Tears of Denial -Dissociative Identity Disorder

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Trigger warning : some people may find this post triggering please exercise self care. 

This last week in my therapy session I actually felt like I was being me, I allowed myself to be honest and say how I really believed the week had gone. I was able to say that I had messed up, not given time to the alters and how that made me feel. It was a really important session because I was able to cry my own tears, not the feelings of one of my alters, but my own hurt and pain came tumbling out.

Now I am known to be good at tears, well a part of me is as she finds it hard not to cry and yet I find feelings weird and odd, so I tend to hide away my feelings and I certainly want to mask my tears and hurt if I can. Therefore crying out my frustration and hurt wasn’t something I’d normally do and yet here I was sat in a room sobbing.

Therapy often surprises me, and this week wasn’t any exception to that rule I realised so much about me and my thinking that I hadn’t really considered. I wasn’t just messing up I was frustrated and I was ignoring my alters and why, because I didn’t want to accept the past. I ended up saying ‘it wasn’t fair’ as I talked and cried about my need for psychiatric medication and the words really resonated with me as soon as I said them, I knew they were important.

It wasn’t and still isn’t fair that I need to take medication, it started when I was young they were prescribed to help me cope. It’s taking me time to come off these meds and despite my best efforts it’s not been an easy journey. But that wasn’t the only not fair going through my mind even if I wasn’t quite being so open about it, my psychologist seemed to get that.

My childhood wasn’t fair, the fact things happened wasn’t fair, the way I’m still allowing someone who is no longer here control my behaviours isn’t fair. I kind of let out some of that pent up frustration in my tears and we rationalised things a bit too with the help of my psychologist. I needed to rationalise things it was something I really had to do, to refocus my mind and get myself back on track. Many of the ‘it wasn’t fair’ pointers relate to the past and that’s my biggest issue the past and my desire still to at times deny it’s existence.

I’m sure that I’m not the only person with Dissociative Identity Disorder who wants to deny their past, it’s easy to try and convince yourself that the alters were hurt not you. That if they didn’t exist it would all go away, not just the D.I.D but the past, the truth about the past.

You see I feel there are times when I would rather be mad, than have been abused. Times when I don’t want to accept that the people who were meant to love me, like my mum, didn’t give a toss about me except what I could give her. I wasn’t a daughter to her just an object she could control, hurt and give to her friends to entertain their perverse tendencies. I was someone who she got a lot from, but she gave nothing back too and that’s what I’m finding hard to deal with.

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Denial is the glue in dissociation, I mean I dissociated to avoid the pain of incidents that as a child I couldn’t cope with or face, I wanted to deny. The truth being without dissociating I doubt I’d be here, it would have been far to much for a child to cope with. But dissociating led me to deny the reality of my existence and that’s making it hard to take on board that pain and hurt of those times.

I can accept my mum was an awful parent, a bully and controlling and yet it’s harder to accept what I know is true, that she abused me. It’s somehow too hard to take on board without a fight.

I realised after my session that I still blame me which I know is ridiculous, I couldn’t stop what happened and I could not have changed any of it. Yet I feel guilty, I want it to not have happened so much, maybe I’d quite like to override history and change it. If it only it was that easy, we all know that it isn’t but I’m sure many victims have tried.

The sad fact is the past controls me today, my thinking patterns are skewed by the way I was raised and parented by her. I may not be able to change all of those thinking patterns, but I can learn ways to change how I respond to them. But like most things that’s going to take time, and I guess I get exasperated at the years I have wasted already never mind how much longer will it all take.

I’m having to learn to be patient, to understand therapy is hard, that healing hurts and accepting the past means grieving and significant amounts of pain. Last weekend I ignored my alters because I desperately wanted to deny my past, but that’s so unfair on them.

You see I really care for my alters, they are a part of me and I really want to get to know them and understand them. Yet I so wish my past hadn’t happened, so wish I had had a mum who cared, so wish I hadn’t been hurt in the ways I was. But the other parts of me didn’t ask for any of this either, and me ignoring them isn’t going to help any of us.

That’s why this week I’m trying to rebuild bridges and get back into the practise of giving them time and acknowledging them. I need to redress some of the things I did wrong, I need to try and do this at times difficult juggling act, to ensure I can meet our needs. There will be periods when I get it wrong, mess up again even, there will also be times I struggle with denial.

Yet it’s ok if that happens, what matters most I think is that I learn to understand me and my thinking traits and I learn to understand denial is just a part of this journey. None of what happened to me was right and I can’t just erase it, or change it but I can change how I am today and in the future.

That’s why I need to give time to the other parts of me, hence why I’m on a journey of learning to juggle the demands of many. If that means methodically stopping every so often and thinking ‘alters’ need care and time then so be it, eventually it will become more natural and instinctive. Till then my alarm will help nudge me into remembering and giving the other parts of me time.

 

copyright DID Dispatches 2014

 

 

 

My first night on a Mental Health Ward -10 years on

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Ten years ago my life changed for ever, this wasn’t a great moment of celebration, no this time ten years ago I was sent by my GP for a psychiatric assessment in Chester. It was an assessment that I really didn’t understand, I was in turmoil and a great deal of distress but I didn’t expect them to admit me. I mean I wasn’t aware of the system that operated within mental health, yes I’d seen a psychiatrist before but they never talked of admitting me. They usually gave me medication as a kind of sticking plaster to ease my symptoms and I think I assumed that’s what would happen.

Of course I was admitted after a very few prying questions into my state of affairs and self harm, I was honest I told the doctor how it was. I told him that I felt this intolerable sense of shame and guilt and pain and I wanted it all to stop, if that meant suicide then that was would happen. At the time I felt worthless as a wife and a mother so my family would in my opinion be better off without me, that was what my skewed irrational thinking had become.

