter Sunday, I was praised for sharing. But then that day on the stairs (I don’t know how long after Easter), my mother was calling me “greedy” and shouting at me for how I had stuffed my face with chocolate and everyone else just had a crumb. I remember so clearly and it hurts even now. I remember knowing I was greedy and bad, and FAT. How exactly I knew to make that link, I am not sure, but I knew it meant FAT, and BIG, and that was bad. Perhaps I had already absorbed some of my mother’s preoccupation with food and body size.

My mother began weighing me in secret around this time, and keeping the fact hidden from my dad. (My dad recalls this and has told me about it. I myself recalled it from when I was a little older, maybe 5 years old.) When my dad found out what she was doing, he told her to stop, and she agreed, but actually continued with increased frequency and forbade me to tell my dad.

From the age of around 6, she would regularly tell me that I looked “too plump” and would send me to weigh myself and report back to her my weight. She would not believe the figure I told her and would then have me get the scales, bring them to her bedroom or the upstairs landing and weigh myself in front of her. Then she would stand me, often undressed, in front of the long mirror in her bedroom and point out the bits of my body that were too plump and too fat. Then I had to go on a diet until she considered I had lost enough weight. She did not want my father to know so I still ate the main course of the evening meal, but the diet meant no snacks or biscuits (most of the range of sweets and chocolates children ate were banned in any case) and something like lettuce and rice crackers or a small amount of plain pasta for lunch. Not the most extreme by any means, but I didn’t like it. When I got older, it meant exercise in the living room as well, sometimes with exercise videos and tapes.

I did dance classes from the age of 3 or 4; two or three classes twice or three times a week. This was about the only contact I had with other children and the outside world (my mother taught me at home until secondary school age and almost completely restricted any contact with friends or wider family members). In my classes, I knew that I was bigger than the other girls. I think partly I actually was rather a fat child and partly I was very tall for my age and so of a larger build than the other girls. In any case, candy pink leotards and tights or white ankle socks were not the most flattering outfit, to say the least!

I wanted to be little, thin and tiny. I wanted to be the smallest, not the biggest. From as soon as I could start to read (which was early, around 5 or 6 years old), I would go through my mother’s Prima magazines whilst she was asleep (there was a big stack of back issues beside her bedroom mirror).  I’d look at the pictures of the women there and, as I got older, read the diet features where you were supposed to live on grapes, yoghurt and hard boiled eggs. I remember in particular, one picture of a woman in a sparkly red dress. This was the late 80s when the extremely thin, emaciated look of models was popular, perhaps even more than it is today. I had pretty much uncensored access to these magazines whilst my mother slept. (My dad would go to work but my mother frequently would not get up until a good 2 – 3 hours or more later, during which time I’d play by myself or read books and magazines that I could find lying around.)

My mother, meanwhile, was very concerned with her own weight. She was convinced that she was fat (she was not). Her morning toiletry and beauty routine took an incredibly long time. She would spend a long time on extremely precise application of a lot of make up, then in front of the mirror looking at her body. One of her delusions with her schizophrenia was that she was being bitten by insects or that there was poison under her skin, which she would try to scratch out in front of the mirror. Her eating patterns were very irregular. She would eat nothing at all during the day and instead smoke a vast amount and drink coffee and later, wine. She would then eat an evening meal (except during the terrible arguments, when she might not even eat this). I thought that was how grown up women ate and waited for it to happen to me that I didn’t want to eat any more during the day. I didn’t have enough contact with anyone other than my mother to know that this wasn’t normal. I thought something was wrong with me that I still ate breakfast and lunch.

Food was also a big focus of my mother’s ill thoughts and actions. Arguments often started during the evening meal. If the argument (her shouting, crying, threatening and so on) had already gone on all the day until she suddenly went away to bed, it would resume over dinner on my father’s return from work. When I was older and had been out to school during the day or, rarely, elsewhere, dinner was the time for her cross-examinations about what I had done, what marks I had got, who I had seen, what conversations I had had, what I had said and what the other person had said, usually followed by a rehearsal of why that was not good enough and exactly what I had to say the next time and what the  other person would say in response.

