Pseudogenic, iatrogenic or traumagenic? – How do we know that DID is real?
So I’m curious. On what do you base your belief in dissociative identity disorder?
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-
So when someone I have never met tweeted me to say, “So I’m curious – on what do you base your belief in dissociative identity disorder?” it got me thinking. How to answer? How can I take the totality of my life, the first-
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 dissociative identity disorder 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 term ‘dissociation’ 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 dissociative identity disorder 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-
DISSOCIATIVE IDENTITY DISORDER – HOW CAN WE TELL IF IT’S ‘REAL’?
One of the arguments against dissociative identity disorder 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 dissociative identity disorder 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 dissociative identity disorder (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 dissociative identity disorder 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 dissociative identity disorder, 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 dissociative identity disorder, and a lot of them struggle to believe that they have it. 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 dissociative identity disorder 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 it 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-
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 dissociative identity disorder doesn’t exist. Sometimes in our black-
So, firstly then, is dissociative identity disorder real? The iatrogenic argument for it, also known 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.
MY EXPERIENCE OF DISSOCIATIVE IDENTITY DISORDER
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-
After I left College a couple of years later, again I suffered a kind of ‘breakdown’ during which suicidality and self-
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-
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-
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-
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-
A few months later I started to see a new therapist. This new one had lots of experience working with dissociative identity disorder. 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 dissociative identity disorder?” 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-
The case of Sybil suggests that iatrogenic dissociative identity disorder 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-
THE ENCOURAGEMENT OF SEVERE DISSOCIATIVE IDENTITY DISORDER
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 dissociative identity disorder’ 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 dissociative identity disorder that I have met are genuinely dissociative. And most of us worry that we have ‘made it all up’, especially when we are co-
But I do also believe that there are cases of ‘false’ dissociative identity disorder. Some of the literature on this subject (Reinders, 2008; Brand et al, 2006) divide the 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-
Again with our black-
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 dissociative identity disorder. 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-
So is it straightforward then to tell fake cases of dissociative identity disorder 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 dissociative identity disorder 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 dissociative identity disorder obvious on an ongoing basis” (2009, p.600), because this is my experience of living with it – although I speak publicly about having dissociative identity disorder, no-
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 dissociative identity disorder as well. Mostly I would say that we try to hide our symptoms because as Elizabeth Howell says, dissociative identity disorder 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 dissociative identity disorder, 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.
THE SPECULATION OF DISSOCIATIVE IDENTITY DISORDER’S AUTHENTICITY
So is dissociative identity disorder real? Well there is a growing body of research to suggest that you can’t fake it 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-
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 dissociative identity disorder, 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 dissociative identity disorder.
Reinders et al (2003, 2006) looked at blood flow in the brain and they saw differences between dissociative identity disorder 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-
SO, IS DISSOCIATIVE IDENTITY DISORDER ‘REAL’?
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 dissociative identity disorder is real because it is part of my day-
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-