In the end I recall him just saying it was probably best if I was admitted for a short while, I think I was disbelieving at first and I said no, not me, no never. I’m wasn’t prejudiced but if I’m honest I thought these units were for people who weren’t like me, you see only a few months earlier I had been working full time as a civil servant and I had a good home, family and marriage. I had been unwell for a while and my self harming was becoming an issue yet I still had work to go back too I’d only been off sick a few months. I didn’t need to be an inpatient on a mental health ward that just wasn’t for me, how wrong was I this was day one of many days and the first of many admissions.

I remember being taken to the ward and they showed me to a bed in a room with 3 others, we shared a sink between us and the toilets were down a corridor. This was an old Victorian institution and it felt eerie and very scary, the other patients were polite and observed me with a caution that I soon came to demonstrate myself. I had my favourite Ted with me the children had bought her a few months earlier and I clung to her for comfort in this place that felt so fearful, so alien, so unknown.

Back then I didn’t realise that the staff observe your every interaction, analyse it and often seemed to make wrong assumptions about me. I soon learnt that in this system I didn’t have rights, and holding an opinion was unacceptable especially if it wasn’t on the same wave length as the psychiatrist or his team.

I know that I didn’t sleep that first night, I think I wanted to just hide away but there wasn’t anywhere to hide, how do you deal with a memory or a flashback in a room with 3 other women. The staff expected me to sleep, I hadn’t slept properly for weeks and I was never going to sleep when male patients were literally just down the corridor and could so easily wander into the female bay. But they still expected me to sleep and kept checking every 10minutes to see why I hadn’t got to sleep yet.

If someone a stranger was walking up to your bed every ten minutes, in a strange place would you sleep, I doubt it. It wasn’t like they were quiet, they’d pull back the curtains that screened the beds,  old and stained curtains that didn’t move freely and they shone a torch towards your face. Even if I had managed to fall asleep they made so much noise and disruption even the worlds best sleeper would have woken up and I wasn’t the best sleeper.

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The rules and regulations of a psychiatric ward were odd and I really couldn’t comprehend them, they seemed draconian at times and unfair. We could only have hot drinks certain times of the day, and you had to queue for your medication in a way that resembled being back at school. The staff expected you to sit in the day room and not on the chair in the corridor, when I asked why I was told that was just the way it was.

I realised they didn’t like my response which was ‘well why have the chair in the corridor if patients can’t use it’, when they marched me to my bed area to calm down and said I was being awkward and unhelpful to my recovery.

I’m sure the staff wanted to be helpful, I’m sure they all started in their careers with good intentions at heart, yet they didn’t see patients like me as an equal human being with rights. I was no longer an equal I was the person who they were tasked to keep safe and to deal with when I got upset or failed to comply. The threat of being sent from the ward to the PICU (psychiatric Intensive care unit) was immense, those who went there returned with the stories of forced injections and worse.

I had witnessed my first restraint process on my first night, though not on me it was terrifying in its own right to just witness. The brutality and the fear was palpable and the girl cried out in pain when they injected her, I remember I wanted to rush in and help her but there were lots of them and they were forceful and strong. So I sat cowering in fear on my bed thinking what have I come too, who are these people I thought they were meant to help people.

That first night was tough, but in truth it wasn’t the hardest night I faced in the mental health system, but at the time it was because this was all new. I had no idea that night of what was to come, the misdiagnoses, the medication doctrine, the medicalised model that forgets to look at the individual, the whole nightmare of revolving door admissions and secure services.

You see ten years ago began a journey, a journey that led to nearly 1,400 days or 200 weeks of being an in-patient, it has changed me for ever. I will be forever scared by some of the things I witnessed and was subjected to, my views of psychiatry have been changed too as have my views on those who like me are mentally unwell. That night was the first night of a journey of many nights, a journey that I wouldn’t wish on my own worst enemies.

Ten years on I can say that in my case I don’t believe any of those nights helped me, yes I did get an accurate diagnosis but it took years to achieve and for someone like me with a Dissociative Disorder and a trauma background the impact was huge, too huge and far too damaging.

Copyright DID Dispatches 2014

 

 

Messing up – life with D.I.D

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Trying to do normal life can be tough some days especially when focusing upon one task impacts on the rest of my alters. The last few days I have been attempting to complete a specific piece of work, its something one part of me is really interested in and it’s taken a significant number of hours and it’s meant I have neglected the rest of my alters, the other parts of me.

Normally each day I juggle the needs of all of me, now I’m not perfect and I can mess up yet it usually works itself out. If I watch cartoons; something my little parts of me enjoy, then I can usually get the time when I’m around to make an important call or pay a bill. Now it is a struggle and I have to really think about my alters in order to not neglect their needs, but we are working at giving them all time. In recent months I have also found that internal dialogue is vital, it is so helpful but it doesn’t come naturally and so again I have to really purpose myself to doing this on a daily basis, you see in recent months I’m learning that these things help, and so it important to all of me.

Yet there are days like in the past few that I forget everything I have learnt and make a complete and utter mess of living life as a multiple, someone who has many parts. My attempting to focus on this one piece of work means I have neglected to do the things which help me most. The reality is that I struggled to complete the work, I know I lost time and switched in the process and I really didn’t plan ahead or organise myself very well.

The fact that I neglected my alters has had huge consequences, I don’t think I have slept before 2am any night as once I stop my head is so frazzled it can’t switch off. My alters seem to be waiting for the sign and before I know it I’ve lost myself and they take control. I have apparently watched some junk cartoons these past few days alongside other programs but at stupidly silly o’clock. My alters are taking their time but when I should be asleep, when all of me should be asleep.

I have had more disrupted nights, chaos seems to reign in our life currently and I’m as confused as ever about everything and anything. I know it’s all because I haven’t used the techniques which help us but knowing that doesn’t make it right. It’s as if I have just taken one giant leap backwards and that makes me feel a bit of a failure.

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I am dreading my Therapy appointment, how do I explain to my ever patient Psychologist that I just haven’t managed to put into practise all the helpful techniques we have spent the past few months working on. Will he understand or will he judge me, and if he does will that be as much as I think I am judging myself currently, because I am really unsure how I’d deal with that. I’m already feeling guilty, I am self critical as ever and I feel sad that I got things wrong on this occasion.