During dinner she would watch me intently, observing in minute detail how I held cutlery and crockery, commenting and criticising and even accusing me that particular mannerisms or movements were done to punish her or because I was “pretending to be a little girl” and knew it would upset her. My father and I had to give effusive praise of every part of the meal if she had cooked it. She had a rotation of elaborate dishes. Not liking something was not acceptable. Other times she would completely stop cooking at all for months on end. The food had to be set out in dishes in a particular arrangement on the dinner table. She would eat with particular precisely repetitive actions that on top of everything else, just raised the tension to absolute boiling point. If she was eating yoghurt from a bowl (it had to be decanted into a bowl, never eaten from the pot), she would circle her spoon twice clockwise and twice anti-clockwise round the bowl, then tap it three times on the top of the bowl, before taking each mouthful. As a result, she ate incredibly slowly. My father and I had to sit still until she had finished. (Even writing this my anger is boiling!) If she was angry, or going to accuse me of punishing her in some way, her actions became more elaborate and pantomime-like. It was frightening and the spring that lived in my stomach around those years coiled tighter and tighter waiting for the explosion that came no matter what I did, anyway.

By the time I went to secondary school aged 11, having been taught at home by my mother from 4 – 11 years old, I was probably a completely average weight. I was still tall although not quite as extremely so as when I was younger. I was not particularly slim but I was not fat either.

At school, able to choose what I wanted for lunch and with some spending money for break time, suddenly I was away from my mother’s intense scrutiny of my food intake. She would always watch me extremely intently if she was sitting with me when I ate. At dinner time I hated the feeling of her intense gaze. It was strange. In other ways she almost ignored my food – for example, I got my own breakfast (unless my dad did before he went to work) and lunch from the age of around 6 years old. After her hospital admissions started I often cooked all or part of the family evening meal, when I was around 8 years old. But when she was present, she watched intently, worrying and judging and controlling.

So with this new-found freedom at school, I wanted to try all the foods my friends were eating which I had not been allowed. I wanted to eat sweets when they had them. I was hungry with the busy school schedule. The result was I did definitely have too much candy and sweet food in my diet. I ate it in secret from her, fearful of what her reaction would be.

Unfortunately, when I was around 12, my physical health problems started, first from an ankle injury and then a serious knee injury, following which I was on crutches for a long time. I have a mild form of joint hypermobility which did not help.

Not able to continue my dance classes or to join in sports or move around so much whilst I was on crutches, my weight started to go up. I yo yo’ed for a while, restricting severely when I was on a diet (drinking only fizzy drinks during the day at school and eating nothing) and at other times eating far too much sweet food. My physical health problems did not really get any better from this age and I was in constant pain in my legs and back (apart from a brief period when I was about 14).

By this stage, my mother was going into hospital with increasing frequency. When she was at home, she seemed the more angry with me. I was starting to challenge more her world that was wrapped up in the schizophrenia and closed in at home, I guess. She became angrier with me for my weight. The weighing had become less frequent but she would still call me to stand in front of the mirror and undress for her to show me what was wrong with my body. I was plenty old enough now that I did not want to do this in front of her.

Nevertheless, I did want to lose weight. I still wanted to be the thinnest, the smallest, the youngest. Over the summer I was 14, turning 15, I started to diet in earnest and this was probably the start of the longest period I had yet spent on a diet. I also started cycling into the next town, swimming, then cycling home. I had gone from being fairly inactive to doing a lot of activity. My stamina had increased and I pushed and pushed myself. I would swim 30 – 50 lengths of the 50 metre pool and cycle 5 miles there an back. Though I hated my body at this time, looking back I can see I was strong and fit for perhaps the first time. All I saw was fat, and my mother ensured that it stayed that way and commented constantly on my food combinations and portion sizes and if I went down a clothes size, would say it was ridiculous and I could not be that size, the clothes were sized wrong and I was much bigger. Nevertheless I enjoyed my swimming and cycling. It gave me some freedom to get away from my mother and out of the tiny village where I grew up. I was free of her whilst I was cycling and swimming and it was something she couldn’t take over.

