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Is Dissociative Identity Disorder Real?

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Felicity Lee

Is Dissociative Identity Disorder Real?

Post by felicity on 1/5/2013, 7:15 am

I really like this article - so, decided to add it here.



Pseudogenic, iatrogenic or traumagenic? - How do we know that DID is real?

by Carolyn Spring



“So I’m curious. On what do you base your belief in DID?”

This was a tweet I received from a fellow twit based in the US a few months ago. The more I use social media, the more I realise how controversial Dissociative Identity Disorder is. For me, after the last 5 or 6 years, it is ‘normal’. I write about it, I train about it, I read about it and most importantly of all, I live it on a daily basis. So I’m always surprised when I come across the ‘DID-deniers’, the majority of whom seem to be based in America. If I do a search for ‘dissociative identity disorder’ on Twitter, on a daily basis I can come across dozens of tweets from people mocking it, making a joke out of it (some of them stupefyingly tasteless, some actually quite amusing), and most of all attacking its credibility as a psychiatric diagnosis and in fact its very existence.

So when someone I have never met tweeted me to say, “So I’m curious – on what do you base your belief in DID?” it got me thinking. How to answer? How can I take the totality of my life, the first-hand, this-is-it experience I have had over the last few years, and construct out of it some argument that would ‘prove’ that DID exists?

The reality is that all of us will believe what we want to believe, and all of us will deny what we want to deny, and if I am responding to sceptics in the hope that I can change their mind, I am wasting my time. What interests me more is thinking about the journey that I myself have been on that has got me to this point of believing that DID is a valid diagnosis and a very real experience not just for me but also for hundreds of people I have come across in the last couple of years.

I had never heard of the terms ‘dissociation’ or ‘dissociative identity disorder’ until just a few years ago. I hadn’t even come across ‘multiple personality disorder’ and I first read the book Sybil about three years ago, and watched the film for the first time just a couple of years ago. I hadn’t been exposed to any other media representation of DID that I am aware of. Despite my wide reading and education, Gollum and Sméagol are the nearest I had come to it, and certainly no-one was using technical terms to describe them.

One of the arguments against DID is that it is a disorder created by therapy – it is ‘iatrogenic’; literally, its origin is in the treatment. So someone may go into hospital for a back operation during which the bowel is ruptured. The ensuing problems with the bowel are ‘iatrogenic’ – they were caused by the surgery, the treatment itself. And one of the arguments is that DID is caused by the therapist, planting the suggestion that we have ‘multiple personalities’. Either consciously in order to please, or at a completely unconscious level, we then develop the symptoms expected of us. This is the argument levelled at Sybil, and Simone Reinders, a neuroscientist involved in studying DID (and who does in fact believe that DID is a valid diagnosis), concedes that Sybil was “a manufactured iatrogenic case of multiple personalities … Sybil was manufactured through hypnosis, pentothal and a close involvement between subject and therapist” (Reinders, 2008, p.45). This case has been the subject of the spotlight in recent months as a new book has been published. Written by Debbie Nathan and entitled Sybil Exposed: The Extraordinary Story Behind the Famous Multiple Personality Case (2011), it gives ‘proof’ that the allegedly true story was fabricated. (I am yet to understand why anyone thinks a true story is true when Hollywood is involved …) But a number of newspapers, magazines and websites have devoted numerous column inches to discuss the book’s ‘findings’ and some have therefore by extension decided that DID does not exist at all as a valid diagnosis.

I stand up in public on a regular basis, have written numerous articles, am in the process of writing a book about DID, and yet I got a cold shiver down my spine when I first read about the exposé of Sybil. The thoughts that ran through my head were: Am I making it all up too? Am I a fraud, a fake? Is this all a case of ‘false memories’ and am I just subconsciously trying to please my therapist? Am I in fact more ‘mad’ and more ‘bad’ than I realised?

I know a lot of people with DID, and a lot of them struggle to believe that they have DID. They struggle to believe that they had a traumatic history, and they struggle to believe that the plethora of symptoms which plague their lives on a daily basis are anything other than a sign that they are intrinsically ‘bad’ or hopelessly ‘mad’. Many of us with DID hate our diagnosis, are deeply ashamed of it, and as a result don’t want anyone else to know about it. When people start writing articles in newspapers, magazines and blogs claiming that ‘DID’ doesn’t even exist, it is deeply distressing to us. On the one hand, we would like nothing more than to discover that we don’t have DID after all – that we don’t have multiple personalities; that we don’t have a horrific history of childhood trauma or neglect; that we don’t have fundamental divisions in our psyche between ‘Apparently Normal Personalities’ and ‘Emotional Personalities’ (van der Hart et al, 2006). On the other hand, we would be terrified: if this label, weird and incomprehensible though at times it is, doesn’t describe what is going on for us in our daily lives, what on earth is wrong with us? And if we just think we have parts or alters (or whatever other term we prefer to use), when actually they aren’t real and they have just been created by the therapist who was supposed to be helping us … then what hope is there for recovery for us, when we are suffering from a non-existent disorder, and the people who are supposed to be helping are actually the ones causing the problem in the first place?