If I’m honest I have messed up, yes the work is important but then so is my recovery, so are all my alters and yet it seems I can’t have both. There has to be a better way, I just don’t know how and I so desperately need help to understand what I’m doing wrong.

I want to get things right, I want to be able to live with D.I.D and survive in this world and most of all I don’t want to be feeling like I do right now. This women who can’t juggle her needs, who can’t function as I wish and whose past is still controlling my present.

If I want to recover and progress I realise that I need to redress the way I work and balance things better, but that won’t be easy. The part of me that enjoys work and studying has had so much of our time, whilst the rest have suffered and I can’t allow that to continue. I tried internal dialogue this morning and it felt empty, as if no one was listening, maybe that is just my assumption and they were. But I feel as if they have stopped listening because I stopped giving them time and an opportunity to know about our days. I’ve batted down feelings from them when in truth their feelings are important and should be recognised.

I guess juggling the needs of my alters is a learning curve and whilst sometimes I get it right, there are times like the past few days when I get it wrong too. Life with Dissociative Identity Disorder isn’t easy I’m trying to live a pluralised existence in a non-pluralised world.

copyright DID Dispatches 2014

 

Anger, hurt and frustration

 

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Trigger warning. Please be aware the content of this blog may trigger some people.

Over the past few months I have slowly become more aware of some of my alters; the different parts of me, it’s an interesting journey of discovery. But this past week I have had to face up to the reality that at least one part of me is angry, and contains anger that frightens me. I discussed this at my therapy session this week in the hope of trying to understand more about this part of me and why they are angry.

In fairness to the alter I have to say that the anger isn’t aimed directly at anyone, it builds as a result of incidents that cause us fear and hurt. The outcome is that this part of me vents verbally the frustration we feel, though the venting isn’t done towards any individual it’s more an outburst verbally of anger.

In the last few months there have been three incidents of verbal venting and all have occurred around my eldest son who is 26, he isn’t the cause of the anger or frustration that we feel. Unfortunately he just happens to be around when it becomes too intolerable to contain anymore and this part of me takes control and out comes the rage we feel. These incidents have lasted no more than a few minutes each time and yet the aftermath is huge.

The last incident took place last weekend and I am told that the children could tell it was brewing so were well prepared. I had no idea at all that the frustration, upset and hurt that was inside of me was coming to the fore and was about to pour out in a verbal venting that wasn’t nice for them or me.

The moment I exploded the words poured out of my mouth in one long verbal rant and I was aware this was happening and yet had absolutely no control. Immediately afterwards I felt wracked with guilt and sorrow, I hated the fact I had lost it and I hated that I couldn’t control this angry part of me. I was also so concerned about the children my son and my daughter witnessed the last incident and they didn’t deserve this it wasn’t their fault. They tell me they are fine and can cope with this, but I still worry about them.

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My frustration had been building for weeks, I had been hurt by someone and that hurt and betrayal felt horrendous and despite trying to deal with it I obviously hadn’t. For me the fact we felt betrayed, let down and hurt was really difficult and the pain and anguish that I felt just didn’t go away. The difficult part was a number of parts of me felt this hurt and so I wasn’t just carrying the hurt of one but of many and that was hard.

I have been trying to rationalise my feelings for a few weeks now, telling myself that it was ok to feel this way and I’m learning that I have every right to feel hurt. I have also spent time trying to tell myself that none of this was my fault because it wasn’t and yet the person who hurt us had tried to put the blame on me. Now for most people when someone tries to blame you for something you haven’t done, you can just bat it back and refuse to accept the persons attempt at transferring their guilt onto you. Sadly for someone like me who has been through years of abuse it’s not so easy, my default is to take the blame.

I didn’t realise this until recently, but I’m good at self blame, I’m good at taking responsibility for things that aren’t my fault and I’m learning why. As a child and into adulthood it was common for my main abuser to put the blame for everything onto me. I was the bad child who would get locked up if I told about my abuse, it was after all my fault or so they told me. I was also the child who was always getting things wrong, upsetting them and making them angry at me, thus justifying their physical abuse inflicted on me.

Things didn’t improve as an adult this main abuser would still tell me that every thing that went wrong was my fault. When one of my children was diagnosed with an autistic spectrum disorder, I was constantly told by them it was punishment for me being a bad person. When the car broke down that was my mistake too I must have driven it badly, I was so bad at everything. The sad fact is that at the time I believed them, I was so used to their constant put downs that it didn’t matter how much others would counteract their lies, I always believed them.

Hence my default position is to take the blame because well that’s just how I have become wired over the years. Its taking time and a lot of patience from my psychologist to get me to stop being so self critical, and to think about blame. So when the person who hurt us tried to transfer the blame too I think initially I took it. It was only as time has progressed and I have carried on working at rationalising this incident and their betrayal, that I have accepted it wasn’t my fault.

But of course I hadn’t dealt with the pain and hurt I justifiably felt, until it all became too big to contain anymore and then the part of me that gets angry did just that. I spoke to my psychologist about this anger and how it made me feel and we talked about how everyone has an angry side, they just vent it in different ways. Perhaps they kick the wall or slam the door, people have different ways of letting go of their hurt or anger, I’m just learning about mine.

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I now realise that as a child I bottled up my anger, it wasn’t safe to show it or let it out. I can recall that on one occasion I tried to tell my main abuser how much I hated her and that she was nothing more than a big bully. I recall I lost out big style, and was sore for a few days afterwards as she and my brother gave me a beating. The beating was to teach me a lesson they felt I needed and I guess it worked, I never dare express again my anger or hurt.

I lived with anger all around, my main abuser would get drunk and explode with venom at a moments notice. Though to be fair she didn’t need the drink to make her do this it was part of who she was. I grew up soaking in all this anger, this rage and I contained anger and rage from the times I couldn’t express my hurt, pain and frustration too.