When I went back to school that autumn, I was pleased with the comments on my weight loss. I continued to further restrict my food intake and fill up on fizzy drinks. I would skip breakfast, hiding it from my dad, and eat only vegetables sometimes with a tiny bit of potato or pasta at lunch time. I was in a musical production with my school, which I also loved (plus more time staying at school for rehearsals equalled more time escaping my mother). I was losing weight very rapidly now and by the time the performance came, the costumes that had been ordered to fit to me a few weeks earlier were hanging loose and had to be pinned in. I collapsed from exhaustion on one day and was so very cold and could not get warm. Although nobody appeared to notice at the time, and I certainly did not acknowledge it, I was probably entering the underweight range at this point.

I then took my dieting further and further and could not stop. My memory of this time is really not at all clear so it is hard to write about. People started to express concern – teachers and even other children at my school who normally hardly paid me any attention at all. I hated the concern and attention and was angry inside. I didn’t want anyone to notice me. I didn’t want anyone to stop me. I was fine. They should leave me alone, I thought. Nothing was wrong and what right did they have to try to reach me. They didn’t understand.

I kept on going swimming in this time, but my energy was now wearing out fast and the distances that I could swim were reducing. It was as if a switch flicked. For weeks I was able to push myself on, swimming 50 or 60 lengths of the pool despite being underweight, determined to go further and further and wishing I could keep going forever. That was safe and everything else stopped. But then within a couple of days, the power had entirely gone. I was so, so cold in the water. It was hard to move. I was being dragged down and it was so so very cold. Everything was pain and not being able to breathe. Even getting changed and getting into the pool took longer and longer and I could see the teachers watching me now. Suddenly it wasn’t where everything stopped anymore – I was being watched there too. I can still remember the last day I went swimming and the cold I felt then somehow seemed to get right inside me and I could not warm up and the feeling did not leave me for years.

I was still dropping weight and by now experiencing physical effects. Downy hair grew over my arms. I was shattered all the time. I caught a cold and cough that I could not shake and would cough over and over in the mornings waking up. It hurt. My skin cracked and split and didn’t heal. I was freezing cold and even basic things like washing and changing became painful because I could not bear taking my clothes off – partly from hatred of my body but a big part of it was the intense cold. I bruised easily. I injured my toes in a fall and the bruising did not clear up for months. I started losing bladder control, often barely making it to the toilet in time. Moving anywhere was such an immense effort and I walked more and more slowly.

Somehow this did not stop me or shock me. I brushed everything off. Nothing mattered because it was all obscured by the need to become smaller and disappear and shrink. The drive not to eat was overpowering. It was a desperate, driven, angry need.

My parents were late to express their concerns. I had done quite a good job of hiding from them what was actually going on and how much food I wasn’t eating. The illness made me nasty and devious. I did not tend to wear revealing clothes anyway and wearing more and more layers against the cold hid how thin I was.

When they did express concern I was furious. It was probably the one occasion on which they both, eventually, when I was severely anorexic, expressed unified concern for me. This stunned me. I hated inside that I was hurting and worrying them. Yet, starvation was stronger.

It was my dad who got me to admit to having a problem with my weight. He spoke to me one morning before my mother had got up and there was something in the distress in his eyes that finally shocked and scared me. I admitted that morning that I had a problem. I was 15 years old.

There were still many months before I actually began to regain the weight. During this time I suffered a serious back injury from which I still have disc damage. I was painfully helpless and I think this made me start to hate the disorder. I was walking with crutches and could not get up from a chair or out of the bath without help. The starvation which had previously protected me now threw me into far more intimate dependency on my mother than I could stand.

Nevertheless, I received very little medical input or help. My memory around this time is again very very poor. It was a really distressing time and I can remember arguments I could not cope with and immense sadness and fear and anger. I know now I was causing my parents a massive amount of hurt and pain and I feel terrible guilt for this.

My mother, in her illness, was adamant that I should not have help from the GP or specialists. My GP wanted me to attend a centre nearby for children and teenagers with eating disorders and to go to therapy and group sessions there. My mother did not want me to have this. She told me what to say to the doctor and what to hide so that I would not be sent to this centre. As she had done with the threats of her, my dad or I being sent away when I was younger, she made the idea that I might be sent away to a hospital into a terrifying thing that would destroy her and mean I was sent away from the family permanently.  She coached and rehearsed me on exactly what to say. She said that she had to be in complete control of my food.

