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-IV) focused on the existence of ‘parts’ and required visible evidence of switching. But diagnostic criteria do not tell you what it is actually like to live with that condition. DID in my experience is strangely misrepresented: a caricature of it has formed in the public consciousness. Starting with Sybil, the media continues to pursue the more newsworthy, florid representations of DID and to present them as the norm. Typically this is DID with a churlish Kevin-esque 13-year-old ‘part’ suddenly intruding upon the 50-year-old female ‘host’ (as if she is carrying some parasitic alien) and then disappearing to be replaced by an eager, cutesie 6-year-old.

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-on-the-wall style piece. They were very enthusiastic about it. It would raise awareness, make people understand what DID was all about, bring it into the mainstream. A camera crew would follow me around all day for a whole week. At this point I simply had to interject: ‘I’m sorry,’ I said, ‘but I’m just not that interesting. Mostly all I do is stare at a computer screen, and type. My parts don’t come out when I’m working. In fact, mostly nowadays my parts don’t come out at all except in therapy, and you’re not filming that. I’m really quite dull.’

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-one doubts that. It is the most bizarre, the most frightening and perhaps the most shameful aspect of the condition, and that is undoubtedly why it garners so much attention and morbid fascination, as well as hostile incredulity from deniers. But I believe that a skewed emphasis on the phenomenon of parts can be detrimental—because there are many other aspects to life with DID. The symptoms of DID are the symptoms of unhealed suffering and that suffering manifests in a variety of ways, not just in the presence of parts.

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-hanging, ubiquitous thunderclouds of shame; battles with denial and perception of ‘truth’; somatic impacts; difficulties differentiating past from present; and the many other widespread disintegrative impacts of trauma slavered over our entire functioning and personality.

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-taking between parts. While my switching now is mostly controlled and manageable and even ‘logical’, I still have a lot of work to do in the many other areas I highlighted above: if only ‘parts’ were all of the problem…

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-and-now, learning to anticipate and plan and care for myself, learning to take into account my various needs at the multi-storey levels within myself, switching has become less and less spontaneous and more and more a matter of choice. My therapy session, my ‘controlled explosion’ as I put it, is the safe place for parts to come out now. It has become an increasingly private affair as I have learned that it is healthy to have boundaries and that privacy is not the same as secrecy, and privacy is okay.

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-giving aspect of being landed with a label.

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-gaining medication, then the label gives us very little reassurance or hope. If however we see DID as a condition that is entirely logical and natural and normal—a creative and adaptive response to survive otherwise unendurable trauma—and if we recognise that it is a condition with a very positive prognosis, as per recent research studies (Brand et al, 2009a), then the label can be helpful. If we see others who have made significant progress in their recovery and are leading fulfilling, successful lives, then there can be palpable relief from embracing the label. We do need more ‘survivor stories’ of recovery to become available in the DID literature to encourage people towards hope and a belief for a better tomorrow.

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-compensate and we become more dissociative. For people who would otherwise be strangers, it is all we have in common: unconscious group pressures can end up inviting us to exaggerate our dissociativeness to fit in. Having parts, and displaying parts, can become a kind of membership card by which we prove that we belong to the group. This can redirect us from the safe expression of parts within the privacy of the home or the safety of a therapy session and towards an ‘alter-centric’ way of relating to others. The label starts to dictate to us.

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-based DID, not just ‘normal’ DID’. I would always argue that our subjective experience of trauma is what counts rather than tally points from some external ‘scoring system’; and I would also argue that for many of us the rejection and abuse from our mothers is harder to bear than even the most terrifying of organised or ritualised abuse. Sometimes claims of polyfragmentation and ongoing abuse and victimisation can become a kind of ‘badge of honour’: it can be an earnest, unconscious demonstration proving that we cannot recover, rather than the tragic reality of overwhelming suffering that will take a lot of hard work and dedication to overcome.

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-year-old little girl part. I am there with the smack-in-the-face reality of her deep longings for love and acceptance, her attachment drives, her magical thinking and desperate need for protection. Or I am there with Charlie, my fierce 8-year-old warrior part, acerbic and feisty with the burden of guilt of forced perpetration. These are very real, very incarnate parts of my personality. They exist, they feel, they think, they want, they hope, they despair. But they are not all of me and they are not the bigger picture.

