I have Dissociative Identity Disorder. I have many separate, distinct and unique ‘parts’ of my personality. My ‘parts’ or ‘alters’ collectively add up to the total person that is me. I am the sum of all my parts. They are each a letter, and I am a sentence.
At times, different parts take ‘control’ of my body, mind and behaviour—this is switching and it can be obvious or subtle. The part who comes out, who takes over, may be known by a different name, may perceive themselves to be a different gender or age, and most usually will view the world very differently to the way that I do.
Confusing? Weird? Fascinating? Well yes and no. Parts are the fundamental, basic building blocks of this phenomenon previously known as Multiple Personality Disorder. People who have never encountered someone’s parts sometimes suggest that it’s a controversial diagnosis, but the evident reality of DID is unmistakeable and irrefutable once you have. After a little while, it just becomes normal. It stops being confusing, weird and fascinating. And then, and perhaps only then, can you see beyond the label to realise that it is caused by chronic, repeated early life trauma occurring on an existing faultline of disrupted attachment. DID does not develop for no reason.
When you appreciate that DID almost always results from extreme trauma, you can perhaps begin to understand why people do not want to believe that it exists—because they resist acknowledging the causes. It is easier to deny the impacts of childhood abuse than face its reality.
For many years, the diagnostic criteria for DID (for example up to and including DSM-
And this media view of DID is something that for some time has been particularly close to my heart. On numerous occasions I have received requests from different TV production companies to participate in a documentary. I discussed one request at length. They wanted to a do a fly-
The producer was suitably disappointed that I was dispelling the myth that everyone with DID lives in an uncontrollable whirlwind of frenetic and very public switching. For those who do, it is dubious whether allowing a TV company to film it would be at all conducive to their mental health. It seems to me perilously close to a ‘circus act’, being exploited for the entertainment on Channel 4 of the mocking middle classes.
Having parts and switching is fundamental to having DID—no-
For me, my initial focus on the multitude of ‘parts of my personality’, eagerly mapped out in early therapeutic work until we lost count at over 100, has gradually given way to a more panoramic perspective. There are many facets to life with DID: powerlessness or ‘learned helplessness’; difficulties with managing my feelings, also known as ‘affect regulation’; relational issues around boundaries and maintaining or even attaining a solid sense of self; the low-
So DID for me is this vast billowy blanket of impacts and consequences that covers every area of my life and is expressed much more extensively than just in conflict and turn-
Indeed, the consensus of experts that wrote the Guidelines of Treatment of Dissociative Identity Disorder, published by the ISSTD (2011), says this:
‘…therapists who are experienced in the treatment of DID typically pay relatively limited attention to the overt style and presentation of the different alternative identities. Instead they focus on the cognitive, affective, and psychodynamic characteristics embodied by each identity while simultaneously attending to identities collectively as a system of representation, symbolisation and meaning.’
In other words, parts are important, but the biggest clues can come from figuring out what they mean and represent. Why are they ‘part’ of the whole? How do they fit into that whole? What has caused them to be separate from the whole? What is their role and function in the system as a whole? What is going on here?
In her book Understanding and Treating Dissociative Identity Disorder, Elizabeth Howell astutely describes DID as a ‘disorder of hiddenness’ and comments that according to Richard Kluft ‘only about 6% of those with DID exhibit obvious switching in an ongoing way.’ This resonates clearly with me. Only a very few people who know me have ever seen my parts. As I have gained more control over my symptoms, learning to manage my emotions within a ‘window of tolerance’, learning to ground myself and orient to the here-
Back in the months of intense struggle from 2005 to 2008, DID was very much a ‘disorder of hiddenness’ for me, the epitome of shame. I wanted nobody to know. For many of us, the hardest part of living with DID is concealing it so that we are not ostracised or labelled as ‘weird’. We fear people’s fear, and thus their rejection. Many of us therefore do our best to conceal our parts—the many people I know with DID who work as social workers or nurses or teachers or carers or in business cannot afford to ‘let things slip’ and it is often that pressure, of keeping everything tightly controlled whilst at work, that causes their greatest difficulties. Few of us believe that employers would really be sympathetic and helpful if they found out that we were a ‘Sybil’: it is not what we truly are that we always fear, but what people assume that we are, based on myths and caricatures. Managing anxiety is often harder than managing parts.