For some reason, her power over me was so great that I went along with what she wanted me to say. For some reason, the doctor believed it. For some reason, my father did not know what was really going on.

So I didn’t get the referral. I didn’t see any specialist. I saw the GP for monitoring a few times, where I’d be weighed and spout the rehearsed sentences that would make it clear that I did not need any help and supposedly was completely in control.

What realised a few years ago, when I was working in an eating disorder service, is that at this time at the age of 15, my BMI was about 13 (I will not share my weight as I know that this may be sensitive and triggering to anyone in the midst of struggling with anorexia). I had Anorexia Nervosa so severe as to be considered life threatening.

When I realised just how unwell I was when my mother had done all she could to prevent me from getting help, my view of her started to change. I believe now that she prevented me from getting help from a specialist because she knew that if I was seen by a psychiatrist, the abuse she was subjecting my dad and I to might be discovered.

A physiotherapist I was seeing for my back injury realised exactly what was going on, I think. My mother hated her. The physiotherapist urged me to try to get more help. I was too much wrapped in my mother’s constructed world to understand what was happening to me. I could not speak outside of what she had told me to say and pretend was true.

I started to gain weight and I could walk again, but just as she said, she got complete control of me again.

This is the first time I have written about this period in my life. It is very very hard and it feels incredibly shameful. I am not ashamed of having had an eating disorder and/or still having eating difficulties. I don’t know exactly what it is. Somehow telling the story seems scary, unreal and I think part of the problem is knowing it won’t just be hidden inside anymore now that I’ve written it.  It hurts much more than I thought it would. However, I think it needs to be said. It’s almost as if the purpose the starvation served is lessened as I tell it. That probably doesn’t make sense right now but in my later chapters I hope it will.

Psychosis… trying to process that word…

I saw a psychiatrist at the personality disorder service yesterday. I’d asked if I could have a medication review and talk to someone about my fears about my hallucinations (because of the focus of MBT therapy we don’t really talk about them at length in group or regular 1:1 sessions).

I was scared why are the hallucinations getting worse and why it seemed to be getting harder to know they aren’t real. They used to be voices inside my head. Now they’re often outside and at the time they’re totally real. Only after can I work out they couldn’t have been. And I’m seeing things too.

My mother had hallucinations and I’m just a year younger than she was when she gave birth to me and after that things got really bad for her. So I was scared is the same thing happening to me at the same age?

The psychiatrist was really nice,  understood me, understood my terror, understood the frightening experiences of my childhood and she took more interest in this background than I’d expected. Which was important because it allowed me to tell her about unusual, possibly hallucinatory (is that a word?!) visual experiences as a child and the very strong imaginary world I created to escape into, away from the bizarre experiences day to day caused by my mother’s weird beliefs and behaviour. I told her about feeling I dissociate into different personalities and worlds.

Then we talked about psychosis and schizophrenia. The psychiatrist used the words psychosis and psychotic symptoms for what I was describing. I asked if she thought I had Psychosis as another illness separate from my Borderline PD. She said it is hard to separate because having unusual external experiences is part of Borderline and I could be at a more extreme end of that, worsened by stress and perhaps as therapy is opening things up. Also she thinks I had a sort of ‘propensity’ towards it as a child – I can’t remember the word she used – and this interacted with my mother’s schizophrenic behavior and the abuse to make things worse.

I knew I have hallucinations. I was scared of Psychosis. One of the drugs I take is actually anti psychotic though I didn’t realise that.

It’s still scary that the word psychosis and psychotic symptoms is used for what I have. Partly, I think this is because I fear I’m going to lose all knowledge these things aren’t real and lose contact with the world and become as my mother did. Partly, it’s saying for sure I’m experiencing things that aren’t real. And I’ve so many fears about what’s real and what’s not real. Partly I don’t know yet.

I’m holding on to what the psychiatrist said, that if you keep taking the medication you do not tend to lose the knowledge that the hallucinations aren’t real. They might even go away.

So she’s writing to my GP for changes in my medication and higher dose of the anti psychotic meds.

I don’t know what to think right now. There seems a lot to get my head round again.

Ginny xx