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

Written by Carolyn Spring
01 May 2011
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-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 dissociative identity disorder?” 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 dissociative identity disorder 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 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-one was using technical terms to describe them.

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-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 dissociative identity disorder 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 dissociative identity disorder, 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 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-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 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-priced life insurance.

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-line of disorganised attachment.

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-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 dissociative identity disorder 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 dissociative identity disorder 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’ 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 7-17% 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 dissociative identity disorder, 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 dissociative identity disorder 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 dissociative identity disorder’ but at no higher level than people feigning other disorders.

Again with our black-and-white need to split, within the dissociative identity disorder world we want to believe that everyone we meet who claims to have dissociative identity disorder is real, 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 dissociative identity disorder 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 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-the-top about it – they exaggerate. One study (Welburn et al, 2003) also showed that genuine dissociative identity disorder 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 dissociative identity disorder because real cases evidenced higher levels of anxiety, more shame and more conflict over their diagnosis. This very much fits with my experience of dissociative identity disorder – 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 dissociative identity disorder, 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 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-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 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-scale studies (Vermettenet 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 dissociative identity disorder 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 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-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.

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-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 dissociative identity disorder 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 dissociative identity disorder 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 dissociative identity disorder – 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.

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  • Fiona Oliver on 13 July 2017 at 7:20 pm

    I find it astounding that DID is denied. When I received this diagnosis after 30 years of standard psychiatric treatments (I’m fairly sure I saw every mental health professional in my county without progressing one jot), there was an instant somatic recognition that this is what I, and the “professionals” had been missing.

    It was as though my inner parts were jumping up and down excitedly at finding a narrative for their experience that didn’t try to force us into pre-ordained categories. Like many people, I had been labelled with all the major psychiatric illnesses and again, like many people, I resonated with one or two symptoms but not the majority. It was only when I started talking to and listening to my selves what I recovered enough memories to realise my life had been an enormous lie for 50 years.

    Sad, depressing, anger making? Yes, all of those but, mostly liberating. At last, I knew who I was and I knew what I was. Only those who have experienced DID and have been able to explain those experiences by virtue of naming it can truly understand it. Lack of subjective experience however, is not enough of a reason to dismiss another’s truth – ever.

    May the false memory brigade remember that truth is always called a lie until it becomes widely accepted, then it simply becomes a fact.

  • M K on 1 February 2021 at 3:42 am

    I’ve met one or two people via social media who’ve said they have alters. As I recall both were people who I met in disability rights/disability acceptance circles, and who were also in the LGBT+ community. It was similar to my experience getting to know a lot of fellow autistic people online, in that regard. People who are in touch with themselves enough to know they aren’t straight or cisgender, seem to also be self-aware enough to know they have a disorder/illness/are neurodivergent before mental health or medical professionals catch it.

    I really hope that (as it has to some degree with autism, imho) the internet’s proliferation of sources on DID and the experiences of those who have it, can help dispel the idea that it’s “fake,” as well as provide resources for people struggling with it.

    (Also, even if a case of DID was iatrogenic, would that matter? Is there a cure for iatrogenic DID? If not, I can’t see how it being caused by therapy would make it not a real mental health problem for that person? If you get a medical problem as a result of previous medical treatment, it’s still a real problem that needs to be treated, not something “made up” that you can just decide not to have anymore. Either way, the person has multiples/alters now.)

  • Samantha on 11 September 2021 at 8:34 am

    Thank you. I don’t have a diagnosis, but so much if this made me cry due to how true it rings for me. This is a very difficult time in my life and I feel insane. I’m still trying to figure out what is going on with me. I do have a therapist, but that isn’t going far until I can see a Dr to rule out medical issues that may cause my memory lapses.

  • Jessica Steele on 16 August 2022 at 10:08 am

    Thank you for all your blogs and training, after a year of Dissociation and misdiagnoses and stigma from the services here in the UK, put on anti psychotics when i’m not psychotic, you make so much sense to me, and when i’m my ANP it does feel like i’m faking it, but if i’m my EP I totally understand it’s disordering me at that time. It’s to art of Dissociation is to not know.

  • Dajenya S Kafele on 13 April 2024 at 10:04 pm

    Thank you Carolyn Spring.
    I am a psychotherapist who has treated at least 8 clients with dissociative disorders, (mostly DID), over my 14 year career, during which I worked with 114 clients thus far. Six of the 8 were child clients, as I specialized in children for my first 12 years. It is likely that more than 8 of my clients had DID, but I did not begin to recognize it until two extremely abused and dissociated child clients led me to study and learn all I could as fast as I could about DID. They were my 84th & 85th clients 9 years into my career. Looking back, I was able to recall another child I’d worked with years before with very strong indicators of DID, but which I had not recognized due to my unfamiliarity with the disorder. It is not unlikely that I missed some other cases as well, either due to client efforts to hide their condition, or due to my own ignorance of the phenomena.
    So it is through my own clinical experience that I learned that DID is not nearly as uncommon or “rare” as so many professionals and others claim. Nor is it as weird and mysterious or dangerous as so many believe. I believe the denial of the existence of DID is closely related to the denial of real repressed memories, and the denial of the extent of child sexual or severe physical abuse. So many people cope with their fear of the many hard and ugly truths in life through the use of denial. Others cope with their fear of the inability to know everything about reality by denying anything they can’t be sure has been utterly “proven” in scientific journals or through their own limited experience.
    Now I find myself struggling to learn the best approach I can use with my current adult client “system,” as I only treated one other adult whom I knew to have DID, (and of course, everyone is different.) It was my current struggle that led me to this webpage. I just want to thank Carolyn Spring for this excellent, well thought out and very well-written article, which has been enlightening and helpful to me, and which ought to have a much larger audience than this blog appears to have, judging from the paucity of comments.

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