Of course, there is some false logic in the argument that just because Sybil was “a manufactured iatrogenic case of multiple personalities” (Reinders, 2008, p.45) – and let’s face it, just because a journalist says that it was, doesn’t make it so – it doesn’t mean that genuine DID doesn’t exist. Sometimes in our black-and-white, ‘splitting’ mentality, we strive to adopt a position that is ‘totally true’ or ‘totally false’. There are some people who experience pseudo-pregnancies and tell people because of their own emotional needs that they are having a baby when they are not. Just because this is the case doesn’t mean to say that pregnancy does not exist. The evidence for that is a little bit obvious. So I’m not particularly fussed about whether the case of Sybil is proved to be ‘true’ or ‘false’. Some may argue that it is a public relations disaster for DID, but I don’t think it is. I actually think that the further away we can move from a stereotype of multiplicity, and the model of Sybil as a kind of ‘gold standard’ for DID, the better it will be for all of us. There is no doubt that Sybil – the book, but especially the film – brought Multiple Personality Disorder into public consciousness. But there is also an argument that it provided a skewed representation of what Dissociative Identity Disorder actually is – a caricature that it is very difficult for us all now to get away from.

So, firstly then, is DID real? The iatrogenic argument for DID, also know as the sociocognitive model, is that either at a conscious or an unconscious level, the dissociative phenomena such as ‘multiple parts of the personality’ are created, or encouraged, or exaggerated as a result of expectations from the therapist. Where this argument immediately falls down in my case is that I had dissociative symptoms many, many years before I first sat in a therapist’s room.

I had what I would term my first ‘breakdown’ during my second year at University. For several weeks I was found at various times by various friends in College wandering around vaguely in the middle of the night, staring into space or rocking, and acting and speaking in a childlike manner. They reported that I was ‘not myself’, that I seemed to be afraid of ‘the men coming’, that I didn’t like ‘the ropes’ and so on. I had absolutely no motivation whatsoever to do this for attention or secondary gain at the time – it remains one of the most painfully embarrassing and shameful times of my life. I was at Cambridge University, a high-flying student with significant academic potential, and I was ‘acting mad’ and in a way that just resulted in me being ostracised from my peer group and brought me to the stern and unforgiving attention of the College tutors, whose ‘pastoral care’ of me had as its only goal my achieving a First. I was mortified at what was reported back to me about what had taken place during these episodes of ‘lost time’. I would have done anything to stop them happening and for me not to suffer the loss of respect and reputation that resulted in that most demanding of environments.

After I left College a couple of years later, again I suffered a kind of ‘breakdown’ during which suicidality and self-harm were once more high on the agenda. Friends would report ‘strange behaviour’, especially that which would appear to be from a much younger part of me, accompanied by inconsolable terror and accounts of horrific abuse. I did my best to hide it all. I didn’t want anyone to know. I was shamefully afraid that I was ‘insane’ and that if I went to a GP about it, I would be admitted to a psychiatric ward and never let out again. I feared for my job, my career, my ability ever to form a relationship or marry or have kids. I didn’t want anyone to know, so my bizarre behaviours were kept to a couple of discreet friends, one of whom was my housemate and from whom it was impossible to hide quite so much ‘insanity’.

It was over ten years later before I began to have counselling. By then, in 2005, I had suffered a catastrophic breakdown which affected every area of my life, and for nearly a year I teetered on the edge of existence, trying to cope with life by day whilst at night a whole series of ‘alter personalities’ or ‘parts’ made themselves known to my husband and one close friend. Again, we hid everything. I didn’t want anyone to know. I was deeply ashamed. I wouldn’t even see the GP about ‘normal’ stuff, in case she somehow figured out what else was going on. My husband met parts of me called ‘Diddy’, who was 4 years old, and ‘Charlie’ who was an 8-year-old boy, and ‘Switch’, who was again male and about 12. And then, eventually, at the end of ourselves, after 13 months of chaos and not being able to keep it hidden any longer, I started counselling.