It is no wonder there is apart of me that finds it hard to contain her feelings of hurt and frustration and who at times loses control and vents. Of course now I want and need to work through all this anger, not just the present day stuff but the past too. The good thing is I feel guilty when I have lost control and vented, and am I not venting directly at people, so there is hope.

This week when I have felt my frustration levels building I have taken myself off to my room, sat quietly and talked internally. I’m trying to tell all of me that it’s ok that we feel hurt, it’s justifiable and it’s ok to vent if we use art or some other safe means. We are coming to terms with the fact anger is an emotion like many others and it’s ok if we use it well, I’m 48 years old and just learning it’s ok to be angry.

Maybe that’s the reality of being a survivor of childhood abuse, the reality of Dissociative Identity Disorder is that I’m just learning to live, live with all my parts. The part that feels angry isn’t bad she just needs time, patience, space and I guess lots of loving, of course I need to give that loving or self nurture to me because this angry part is a part of me.

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Copyright DID Dispatches 2014

 

 

 

Taking Control of my Own Care -Direct Payments

 

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Yesterday despite feeling nervous I found myself sitting in an hotel lobby area trying to look relaxed and focused as we interviewed the two candidates selected to attended. I think the hardest thing for me was trying to explain what my needs are, and the reason I need support.

How do you explain in a very brief time frame about Dissociative Identity Disorder without giving prospective support workers too much detail, especially when few have heard of DID. It’s funny but I can give a presentation on my condition to a room full of mental healthcare professionals and it doesn’t daunt me, but in these 1-1 interview situations I find it quite daunting just trying to explain what DID is.

Maybe that is a result of my own fears about stigma, in a room full of people I know that even if someone holds biased beliefs about Mental Health I most probably wouldn’t notice. The sheer volume of people is in a way a protective barrier from the stigma that some people hold, there’s a comfort in knowing I will always find someone in a room full of people with some form of mental health issue themselves, so an ally against any skepticism and stigma.

Yet I find on an individual basis I am more likely to see the stigma if it exists and I find difficult, I guess it makes me feel more vulnerable. It is not easy trying to explain to random strangers who have often no interest in DID, that my mental health is the result of trauma and the reason we have care needs.

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The people we saw yesterday were both really nice, but one of them was more willing and open to finding out more about my diagnosis. They spoke to me and my daughter who acts as the employer in respect of my supports workers; she basically manages the direct payment paperwork,  on equal terms. I didn’t feel like I was being judged, stigmatised or treated as different in fact I felt a sense of equality that is often hard to find even at conferences; where both professionals and experts by experience are present.

The end result of the morning interviews was I thought I had at least 1 potential support worker, but I couldn’t just make the decision. I spent a few hours talking internally ensuring that all of me were happy with the decision we wanted to make, it’s crucial as this person will spend hours in our home. Support workers help us so much and yet they see us when we are both good and bad, they will be around when I’m overwhelmed, sad, upset, tearful and many other emotional states too. They see inside my world and know a lot about me, I need to be able to trust them and also feel safe around them it’s a crucial decision.

In the end we made a decision and have offered them a post, I always dread this offer bit as in truth they can now reject us and yes it has happened and it hurts. Thankfully the lady in question said yes and subject to all the checks that now have to be done, she will start working with us soon. I’m glad we have found a suitable person, and I’m sure we will get on fine and soon settle into working together.

Of course we needed 2 staff and there were other candidates, I can’t as yet decide on the others so have further work to do before making a final decision, it maybe that we have to do further interviews I guess only time will tell.

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The concept of Direct payments is a good one, it gives me and my family the ability to control who cares for me, and put us in the driving seat of these decisions. Prior to direct payments care agencies or specific aftercare companies chose who came into our home, they dictated what happened and when. It felt as if in a way I was still in hospital lots of control, rules and regulations, they’d write copious notes about us and I wasn’t allowed to read them. If I had issues with anyone I would have to go through the various company protocols to raise them and I often felt judged.

I have had some really good support workers, dedicated professionals who not only empower me but treat me with dignity and respect. Some have stayed a while whilst others have been with us for only short periods, I felt proud when one of them left to become a psychologist I knew she’d be great and another went off to university because her time spent with me inspired her to achieve.

But sadly I have had those who have failed miserably too, I had one person who would walk into my home, put on the radio and fling open all the windows even if I was cold. When I complained I was seen as the problem, no one understood this wasn’t a working environment to me but my home.

At one point I had staff 24/7 so night time support was the norm, more than one support worker felt it was ok to sleep and snore loudly on a waking night shift. I was awake because of their snoring and yes I can laugh about it now but at 3am in a morning following an horrific flashback It wasn’t funny.

Care agencies are run for profit, in my opinion they put additional barriers between the client and the support workers. Direct payments have changed the way my care is delivered and it’s working better, the interviews are taxing but they provide us with opportunities too. For now I feel in control of my life and that is simply amazing after years of being controlled.

Copyright DID Dispatches 2014

In Search of Support Workers.

In Search of Support Workers.

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Monday I am interviewing staff for the role of support worker, someone to help me deal with day to day life. This isn’t just an average job, it is a post in a constantly changing environment that will demand adaptability, organisational skills, tenacity and bucket loads of patience.

Finding staff, is never easy but when you need someone who can adapt to a variety of alters, be supportive yet at the same time be encouraging and empowering the task is huge. I don’t just want to employ a person who turns up for work on time and does a good job, this person is critical to how I live my day to day life.

I’m not sure if there is ever a perfect person to be a support worker, but I feel like I’m searching for perfect all the same. I can’t afford to make the wrong decision, this individual will be in my home a significant part of my week and they need to be able to fit in to my day to day life. I need them to not judge me or my alters, not to aggravate or trigger any one of me and maintain confidentiality at all times.