For many of us, our main symptoms are invisible. The focus on ‘parts’ eclipses these more subtle struggles: our disordered or chaotic eating; our catastrophic or paranoid thinking; flattened feelings and a chronic sense of emptiness; even the frequent amnesic episodes that we may experience throughout the day—we do our best to hide these, to ‘act normal’ and to brush over our lapses and blame them on tiredness or inattention or age. We ensure that very few of our symptoms are actually visible to the outside world.
DID is a label that can be adaptive because it can enable us to seek appropriate help. That help is only rarely forthcoming through the NHS but, in the private sector at least, knowing what we are dealing with, and having a therapist who knows what they are dealing with, can be a good thing. And the label can come as blessed relief after the chaotic muddle of a breakdown, where behaviour and feelings and reactions make no sense and so therefore reek worryingly of craziness and insanity: understanding that your reactions are normal, that other people act and think and feel the same way as you do, is probably the most liberating, hope-
But this depends on what the label looks like. If it hints darkly at a lifetime of psychiatric ‘revolving door’ treatment, a future bleak with wrecked ambitions, failed relationships and weight-
The label can be adaptive but we can also adapt to the label. Even unconsciously, we can end up figuring out how we’re ‘supposed’ to be with DID. Via social contagion, we can start to take on the traits and characteristics of other people we meet or know with DID and in contravention of clinical advice (for example, again, the ISSTD Guidelines), we can end up with increasingly elaborated and increasingly dissociated parts of our personality. It is a powerful thing to be amongst people who fully accept and understand why you have parts. And sometimes, after living so long in hiding with a suffocating fear of stigma and discrimination, the result can be that we over-
At other times I have observed the development of a kind of competitiveness among people with dissociative disorders, as exists in every other domain in life. It is not overt or spoken, but a kind of hierarchy based on perceived degrees of traumatisation or dissociation can develop: ‘I’ve got more parts than you’, ‘I have mind control-
The net result for many people that I talk to is that they end up feeling as if they are not ‘proper DID’. Measured objectively against diagnostic criteria, they tick the boxes; even their phenomenological experience extensively matches that of most other people’s. But the lingering, murky doubt remains that they are not ‘DID enough’ compared to others. This is where Richard Kluft’s statistic comes in though, where only 6% of people with DID manifest it obviously in an ongoing way. It is therefore logical to assume that if we base our perception of DID on the 6% who shout the loudest (or display their parts the most overtly) then we will be misrepresenting DID, not as the ‘disorder of hiddenness’ that it really is, but as the cockeyed media representation of The United States of Tara. So the label can be adaptive, but not if we then adapt to the label and feel that we have to be more ‘obviously’ DID than we are. By hiding our symptoms, we are actually being consistent with the vast majority, the 94%.
The reality is that parts are just that: an important and fundamental part of having DID but not the whole. We can be dissociative about being dissociative. A helpful analogy for me has been that of having perspective and being able to zoom in and out. When I zoom in, I am right there with one or more of the parts of my personality, for example with Diddy, my 4-
If I zoom out, there is the whole of me, the me-
And it was so much more helpful to try to figure out what Diddy was all about, why I needed a Diddy part to be separate from me, to try to discern what it was that I could not bear facing or feeling, than it was for everyone (myself included) to gawp at a 30-
But I needed to be able to zoom further out, to beyond myself. Trauma has this terribly narrowing effect of zooming us into the details and we can become almost autistically focused on the micro-
This wider social context exists on a number of different planes: the me as part of me-
And then, to zoom out even further, there is my place in society. One of my lowest points was in 2008 after I stopped work as a foster carer, which I had loved. Fostering had been a suitable outlet for my ravenous need to overcome evil with good but it is incredibly demanding and in the midst of seemingly unending trauma work in therapy I knew I needed a break. I lapsed into an intensely dark, suicidal phase. After one particularly perilous night, in a particularly perilous week, my therapist suggested that I read Victor Frankl’s book Man’s Search for Meaning. It amuses me still that a therapist should suggest to a suicidal client that they cheer themselves up by reading an unapologetically gloomy book about the atrocities of the Nazi concentration camps. But it had a profound effect because it zoomed me out to the level of society and made me realise that in my suffering I am not alone. I am not alone. No, and I am not even unique. In the bizarrely wise words of Battlestar Galactica, ‘This has all happened before, and it will all happen again.’