But I entered therapy with the express intention of not ‘dissociating’. I don’t know where I had picked the word up from. I had read a lot of books to try to make sense of what I was experiencing, and was shocked to realise that the flashbacks of abuse I was experiencing, the guilt, the shame, the self-harm, the anger, the insomnia, the physical pain, the edginess, the hypervigilance, the startle reflex, the panic, the confusion – all of it was ‘normal’. The nearest I could get to an accurate label was ‘post traumatic stress disorder’.

But somehow, somewhere, the word ‘dissociation’ played a role even though I didn’t know what it was. And I went into counselling very much determined not to mention the fact that I had these little episodes of lost time, during which my husband dealt with a child part hiding under the table who didn’t want her wrists to be tied any more. I wanted this counsellor to help me, not think I was mad and that I was untreatable. I fully intended to be thoroughly normal while I was in counselling so that I could just get better quickly and quietly.

It took about 3 months for ‘parts’, or ‘alters’ to appear in counselling. I was mortified to realise that I didn’t know what had gone on for most of the session that day. Perhaps it was because we’d had to use a different room. I don’t know what triggered it, but I did have towards the end of the session that familiar sense of waking up from a deep dream and not being able to quite remember what we had just been talking about. In private, I berated myself, lectured myself in a ‘must do better’ kind of a way, and hoped against all hope that I hadn’t messed the whole thing up by acting ‘weird’. It was the Summer months anyway and so sessions were a little more ad hoc than they had been up to that point. I was relieved, because it gave me a break to pull myself together and make sure that I didn’t ‘lose time’ again.

And I’m not sure what happened next, but I do know that ‘lost time’ became a feature of our sessions and that it became a kind of talked-about-but-not-talked-about thing. It just seemed a natural and logical extension of what had gone on in our earlier sessions, where I had watched myself talking but from a distance and wondered what on earth I was going to say next, because I had no idea. I had listened to myself talk about a rape in a stables, and I really and literally didn’t know what happened next – until I said it. Then I would go home and beat myself up for lying and making it all up, and yet with a deeply anxious sense that I wasn’t, and that it was true, and that I knew it was. But on an emotional level it was certainly easier to believe that I was just making it all up.

A few months went by and the puzzle of what I was, the puzzle of what my behaviour meant, was getting bigger as my behaviour became more bizarre and I lost more and more time during sessions. My husband was used to it at home, and we look back now and wonder why we never really tried to figure out what was going on. It just was. It didn’t really occur to either of us that there might be a name for it, a label to describe it, and that it was something that other people did too. I think I just assumed that it was part of my inherent ‘badness’ and that I needed to keep on trying, and maybe a bit harder, to ‘stop it’.

And then one day in my session, towards the end, my therapist produced a booklet about trauma and dissociation, and suggested I read it. I took it away and devoured it instantly, and there was that awful, stomach-sinking feeling that I was reading something that described me. Suddenly ‘it’ – ‘it’ being the madness of my behaviour – had a name: ‘Dissociative Identity Disorder’. I sat and tried to argue with it, pointing out all the ways that I wasn’t an exact match and that it didn’t really apply to me, but at the beginning of my next session, we talked about it together. “Is this – me?” I asked. “What do you think?” came back the reply. “Is this what I’ve got?” And again: “What do you think?” I shrugged. “Maybe.” I hoped: “Maybe not.”

A few months later I started to see a new therapist. This new one had lots of experience working with DID. I decided to play it cool, try to get her to realise that I wasn’t mad, that I was just a normal member of society, just like her. But by the end of the first assessment session, to my horror, 14 of my alters had introduced themselves to her. I came back into the room with that foggy sense of having been somewhere but I couldn’t quite remember where, just like in a dream. “Do you think I’ve got DID?” I asked. I was desperately hoping that she would say no, because then I wouldn’t have a label, I wouldn’t have this ‘thing’ hung around my neck like a millstone that marked me apart from ‘normal’ people and placed me on the ‘other side of the table’ as I saw it at the time. In my professional career, I had always been on the ‘right’ side of the table, and I had seen the way that people on the ‘other side’ were treated and referred to, especially when they weren’t there. I never ever wanted to be on the ‘other side’, and yet by having a label, having a psychiatric diagnosis, I knew that I would be – and I hated it.