It feels a bit like selecting a child minder/nanny for your children, it’s scary and daunting all at the same time. Not only do I need to like this person but my younger parts will need to trust them and feel safe as well. Hence its a huge decision selecting support staff and it’s not one I ever look forward too.

Interviews are strange things whichever side of the table you sit, candidate or interviewer such a lot rides on the outcome. This afternoon I sat and thought about the questions we would ask, thinking at the same time will this enable me to have sufficient information on which to base a decision. There are questions to glean if they have any understanding of mental health issues or if they know anything about Dissociative Disorders. The hardest task is often that people hold stigmatising views, have a lack of knowledge or understanding and know absolutely nothing about Dissociative Identity Disorder.

Often we have in the past had to explain what this complex much misunderstood condition is, how it impacts our daily life and what are fluctuating needs are. There have been times in the past when recruiting that we have found prospective candidates misunderstand D.I.D and are afraid that as I have differing alters, that means I must have four heads!

Of course when it comes to making a decision on suitability I cannot do this in isolation, this has to be a joint decision, it needs to be one that all my alters are happy with. How you get a joint decision is anyone’s guess, I know I need to seek feelings from the alters, the other parts of me. I need to listen and interpret those feelings ensuring that I take account of all the different alters, but believe me that alone is no easy task.

Currently we are struggling without a support worker most of the time, it’s been chaotic and we have found it tough. I also know we are hibernating more, things are slipping and it’s impacting upon my family who are having to try and support us in the interim. Support staff are a key part of our ability to cope with day to day life right now, they are an integral part of our journey of recovery. This decision is significant and it is crucial that it’s right, bad support staff don’t help, they don’t just hinder they can be detrimental to our health.

Ever since we left hospital we have required some form of support, it’s less today than when we first were discharged and one day I hope we won’t need them at all. But after years of trauma and abuse and the damage caused by prolonged time in the revolving door of mental health inpatient services we have been left traumatised, deskilled and institutionalised. So the person or persons who work at supporting us are important and the interview process well it’s just a fact of life right now, something we have to face every once in a while when staff leave.

Now I’m not sure if the candidates I will see are going to be suitable or if they are, will they once they know my diagnosis want to work with me. The reality is that whatever the outcome I know it will be a testing time for us because so much is at stake.

 

copyright DID Dispatches 2014

Pillow fort days -life with Dissociative Identity Disorder

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I write this sat in the sunshine at an historic Welsh Castle which is quite a nice change for me, I know parts of me finds sitting in the sun difficult though I’m not fully sure why. I think that I find it difficult if I’m honest, I have never felt comfortable being in the sun, maybe because as a child we didn’t get the chance to do ‘normal’ activities like this very often and so it feels very alien and odd. Just being is a strange concept really, I haven’t enjoyed activities most people would take for granted, I used to find taking the children on picnics difficult, I couldn’t engage like other parents. My children did things like that mostly with other family members and not me, I wasn’t able to engage, to be a part of those carefree things families are meant to do yet here I am forcing myself to sit in the sunshine, let me explain why.

It’s been an interesting few days as I try and motivate myself into keeping going and not retreat to the security of my pillow fort on my bed. Truth be known we encounter periods like this without warning and they always catch me off guard this weeks has been really hard though. My mood and my motivation fluctuate depending upon which part of me is most evident and this can be frustrating and also draining.

Earlier this week I had a part of me that seemed present only first thing in the day, I would wake early, feeling really happy and over enthusiastic. My keenness to do things was odd I was whizzing around as if in a whirlwind, I wanted to do things that I normally wouldn’t want to. I felt like I was in superwoman mode a bit and I felt great, I wanted this euphoric feeling to last forever, I wanted to keep all this energy. Each day this euphoria lasted until mid to late morning and then suddenly depart from me, I’d feel myself plummeting into the depths of darkness and I realised I most probably had switched alters.

Suddenly what seemed easy was a chore, I just wanted to hide to hibernate from the world and I couldn’t explain this to anyone. The highs were high but the lows felt even more dark than normal and yes it’s so hard to deal with this. My family were supportive as ever, but I was just getting frustrated, annoyed with me, all of me for this sudden drop in mood. The end result of all these mood changes has been days of two distinct half’s, the mornings hyper whilst the afternoons were desperately sad and lacking in motivation.

These two particular shifts in mood are stark in contrast yet my reality is a constant shift in moods as I switch from one part of me to another, often they are so subtle that I hardly recognise them. I guess I do but they don’t stop me getting on with my days and they don’t upset me as much as the past few days.

Sadly the huge highs and lows are too extreme to not go unnoticed and the impact they have is much more evident. Currently I have limited support as we are down one support worker and my family who are trying to cover have been busy and unable to be around as much as they normally would. We totally understand why and none of the difficulties of the past few days are their fault. We wanted to try and prove we can manage, but the honest reality is this week some days we aren’t managing, we are barely surviving.

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Yesterday we struggled to get up we couldn’t face the day, after about an hour we realised we were losing the battle our mood felt awful, instead of being able to keep going we hibernated. We retreated to the safety of our pillow fort by mid morning and stayed there till mid afternoon, my son was trying to help us he kept nagging away at us to have a drink, to eat, to try again. In the end I persuaded myself to get up only to attend a pre-arranged appointment, it was the hardest thing to do and I felt terrible.

I know if it had been my choice we would have stayed in bed, safely secure away from everyone and from my feelings. But when someone is coming to your house to collect you and you know that you can’t hide then you kind of know that you have no choice. To be honest by the evening I was glad I had gone but it still felt hard to get enthusiastic or engage with things.

This morning after a few hours sleep I woke up and initially I did the pillow fort hibernation again, then I realised that I am being unfair on the parts of me who don’t feel so down. The parts who desperately want to engage with life and keep going, those parts who are eager to explore life and feel safe too. Some parts of me hate my bedroom, they hate the concept of bed and yet here I was forcing us to stay in the place they fear.

Hence in order to avoid the chance of me retreating to bed having prised myself out of the sanctuary of my pillow fort we have come out with my son. It’s my only chance of staying out of bed, I know if I had stayed at home I would by now by back there safely hiding in my pillow fort.