If I zoom out, there is the whole of me, the me-as-we that comprises every single one of those precious, unique parts. And I can begin then to see that my parts have a function and a meaning. So there is a reason why Diddy is a little girl and aged about 4. She was the one who was able to elicit care and soothing from the people around me—something that I have been more or less incapable of doing. She was the one with her attachment needs still intact, who wanted to love and be loved, devoid of the cynical mistrust and angling-for-rejection of my teenage parts. Diddy was little and vulnerable and loveable, and represented parts of me that I had walled-off and dissociated from, that I could not express as adult-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-something woman curled up under the desk and speaking in the voice of a child. As I began to acknowledge and recognise Diddy’s feelings and thoughts and memories and beliefs as my own, I spontaneously found that I needed less and less to actually ‘switch’ to Diddy to get those needs met. Instead I became able to tune into what the Diddy parts of me were saying and feeling and wanting, and to respond to that from within my adult self. If I hadn’t been able to zoom out from the close-up of Diddy, I wouldn’t have been able to place her and relate to her within the context of the whole of me.

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-message of ‘here and now’, in a way that young children can only see and hear and feel from the immediacy of what they are currently experiencing. I needed the ‘mindsight’, the mentalising ability to go wide-angle and zoom back out to see myself not just as a jumbled and mostly disconnected conglomeration of ‘parts’ but as a person, unified although still disconnected, and a person who exists in a social setting wider than just me-as-we.

This wider social context exists on a number of different planes: the me as part of me-and-Rob, the me-as-client, the me-as-friend, the me-as-colleague. This is a wider world that involves other people. We certainly don’t mean to become selfish and self-centered, and mostly we are mortified to realise that at times we fail spectacularly to empathise with others. Seeing others as a threat when they are just trying to help us, recoiling from their comfort-laden touch, ignoring their tiredness through our own hyperactivity—we don’t mean for this to impact them negatively, but often it does. The dominating screech of trauma in our lives renders us partially deaf to others, with regretfully less energy and time and focus and attention for those around us. I had to forgive myself for that, to give myself a break for my ‘failures’. But I also had to realise that sometimes I needed to step back from my obsessive attempts to solve the riddle of trauma and dissociation in my life, and actually take into account other people as well.

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-in just at the micro-level of myself and my parts. I could have stayed zoomed-out just at the level of myself in my therapy and family world. But instead I was being invited to zoom out to the wider context of human suffering, and to see my place in it. I felt insignificantly small. But strangely, this did not make me feel that my suffering was any less, that my suffering was in any way insignificant or did not matter. I was not left with a sense of hierarchy or competition, of ‘Victor Frankl’s suffering was worse than mine, so why am I complaining…’ Instead it left me with a raw, persistent sense that I needed to survive.

I needed to get through this suicidal patch. I needed to weather this epoch of months-becoming-years of therapy. I needed to start functioning again and I needed to be able to do something.

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-melting realities of the vastness of space and the minute insignificance (and yet overwhelming significance) of ourselves on this delicate blue-green marble suspended in a void. This was to me a panorama of unimaginable magnitude which became a source of both inspiration and reassurance and which conversely fuelled in me a desire to engage more purposefully at the ‘quantum’ level of my parts. What it did was remind me that I am just a human being. I am precious and I am valuable, but I am not different or unique. I am not in some discrete category of my own: ‘woman with multiple personalities’, as if there is the human race, and then beyond that scale there are people with DID. The zoomed-out perspective helped me see that I am normal, I am human, and that there is nothing that has happened to me that has not happened before and that will not happen again. And within all of that, I am not even ‘special’.

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-meaning though much of the interest in me and my story was, it left me at times feeling uncomfortable and as if it were robbing from me my innate, ‘normal’ humanity.

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-denying internet ‘trolls’, but often any attention is better than none. But this can just perpetuate the cycle of psychological and emotional abuse in our lives. We do not resist it, because we have become conditioned to accepting that we are not really human and that we do not really have any rights, and that this is the way that it ought to be. Better to poke us with a stick than ignore us altogether.

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-centeredness or egotism or laziness or cowardice, all of which lie latent within me. She views me as a human being just like her. She does not patronise me, or treat me as if I am ‘special’. She does not relegate me to some sub-human category of being, or deride me with a label. She welcomes each of my parts, and there is not the least flinching surprise when any of them appear in our session together. But they appear for us to continue our work, at the frontier edges of my psyche, labouring to try to integrate all of me into some connected ‘whole’—my parts, my experiences, my feelings, my memories, my body, my thoughts, my attachments, my beliefs, my boundaries, my perceptions, my shame and all the unhealed suffering that seems to go on forever deep within me. Sometimes I need dissociation still to cope with it, but slowly that need is ebbing away, and slowly a more complete version of ‘me’, the sum of all my parts, is emerging.

I see it as the mental equivalent of joined-up writing: none of the letters lose their significance, their meaning or their existence. But they all begin to join together to form words and sentences and prose, which carries a greater impact than any single letter or digit on its own. The parts of the personality form together to create a unified, meaningful whole.

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.