“Oh yes,” the therapist replied breezily, “absolutely no doubt about it at all.” And she seemed so nonchalant about it, as if I’d asked her if I had brown hair, that somehow some of the shame receded, but I still recoiled inside with that awful sense that I couldn’t get away from facing that reality any more.

According to the iatrogenic model, I shouldn’t have had any ‘parts’ or ‘alters’ until I started therapy. But they were there over ten years previously, at College, and afterwards when I left and shared a house with a friend. They were there for a whole year, my annus horribilis of breakdown and utter insanity, before I entered therapy for the first time. My first therapist, for nearly a year, observed what was happening and eventually, tentatively, suggested a label that seemed to fit. But she wouldn’t be definitive about it. It was left to me to decide that the glove fitted. It was a glove that, if I’d wanted to, I could have thrown away, and I could have just kept talking about suffering from a ‘breakdown’ or even ‘post traumatic stress disorder’.

I eventually completed some screening tools and when I was discussing the results of them with my GP she started tapping away on her computer. “How do you spell it?” she asked, and dutifully typed in what I told her. I sort of wanted something more official than that, but I was also mortified at even that brief description appearing on my medical records. I have since found out that it’s best not to volunteer mental health information if you ever want to get reasonably-priced life insurance.

The case of Sybil suggests that iatrogenic DID is a possibility. I am equally convinced that in my case, and in the case of many people that I know, that is not what has happened. I believe that my DID is traumagenic, that is to say that it was caused by early, chronic, extreme abuse, which occurred on an existing fault-line of disorganised attachment.

But I do also believe that we can be consciously or unconsciously ‘encouraged’ to present in a more dramatic way than we need to. We can feel the pressure to ‘fit in’, to be ‘proper DID’ and act and behave accordingly. This is a fear that many professionals have, and sometimes rightly so, about what happens when dissociative survivors meet together. Will we ‘encourage’ one another to ‘act out’, will we simulate each other’s symptoms, and imitate what we think we ‘should’ be like – for example, by pretending to switch to a younger alter, or exaggerating a switch or childlike behaviour? I think that on occasions this does happen. After all, it happens in all groups, where there is a convergence of behaviour in order to fit in. And the same can be true of dissociative groups. But the same can be true in a positive sense as well, in that if what is modelled is good coping strategies, and control over switching, taking responsibility for ourselves and appropriate relating, then that can have a positive impact and empower dissociative survivors to cope well with their symptoms too.

I think the vast majority of people with DID that I have met are genuinely dissociative. And most of us worry that we have ‘made it all up’, especially when we are co-conscious. It’s hard to believe that what you are saying is true when you ‘hear’ yourself saying it from a distance and at the very same moment you’re thinking, “But I didn’t know that.” The experience of co-consciousness, of having two separate and distinct but co-existing streams of consciousness, is a very strange concept and not one that is easy to explain to people who do not experience it. I have met many, many people who fear that they are simulating DID because they ‘observe’ themselves as separate parts of the personality. And often what happens is that, because we are so averse to the dissociative diagnosis, and so phobic of the realities of the abuse that led to that dissociation in the first place, we often declare to ourselves and especially to our therapists that, “We’re not really DID after all – we’re making it all up.” This is one of the arguments used to ‘prove’ that Sybil was making it all up – because she said so. I don’t know the truth in that particular case, but it did make me smile because it’s a self-directed accusation I hear on a very regular basis from many genuine DID people. If only we could convince people (ourselves included) that we are normal!

But I do also believe that there are cases of ‘false’ DID. Some of the literature on this subject (Reinders, 2008; Brand et al, 2006) divide DID cases into traumagenic (ie genuine), iatrogenic (caused by the therapy) or pseudogenic (falsified). There is a certain amount of research and debate around the issue of pseudogenic diagnoses, and most people divide it into two types. Firstly there is malingering, which is where symptoms are feigned for financial, legal or other gain, including exculpation for crimes. And secondly there is ‘factitious’ presentation, where the person feigns symptoms not for financial reasons, but in order to assume the sick role, to meet personal or emotional needs, or to avoid responsibility. This can be at either a conscious or unconscious level.

Rogers (1997) estimated that 7-17% of psychiatric diagnoses are malingered. As far as factitious psychiatric diagnoses are concerned, that rate is between 0.5% and 6%. Factitious presentation of dissociative disorders are somewhere between 2% and 14% according to Brand et al (2006). So the research literature clearly points to the fact that some cases of mental health diagnoses, including dissociative disorders and DID, are clearly ‘false’. However, Nijenhuis and van der Hart make an interesting point that, “These problems of malingering, factitious disorders, and simulation are not at all unique to or heightened in DID but occur with similar frequency in other genuine mental disorders” (Nijenhuis & van der Hart 2009, p.467). So, yes there is such a thing as ‘fake DID’ but at no higher level than people feigning other disorders.