Instead I’m forcing, yes forcing myself to sit in the sun, it feels uncomfortable it doesn’t feel great, but I have to keep telling myself that parts of me will be glad. I’m sitting in a quiet spot in the sun and trying to avoid all the other people we see, I don’t want to be sociable, I don’t want to engage with the world that’s around me. But I am trying to make an effort for the other parts of me, it’s my attempt at giving them a chance to not suffer because of how I feel.

I still don’t know who this depressive low mood belongs too, is it me or an alter, I guess it doesn’t really matter because the mood impacts all the parts of me. That’s the thing with Dissociative Identity Disorder whatever my alters do, whatever those different parts of me think or feel it impacts everyone. There is after all only one body, with a multitudes of fragmented parts fighting for space to be, fighting to exist side by side in a world that for many of them feels alien and frightening.

Copyright DID Dispatches 2014

 

What ifs, negative thinking & self blame

 

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Please be mindful that this post refers to psychological trauma and as such maybe triggering for some people.

This week I am slowly realising the damage of my past, it seems that I have inbuilt automatic behaviours that stem from my childhood. These behaviours still impact today and it is really annoying at times to realise that I do this and it seems so unfair that people can still cause me problems even though they are no longer around. The reality is of course that it’s not the individuals that cause the issue but the legacy of their psychological abuse that they inflicted upon me.

The damage from psychological abuse is often unseen by most people but it has left me with a lot of negative behaviours and automatic thinking patterns that really cause us issues. I naturally blame myself for everything that goes wrong, I can’t stop being self critical and I seem unable to stop the worry and anxiety traits that plague my life. I’m also naturally inclined to try and destroy any good feelings I have, in the hope that if I get in there first I’m protecting myself from others hurting me.
I’m told that this is a natural inbuilt protection mechanism I have developed because of the way things were in my past.

At my therapy session this week my psychologist was able to define in very brief terms how things were in my past. How good things didn’t last and would be taken away from me by my abusers, how I was blamed for everything and how they’d put me down and make me feel stupid, inferior and guilty. I don’t think I have told him yet what it was really like and yet he seemed to instinctively know the realities of that time. It’s strange when other people tell you about your life and they get it so right, especially when you know you haven’t told them, I guess that’s the sign of a good psychologist.

The harsh reality is I was; like many victims are, made to feel that it was all my fault, if only I hadn’t got them mad then they wouldn’t have hit me, If only I hadn’t disobeyed their rules then they wouldn’t have had to punish me. But the honest reality is that I didn’t do anything to make them mad, they were just wanting an excuse to inflict violence upon me. Disobeying them was inevitable because I was put in so many no win situations, for example you can’t help make a noise if people are hurting you.

I was sadly surrounded by some very controlling people and they were happy to inflict upon me things that shouldn’t have happened, none of it was my fault and I accept that. Yet if things go wrong today I instinctively still blame me, it’s an automatic response which irritates me and causes me much distress. It’s the same with when something good happens, I start to try and undermine that by negative behaviours and thinking, Why? I am only hurting myself and yet I do it without even realising that I am, that’s so bizarre.

Take for instance my psychology sessions the appointments are progressing really well, which is great and yet I have started to worry about them. I know I’m attempting to protect myself because I automatically think good things won’t last, but it’s still annoying. After this weeks session I got myself in a bit of a worry mess, the kind which could easily escalate into serious irrational thinking and worse. I did that ‘what if’ thinking which I am not sure if only I do, or if others do too but well I do it really well.

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So by midnight on Monday I had a list of what ifs about therapy, about my CMHT, my ongoing care, funding, you name we had it. I realised thankfully that I was ruminating and being illogical and probably irrational too, so I decided to write it all down in order to give myself a chance of getting some sleep.

But my ‘what ifs’ remained the next morning and they filled up part of the day too, all the time I was feeling guilty for being like this, for allowing my past to impact upon me in this way. Anxiety and worry are awful, they tire you, draining every ounce of energy, they are all consuming and they can easily take over your life. The guilt and blame game was playing in the background of my mind, I knew this was wrong yet I could not seem to stop it. I guess I am a work in progress, with a lot of work left to do.

Looking back today 3 days later I can see that my what ifs list was quite funny, it contained so many things that I know I don’t need to worry about. I am certain it’s progress that I am starting to realise instinctively that I’m doing this unhelpful thinking yet I would much rather not do it at all. I know it will take time to change my automatic responses to day to day situations and I am keen to change these habitual patterns.

The most important thing right now is to realise that not everything good will be ruined by others, and that I therefore don’t need to ruin it either. Nor do I need to be self critical or blaming, and when I am I need to correct that thinking and tell myself it’s just my past trying to take hold of the present.

The good thing is that when I have therapy my psychologist will remind me of this and will keep plugging away at helping me change the habits of a lifetime. I’m grateful therapy is working and I’m grateful I can see when I am trying to destabilise it in my mind, because that gives me an opportunity to correct my thinking and reassure myself things are going ok. I can also seek reassurance from my psychologist if needed and at times I do need external assistance to retake control and stop the worrying and what ifs.

Thankfully the psychologists’s efforts and my own new found growing ability to challenge my thinking allows me to keep working at moving forwards and that’s what matters the most.

 

Copyright DID Dispatches 2014

 

 

Accepting the diagnosis of Dissociative Identity Disorder

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Trying to come to terms with my Dissociative Identity Disorder is not always so easy, the harsh reality is of course I am more distressed about the ‘why’, than the alters. The ‘why’ being what caused me to have D.I.D, the fact is it’s not very easy to accept that I was abused and hurt nor is it easy to accept that I switch between alters, lose time, find myself in places when I don’t really remember how I got there.