I could have stayed zoomed-
I needed to get through this suicidal patch. I needed to weather this epoch of months-
I realised then, in a way that has been etched into my understanding of suffering ever since, that powerlessness is the core essence of trauma and that my battle was not with DID or parts or even the trauma itself. My battle was against powerlessness. I needed to rise up against it, to find meaning in what I was enduring and had endured, and to make something out of it. That story of concentration camp suffering—the unspeakable horror inflicted on human beings by inhuman beings—sparked in me an explosive desire to recover so that I could help to stand against this inhumanity as I saw it everywhere around me: in sexual abuse, in human trafficking, in domestic violence, in exploitative working conditions, in rape, in female genital mutilation, in the lack of running water for 3 billion people in the world and in countless other ways.
Since then I have zoomed out even more. I began to rediscover the natural world. I began to rediscover the stars in the sky: the billion stars in our galaxy, the billion galaxies each of a billion stars in our Universe—these mind-
It is this concept of specialness that began to fascinate me. It is a strange experience to stand up in front of a group to deliver a talk or a training day on the subject of DID and be met with a sense of fascination (sometimes morbid), of curiosity or of bemusement. A thousand questions pour out of a thousand mouths: what is it like to switch, are you aware of doing it, can you control it, why did nobody notice the abuse, how do you feel about your perpetrators, have you always known that you have parts?
And it struck me how many people saw me as being ‘different’ because I had DID. And I came back, time and again, to a fundamental belief that I hold more firmly today than I ever have done: that I am not special; that I am certainly not a ‘circus act’ for people to queue up to see, and prod with sticks as they would in the days of Bedlam. And well-
I have come to believe with fervent passion that the focus on multiple personalities is missing the point. DID is not rare; it is not unique; it is not special. It is just a logical set of symptoms to some terrible trauma. It is a normal way to react to very abnormal childhood treatment. In fact, I only have DID because I am normal. If I had not reacted normally to chronic trauma and disrupted attachment, I would not have developed DID. Trauma tried to tell me that I was not human and that I should be excluded from humanity. An overemphasis on parts blotted out the other equally significant impacts of trauma such as somatisation and the difficulties we have with ascribing realistic meaning to our circumstances.
Making us out to be ‘special’, even if positively intended, making us the subject of TV documentaries for people to ogle at, can have the effect of further separating us from the normal spectrum of humanity. And it can blend dangerously with our innate, traumagenic sense of worthlessness and shame, to offer us an identity in being ‘special’ that can bring with it at least some attention. It may be negative attention, in terms of stigma and discrimination and the unutterable attacks of some DID-
But I have come to believe very strongly indeed that I am not special, that I am not weird, and as a result I do not want to show myself off in a sensationalist way. I am a normal person who has responded in normal ways to some abnormal treatment: DID is no more exceptional than the colour of our skin having adapted over long periods of time to environmental exposure to the sun.
I have been helped enormously by working with a therapist who does not gawp at my multiplicity but who demands growth and forward movement from me every single week. ‘DID is not an excuse for bad behaviour,’ she told me at an early point. Or self-
I see it as the mental equivalent of joined-
And I, and all my parts, want to write some great prose with my life. Parts are not the problem: parts coming together are the solution.
© PODS 2012