Again with our black-and-white need to split, within the DID world we want to believe that everyone we meet who claims to have DID is real DID, not factitious or malingered, but clearly a percentage are subconsciously or consciously making it up. Those of us with trauma backgrounds generally struggle enough with suspicion, paranoia and mistrust as it is, so to figure that maybe around 10% of people we meet who claim to have DID may not actually do so is worrying. So can we tell the real cases from the fake ones?

A research study by Coons and Milstein in 1994 was based on 112 consecutive admissions to a dissociative disorders unit and they found that 10% of them had factitious or malingered DID. So how did they distinguish the real from the fake? “An exaggerated, highly dramatic clinical presentation, combined with classic symptoms of malingering characterised the malingered or factitious DID cases … Malingerers often had a history of lying, made claims of fantastic and unbelievable psychological symptoms, and refused to allow information to be obtained from collateral sources” (Brand, 2006, p.66). So people who are faking it are often a bit over-the-top about it – they exaggerate. One study (Welburn et al, 2003) also showed that genuine DID patients showed more signs of distress and dissociation during the assessment interviews than people who were faking it. Boon and Draijer (1999) point out in their study that they were able to distinguish between genuine and simulated DID because real DID people evidenced higher levels of anxiety, more shame and more conflict over their diagnosis. This very much fits with my experience of DID – it’s not something that most of us want to shout from the rooftops and it’s not something that we find easy to talk about. The majority of people I know are highly conflicted about admitting to having DID, and although I am nowadays very public about my experience, that wasn’t an easy place to come to and still has its difficulties for me now. There remain people in my ‘normal life’ whom I don’t want to tell, and from whom I still hide.

So is it straightforward then to tell fake cases of DID from real ones? Well, not really, no. Because as Brand goes on to say, “A small group (less than 10%) of genuine DID patients are reported to present in a dramatic fashion, so this indicator may not be reliable” (Brand, 2006, p.67). In other words, people who are faking DID seem to have extravagant claims to their psychological symptoms, but that is actually part of the experience of being DID as well. It is fantastical – switching between personalities, the abuse we suffered as children, is often so far beyond people’s imagination that it seems that it cannot, must not be real. And yet it is. Just because something doesn’t seem real doesn’t mean that it isn’t: just look at the controversy caused by the revelation that the earth is round.

The other issue that I think is important is to what extent we may hide our symptoms (going one way down a spectrum), or exaggerate them (going the opposite way up that same spectrum) in order to have our needs met. I am reassured by Kluft’s finding that “only 6% make their DID obvious on an ongoing basis” (2009, p.600), because this is my experience of living with DID – although I speak publicly about having DID, no-one apart from my therapist and my husband sees my ‘parts’. None of my friends, none of my colleagues, none of the people in my locality see any evidence of me being dissociative, unless there is a ‘perfect storm’ of circumstances and I’ve failed to take notice of the signs that I am heading out of my window of tolerance and it has got to the point of being out of control. Several years ago, that happened fairly regularly but nowadays it is a rare occurrence as I have learned communication and co-operation between the different parts of me. Generally, it’s a private thing.

But it’s a reality that everyone – people with or without psychiatric conditions – will hide their symptoms if it’s adaptive to do so. If we need to be well to do a presentation at work that has repercussions for our career, we are likely to mask our symptoms as much as we can, even if those are only symptoms of a cold. But if we need to make a point to the doctor to get what we need in terms of medication or treatment or referral, we all tend to exaggerate our symptoms. That is normal. And the same thing happens within DID as well. Mostly I would say that we try to hide our symptoms because as Elizabeth Howell says, DID is “a disorder of hiddenness” (2011), but sometimes some of us will exaggerate our dissociative symptoms in order to get our needs met, and I believe that some of this is behind what people might label as ‘iatrogenic DID’. It is not that we do not have DID at all and are pretending (pseudogenic DID, either factitious or malingering). It is that we can feel that there is a certain way to be in order to be ‘proper DID’, and that can be affected by media representations such as Sybil and more recent publications, or by the role models around us.