Feeling confused, anxious and overwhelmed by my emotions and the complexities of D.I.D is all a part of my life now and I am slowly getting used to this diagnosis and who we are.
I realise that the past has shaped who I am, it’s led to negative thinking patterns and patterns of behaviours that are at best unhelpful and at worst self destructive. It’s also left a huge amount of pain, hurt and anguish which is not so easy to come to terms with.

Today I am having to face up to some harsh realities, the dawning realisation that I am somewhat different from many people who I might pass in the street. I have a condition that isn’t my fault, but which currently governs my life and impacts us in so many ways.

The diagnosis of D.I.D came just over five years ago, it wasn’t a label I understood or knew much about and yet by the time it came I had all the symptoms and yet I refused to admit I recognised any. I was switching but I didn’t see it, I didn’t understand that I was this person who suddenly became totally different. I can recall being in hospital and having arguments verbally with the staff as they told me I was angry and yet I didn’t feel angry, or I had done x,y or z and yet had no recollection of it so would deny it. Of course I wasn’t really aware that I was switching and if I was I guess I had an in built defence to be blind to the fact.

I would find myself in unusual places and couldn’t work out how I got there, I’d think I was losing my mind for not remembering. I would often see things suddenly get bigger, the people around me, furniture, other objects and I would feel unusual, more timid and afraid. I never thought I was switching alters or losing time, it didn’t figure in my thought process at that time if anything I really believed people were lying to me and that I was going mad.

I was asked once by a psychologist to sit and think with her about the different me’s others were seeing, and we used magazines to help us formulate a picture of the various parts that people around me were recognising. At that time she didn’t refer to them as parts or alters, just what did I think others were seeing, she steered me a little into thinking about what others had been saying but not in a way that made me feel I was being pushed into a new label.

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I had no concept of Dissociative Identity Disorder I hadn’t heard of it, though by this time I now know I had completed at least 3 dissociative screening tools and scored rather highly.
The professionals had already made up their minds but I was just refusing to accept that I switched, or was anything other than mad, bad or different.

The original list of parts were a little toddler, a young child, a teen who got angry, and 2 adults, I think I still have the collage we made somewhere hidden in my loft. Then she left me with the task of thinking about who it was others were referring to when they pointed out I had switched or had done something I didn’t recall. It was a strange eye opening concept over the next few weeks as I began to realise that I had lost time, that I found myself in positions only a child would sit in, or when things felt big I felt small. But even then I still tried hard to deny any of this notion that I was actually the one being small, angry, confused and a multitude of other things too.

By the time they suggested I was formally assessed and the psychology professionals said they thought I had D.I.D, many months had gone by, staff and patients had seen different parts of me which I still didn’t see. I was confused, I felt perplexed and I felt as if I really didn’t know where time has gone and yet for the most part I was just blind to this chaos going on in my life. It was impacting me and yet I couldn’t accept I was unaware of what I was doing for chunks of each day, I wasn’t willing to accept that I became little and child-like, or angry and moody like a teen.

Yet in the wait for that assessment with still no understanding of dissociation or dissociative disorders I had started to recognise some things, but I didn’t want to tell anyone. I mean the fact I a grown women wanted to skip outside, or play on a swing was silly wasn’t it? I had caught myself colouring one day, well I came too and there were the crayons and the picture. I had found myself aware that I was doing some odd behaviours for an adult women, I didn’t have feelings as such but I experienced odd little snippets of emotion, so I could tell I had been angry by what I’d written and yet had no concept of writing it. It was strange, confusing and complex and I wasn’t willing to share these experiences with people, I really felt I was mad, truly truly mad. I imagined they’d lock me up forever if I admitted what I thought was happening, and yet here I was in a locked secure ward scared and afraid already.

When I was assessed I tried really hard to stay me, to not lose time, to give nothing away, but of course I did lose time and I switched. The specialist Doctors knew what to look for I guess and despite my best efforts they got the real me, the me that has Dissociative Identity Disorder.

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One specialist well he called me ahead of our appointment a number of times and by the time he came he’d apparently spoken to at least two parts of me, I had no idea that this had happened but it helped him in his decision. He completed the SCID-D apparently and yet I didn’t realise that at the time I just knew he seemed to ask lots of questions that seemed odd and times very irrelevant, or just plain nosey.

The other a forensic psychologist spent hours with me, over two full days he saw me for about 18-20 hours. There weren’t breaks other than me walking to and from the medication room and bathroom stops, it was persistent, draining and demanding work. He tested me with a plethora of psychological assessments the SCID-D included, he asked me questions and tested my memory which all felt very odd and at times annoying. I guess because of the lack of breaks and the pressure of all the tests I switched, lost time, and he saw the real me. I can recall him telling me my answers had changed since we had done this particular test before, yet I had never seen or done this particular test before and I argued with him.

Looking back it all makes sense but then it made absolutely none, I can recall being given the diagnosis and thinking these professionals are stupid, they are mad, they don’t know what they are talking about. I rang my daughter expecting her to understand how stupid these Doctors were, instead when I told her she just said ‘That makes so much sense mum’, ‘ now I understand why my childhood was so chaotic’ I recall hanging up on her in anger and frustration and crying.

Just over five years on and I think I am now accepting of the diagnosis, yes I have D.I.D, I have parts, I’m fragmented and I have had a difficult past. But accepting doesn’t mean that I have fully dealt with the ‘why’, It’s full of grief and hurt and pain and so in my current psychology sessions I am slowly coming to terms with this ‘why’. I believe it’s a work in progress and all of me has a long way to go to fully comprehending the harsh realities of my life. I am in the first phase of therapy ‘stabilisation’ and I have a long road ahead of me. It has taken me a very long time to get to this place, to the point were I now at least accept in an non-emotional way the past but I think the journey to fully accepting and dealing with the grief is still ahead of me.

I’m no longer ashamed of my diagnosis, but I’m still learning about D.I.D, I’m still getting used to switching, losing time and often not really knowing who I am. Most of all I’m still getting used to my alters the various parts of me, I’m learning who they are, getting to know them one by one and accepting the alters are parts of me.