So is DID real? Well there is a growing body of research to suggest that you can’t fake DID to a neuroscientist. There have been a large number of brain imaging studies using various neuroimaging techniques, including structural magnetic resonance imaging (sMRI), positron emission tomography (PET scan) and single photon emission computed tomography (SPECT). It is always hard to speculate about the precise brain mechanisms involved due to the wide diversity of neuroimaging techniques used and the methodology and focus of the studies. But there have been four rigorous, larger-scale studies (Vermetten et al, 2006; Reinders et al, 2003, 2006; Sar et al, 2001, 2007) which basically suggest that there are differences in the brains of people with DID compared to others.

For example, Vermetten et al (2006) looked at the volume of the hippocampus and amygdala and found that hippocampal volumes were 19.2% smaller in people with DID, and amygdalar volumes were 31.6% smaller in people with DID compared to those without DID. The researchers think that the hippocampus and amygdala are smaller in DID patients due to trauma and abuse, which supports a traumagenic model of DID.

Reinders et al (2003, 2006) looked at blood flow in the brain and they saw differences between DID people’s ‘Apparently Normal Personalities’ and their ‘Emotional Personalities’ when listening to a trauma script compared to a neutral script. The ANPs had the same kind of blood flow when listening to both types of script, but there was a difference when the EPs listened to the traumatic material in comparison to the neutral script, suggesting that EPs process or think about traumatic material differently to ANPs. This fits with my experience as an ANP where I can listen to even my own traumatic material and have no emotional reaction to it, as if it were non-traumatic. It’s as if the brain when I’m an ANP does not register trauma as traumatic – it’s ‘dissociated’. It’s my EPs who react ‘normally’ in that sense to traumatic material, responding to it with high anxiety and distress (increased activation in certain parts of my brain). The ANP is actually not ‘normal’ because they are not distressed by distressing material. That’s why we can continue with normal life as if this stuff isn’t going on for us, totally switched off from it.

But all the science in the world won’t convince people – just think global warming nowadays or the dangers of cigarette smoking in the 1960s. At the end of the day I am convinced that DID is real because it is part of my day-to-day existence. I am reassured that there are some scientific studies emerging that validate my experience, as well as hypotheses such as the theory of structural dissociation (van der Hart et al, 2006). I believe that certain cases of DID can be iatrogenic. And I also believe that it can be pseudogenic – either factitious (for emotional gain, often unconsciously), or malingered (for financial or other gain, often consciously).

But just because some people make it up, consciously or otherwise, doesn’t mean to say that it doesn’t exist, just like the analogy of pseudo-pregnancy. If we could get away from the Sybil stereotypes, it might help, but the sad thing is that we suffered disbelief and denial as children and this is re-enacted for us in so many contexts again as adults. It is distressing enough to suffer from DID as it is, without the added weight of people not believing that it even exists. I am reassured that rates for ‘false’ DID are no higher than for any other psychiatric diagnosis. I am also reassured that there are bodies such as the ISSTD and ESTD (European Society for Trauma and Dissociation) and that they have produced guidelines for treating DID – there are lots of people who take this condition seriously nowadays. But perhaps, as I say on training days, “denial of the syndrome is part of the syndrome”, and so the hardest battle is for us to believe it ourselves.


© Carolyn Spring 2012 - From Multiple Parts: http://www.pods-online.org.uk/isdidreal.html



     

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felicity
Felicity Lee
Felicity Lee

Re: Is Dissociative Identity Disorder Real?

Post by felicity on 1/5/2013, 7:19 am

omg - I read this and wanted to cry. She says what I wish I could say to all of the 'skeptics' out there. I stumble with my words and just want to tell them that they are so very wrong. I mean - really? People out there actually run around stating seriously that DID doesn't exist. And, they spout out silly 'sources' from small private blogs that contain nothing but gossip and little books written with no evidence at all. Ridiculous. But, like she says - nothing anyone says is going to change what they want to believe - great article - thanks Carolyn Spring.



     

Don't miss the Ivory Garden Conference this year!!

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Who is Ivory Garden Nonprofit Corporation?

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BrownEyes
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Re: Is Dissociative Identity Disorder Real?

Post by BrownEyes on 1/5/2013, 9:26 am

Thank you so much for posting this. I struggle with denial at times, and it just feels so reassuring to hear her say things that I can really relate to.
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TeamMe
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Re: Is Dissociative Identity Disorder Real?

Post by TeamMe on 1/5/2013, 10:03 am

Read about half (?) till the part about making it up.
My first t said I was not DID. What if she was right and I am just making all this up so I can fit in?
I don't want to fit in. I want it to be real b/c it is real. I am talking in circles here.
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Izabel
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Re: Is Dissociative Identity Disorder Real?