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Copyright DID Dispatches 2014

 

Confronting the past

 

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Please be aware that the content of this blog maybe triggering for some people.

Seven weeks ago a dear friend left hospital and moved to the town where I spent six years of my childhood. I so wanted to see her in her new home and yet it meant facing some demons of my own and I knew that would be difficult.

I had lived in this place for six years back in the 1970’s and they were not happy years, they were sadly filled with incidents of abuse and trauma. Going back would mean facing those memories head on and trying to cope with the plethora of triggers that are there. After many weeks of procrastinating I made the difficult decision to go and so earlier this week I ventured to this place full of memories and triggers.

I didn’t make this decision alone, I had discussed this with my family and briefly talked the matter over with my psychologist. It was his words that resonated the most, he had said that going would allow me to replace the negative memories of the past with positive memories of today. That seemed to make sense to me, I realised that I could let my past control me forever or I could attempt to reclaim my life.

I arranged with my friend to visit her and made plans with my daughter J, who agreed to drive me and be my supporter for the day. She knows a little about my past, but understands Dissociative Identity Disorder and so she is more than able to deal with any trigger reactions.

We travelled on bank holiday Monday and set off quite early, the journey was going to take us between 2 and 3 hours so plenty of time for me to talk internally with my alters, the other parts of me. I felt slightly anxious in the morning as we set off, but also very determined to do this and confront the past. As we got nearer to the small former mill town in the heart of Yorkshire my stress levels were rising, but I had kind of expected this so we pushed on through. I felt I was doing alright until I realised that our sat-nav was directing us on a route that past a key trigger point, there really was no other route there and my decision began to feel like a disaster waiting to happen.

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Suddenly I could feel one of my alters, the fear and anxiety began to mount as I tried to communicate internally with this part of me. I did the usual talking in my head to them, then out loud, in the hope I could calm them and reduce their fears. I totally understood their fear I was taking them past a place where they had been abused, this wasn’t just going to trigger them but potentially destabilise the whole system, the whole of me.

It wasn’t easy and J suggested we pull over, but I didn’t feel that would help I knew we had to do this, we had to confront the past it was important. It was also important for my friendship as my friend isn’t going to move anytime soon and I hope to be able to be visiting her quite often. She cannot help living in a place which is full of triggers for me, and I am certain my past will not hinder this friendship that was formed in the darkest of times in hospital.

My emotions as we neared her home and the trigger house were all over the place, I was tearful, sad, afraid and much more too. My daughter kept trying to focus me on the here and now and how safe we were today, it helped to be grounded and to be reminded of why we were doing this journey. We made the decision to look away when we passed the house, but in the end I felt drawn to look at the driveway entrance which hasn’t changed in over forty years. I can recall shuddering and feeling a chill run down my spine, yet we managed to keep talking internally and keep safe. J tells me that I switched on and off throughout the journey, but I just kept feeling distance and surprised at intervals at how far we had travelled already.

Throughout the day wherever we went I passed places or buildings that triggered me, I felt as if it didn’t matter where I looked it took me straight back to the 70’s. The flats were I once lived, a school I had attended and the council estate that I lived on before I left this dull and dreary place and where I can recall being hurt. So many moments during the day, it was hard to not panic especially when I could feel the fear of those days. Everywhere I looked I saw something that reminded me of those awful days when as a young child I was robbed of my innocence and defiled by those who really didn’t care about me, my feelings or my anguish and pain.

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J and I had planned to take my friend out away from the town to the rural landscape that is less than half an hour away. We did this and I felt at ease for the first time that day, I was treated to the glorious sight of bluebells; my favourite flowers and the sound of water flowing gently down the river. I felt at peace for the first time that day and my friend and I had chance to catch up on each other’s news and enjoy each other’s company. It was good to see her free from the confines of hospital, she is doing so well and I am so glad she is rebuilding her life.

The sun was shining and so we decided to have an ice cream, my friend and J queued as I sat in the sun waiting, when I suddenly realised I had lost a brief amount of time. I panicked, I felt vulnerable and thus began my internal dialogue with the alters once again. Now the dialogue is still one sided I talk in my head to them, a bit like most non DID people do self talk, and I just hope they hear, listen and respond. There is no dialogue back but I feel some emotions from some of the other parts of me, and that enables me to focus on trying to ally their fears, desperation, sadness or anxieties. I was trying desperately to establish what had caused me to switch; it really bothers me when I lose time, I realised that all around us were people speaking in a Yorkshire accent and that was really bothering parts of me. I did lots of positive reinforcement, reassuring all of me that these people were not going to harm us and that many of the people who did are no longer here.
I was able to reduce some of the anxiety and fear by the time my friend returned and I did enjoy the ice-cream.

By the time we ventured back dropping my friend of en-route I felt exhausted, I also felt proud of me, all of me for beginning to rebuild memories of this place for replacing bad ones with good.
Yes it wasn’t easy and yes I couldn’t have done it without support but I managed it, I haven’t beaten the triggers yet, there is a long way to go. However I have begun a process of challenging the past and not allowing it to ruin my present or my future.

Once home I did struggle with sleep, my alters were finding it hard not to be afraid or anxious of the past. I felt desperately sad as I began to think that I had caused all the distress that I now knew the other parts of me were feeling, I guess I felt guilty. I found myself ruminating over my past, I have so many questions that I know I may never be able to get answered. As a victim I truly believe that the impact of abuse isn’t just something that impacts you at the point of the incident or as in my case sadly incidents, the damage has lasted over forty years. The impact of that time is me being fragmented, of having Dissociative Identity Disorder and so much more, the pain hasn’t gone away no it’s damaged and invaded my very being right up until today.

The impact of confronting my past this time was that It was gone 5am by the time we managed to sleep and the impact of that poor sleep lasted into Tuesday. Yet I know that I did the right thing by going and I would do it again, for it is only by challenging the past that I can build a better future for me, all of me.

 

Copyright DID Dispatches 2014