Post by Izabel on 1/5/2013, 11:22 am

Thanks for posting this, Felicity.

What astounds me is how much the DID community seems to be distancing themselves further and further from Sybil as time goes by. I wonder if Sybil were here with us today, would the DID community be saying such things as "Sybil stereotypes"? That woman and her therapist opened the door for the rest of us Multiples, yet as time goes by, Sybil seems to receive less and less respect, admiration, and appreciation from the DID community for her courage to share her story. This saddens me very much. She was a good human being, and a very gifted artist. I think she ought be celebrated, not dismissed in any way.
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Carthegre
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Re: Is Dissociative Identity Disorder Real?

Post by Carthegre on 1/5/2013, 12:21 pm

Thank you for posting this. I doubt so regularly, my t says "I know, you don't want this, let's talk about something new." I knew nothing about how others experienced DID until I came here and as I read posts was constantly saying, yes, that is the way it is. . . How in the world could I make up something I knew nothing about and have it be so similar to so many other people who were also making it up? And yet all the systems are so different, so unique. Oh well, she said it all so much better than I could have.
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Felicity Lee
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Re: Is Dissociative Identity Disorder Real?

Post by felicity on 1/5/2013, 6:15 pm

I think that she is talking about the movie version - which was very dramatic and not realistic.

I mean, I thought that what she wrote was not dismissing or anything. There are always going to be some who do not actually have DID out there. But, like she said, it is easy to tell, because most - but not all - would be very open about it and not denying it - that makes sense. If someone is openly flaunting their multiplicity without knowing much about the symptoms that would cause a therapist to further assess and evaluate.

It is very difficult to read that sort of stuff, because like she said, we jump right on anything - we think black and white (at least, we do) - and if even one person in the world says they have it and don't - that must mean that includes us - everyone - and, the skeptics play on this truth.

But, we know that we have DID - no one ever had to tell us - we have been symptomatic since we were small children - longggg before we ever saw a t. The dx just made sense and things were clearer.

I like the article. I had defending myself - that's the main reason I don't tell many. Because, even those who say they 'know' all about DID can't possibly unless they have it. They make it sound like we are 'mentally ill' when we are not - that we are not intelligent - well, that is not true at all.

We are here on this boards talking - and, the fact that we all understand each other without ever having to explain ourself is amazing - it is not a fluke of some kind

And, all of the research does show that DID is real - it is the skeptics that drive me nuts. I do not understand why they don't just leave us alone and let us heal in peace. They did not experience childhood trauma and do not have DID - where do they get off abusing us more? sheesh. They try to say that I am not DID - that I don't fit the 'profile' - what is the profile - I ask them - female and uneducated - something like that - that shows just how ignorant they are.

Don't let them shake you - it is easy for them to do. Know that your truth is something that 'you' own - remember that the abusers use the same tactics. They are just another abuser trying to silence folks with DID.

Again, I do like this article, because it does give us a clear picture -



     

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sasha69
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Re: Is Dissociative Identity Disorder Real?

Post by sasha69 on 1/5/2013, 11:15 pm

Thanks for posting this article, facility.

In so many ways we all face the same misunderstanding, the re-abuse by the very people that buy title should be helping us to heal.

In this article she quoted from one review that was written by a man that did not see the full story or even the fact that the author from Sybil expose was discredited because the book was based on opinion not on fact.

That is the one thing
that drives us nuts back in the 90s I took part in a program that used MRIs and brain waves research to prove and to understand how the brain works with someone that has the D ID.

Nowadays
I have talked with others that have had these test, but it seems like the professional fields are silencing this one simple but true fact.

That those with D ID real D ID have physical changes that can be seen and recorded by scientific method. Many that claim that this is not possible are the very people that have the funds to keep it quiet and make sure that those that believe in a do not have the resources to make this information available to those in the general public.

When I was studying in the past, the one thing that I learned is that just because something is common knowledge does not make it true. Our very own FBI CIA and other intelligence agencies will tell you that they have to shift through all the data and find the truth because those that are willing to hurt others in break the laws first line of protection is to deflect the attention from them onto another.

So when I read this, I remember all those years that I was fully aware of who I am and what I am, only to be told by those around me that I did not know what I was talking about that I had so many other types of disorder I could not possibly be DID.

At this point in time, I stick mainly with my own inner knowledge that no one outside of me can know my own truth.

All those years that I tried to be an act like those around me I only lost myself in my ability to protect myself from being hurt by the very people that claimed to know and understand what I really needed to be.

I hope this author fully realizes that her truth can only be supported by how she sees herself. And that if she lets the opinions of others to sway her, that she is given them the power now only to hurt her but to silence her.

We hope that she can stay strong and write her story so that others will know that they are not alone.
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Old Soul
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Re: Is Dissociative Identity Disorder Real?

Post by Old Soul on 1/6/2013, 7:13 am

Great article, I think the people who don't accept DID as a valid diagnosis will never accept it, and will always find a reason to discredit it.

The argument that I hear often is there is no 'proof' DID exits because it is based on observable behaviours not valid research, I'm glad that there is more data to validate it now coming thru, but other diagnosis are based on observable behaivours such as BPD, PTSD, PD, even Alzheimer's can not be fully diagnosed while the suffer is living. I have to wonder if they called it by an other name would it be more accepted? Using terms such as dissociated fractured emotional affect dysregulation spectrum disorder...

OS
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Re: Is Dissociative Identity Disorder Real?

Post by felicity on 1/6/2013, 1:41 pm

Oh, I like that.

If I am correct, because I am not checking right now - the DSMV made one substantial change -

In the DSM-IV - the dr. had to witness the 'changes' in personality - and other symptoms in order to dx.

I believe that in the DSMV it is subjective. I hope I got this right.

This is a huge thing, because I have been in h so many times where the pdoc did not 'witness' changes or 'switching'. He has told me many times that though he does 'believe in' DID, he has never seen it. He says that it is because the hospital is a short stay h, and patients just don't get enough time to trust to 'show' the switches. Well... my last visit - he finally did, and again I am dx with DID. yippee - lol.

So, possibly this criteria of having to 'witness' the switches has caused a lot of problems. I mean, I switch all the time and no one even notices. I wonder what they are 'looking for'.

But, now - we can tell them if we 'feel' the switches - how we are perceiving ourself. It will take time, but this is a huge deal in psychology. They will have to learn from us - finally.

What you think?



     

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Old Soul
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Re: Is Dissociative Identity Disorder Real?

Post by Old Soul on 1/6/2013, 2:55 pm

I think that will mean more to those of us living with the DID, I think the Nay-sayers will have more of a hay-day with the dx.

What I find troubling is a person can come to the defense of DID, argue and argue and argue the validity of the diagnosis, but once you come forward as also a person living with DID then you face even more ridicule and speculation.

OS
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Re: Is Dissociative Identity Disorder Real?

Post by Guest on 1/6/2013, 3:40 pm

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felicity
Felicity Lee
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Re: Is Dissociative Identity Disorder Real?

Post by felicity on 1/6/2013, 7:24 pm

That is true, but I always think of the horror I felt all my life of living with Epilepsy. Omg, it was worse than DID - for me anyhow. Being made fun of at school, my husband avoiding me, afraid to drive or go to malls alone, being fired from one job after another, lawsuits - forcing them to give me accommodations, taking meds that made me sick, etc. And, then - there was the horrible denial. I fought for like 40 years openly for better treatment, public awareness - and, finally - the reality that it was not a mental illness after all.

We have won that battle - finally - and, it was difficult - if anyone remembers that.

I think it will take time with DID -

Oh, btw - there are still some steadfast skeptics on whether Epilepsy is a valid dx - yes there are - check out wiki.

No one wants to be in the public light with a controversial disorder that carries negative connotations. Denial is always a part of it. But, having DID is positive in that it saved our lives as children - we are still here where others aren't. And, I am glad of that - we all deserve the very best of treatment - and, we will get it.

Just saying.......



     

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Who is Ivory Garden Nonprofit Corporation?

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Contact Pat Goodwin, MA
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Re: Is Dissociative Identity Disorder Real?

Post by Guest on 2/25/2013, 12:02 pm

Great article. I really relate to having a hard time believing it myself. It's especially hard to believe with so much controversy surrounding it. When I started to hear about DID, already experiencing co-consciousness, all I could think was, "Oh, crap. Is this what I'm doing? Is this what I have? Am I somehow making this all up?" especially when I was mocked for panic attacks and switching selves. It's comforting to know others who've struggled with the same.
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Re: Is Dissociative Identity Disorder Real?

Post by Guest on 3/10/2013, 6:16 pm

I am new here. I was diagnosed Jan 2012. I try to keep it a secret. I have lost jobs because of switching. I have no friends and I don't date. My exhusband is my only confidante. I was surprised to find this site. I appreciated the post.
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