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Living with the reality of dissociative identity disorder campaigning voices

CHAPTER ONE

Introduction
Pat Frankish

This book aims to bring together the threads that make up the campaign for people with Dissociative Identity Disorder (DID). The many threads reflect the multiplicity of the condition and this will become apparent as you read on. Weaving the threads together should be healing and that is one of the aims of the campaign. The mul-
tiplicity is both rich and confusing. Supporting people with DID can be exhausting. Living with it is both confusing and exhausting. DID is a survival mechanism and reflects the strength of the basic psyche to survive experiences that would drive some to psychosis.

The Clinic for Dissociative Studies (CDS) has taken a lead in the diagnosis and treatment of people with DID. Valerie Sinason has been a major contributor to the sharing of knowledge and raising the profile of this disabling condition. She has also been influential in highlight-ing ritual abuse as one of the main causes. This situation has led to many attacks from people who try to conceal their identity and role in the horrific abuse that people with DID report. Valerie, in particular, who has been willing to be named and to speak out, has been attacked in the press and on the internet. She continues to be brave and withstand these attacks, and is well supported by her colleagues to do this. The Bowlby Centre, looking at attachment and how this has been

2 LIVING WITH THE REALITY OF DISSOCIATIVE IDENTITY DISORDER

damaged in people with DID, offers further interventions. These two organisations have pioneered the therapeutic work with people with DID. Many people with DID, including some of the contributors to this book, have endured life without the benefit of formal therapy directed at the condition. They have found their way through the maze and survived. Their work is testament to their courage and strength.

A recent article in the Observer (December 2011) paints a distorted picture of the condition and the causes, leaving ordinary readers confused and perhaps thinking we are all mentally deranged. It is hard to believe that people will harm their own children the way they do, but that is not sufficient reason to fail to believe the real-life experience of some very brave and distressed people. It is inevitable that this book will involve many references to ritual abuse, but it is primarily about survival and living with the consequences of life experiences that attempt to destroy the self. Of course, it is the core identity that is attacked in ritual abuse, as this ensures that the person on the receiving end can often be discredited as an unreliable witness.

My own role has been in the development, registration, and running of the Paracelsus Trust. This is a registered charity, with the objective of supporting the people who attend the clinic for things that are not funded from their care package. The initial benefactors were Pearl King and Tina Carlile. Sadly Tina is no longer with us but she left a bequest in her will to support the charity. The trust has engaged in some fundraising but relies primarily on legacies. It has been, and is, within the remit of the trust to support the campaign and we were pleased to be able to provide some financial support for the campaign meetings in March 2010 as well as for people attending, to ensure that the days were a success.

The original Paracelsus was an early advocate of medical interventions, with a wide approach to what might work. He was often rejected for his ideas and spent much of his time wandering around the world looking for acceptance. He was a brilliant man already very capable by the age of sixteen. He died in 1541 after a short illness, with some admirers of his skill and knowledge of alchemy, and others who rejected him outright. There are so many similarities for people with DID and those who work for them that it seemed a good name for the trust. He was a leader in his field and he persevered even after rejection. No doubt this sounds familiar to many people reading this book. Paracelsus is another thread in the weave.

INTRODUCTION 3

Amelia Roberts was funded by the clinic and the trust to carry out the administration of the campaign days, and we thank her for this. The first day was for survivors and their therapists. The second day was for parliamentarians and commissioners of services. Attendance at both as significant and a considerable amount of information was shared. We are optimistic that more developments will follow and that, in time, people with DID will receive the services they need, and ritual abuse will be brought into the open and stopped.

The Paracelsus Trust is independent of any of the organisations that are represented in the campaign, and this independence allows the trustees to help without creating schisms in, or between, the activist groups. Everyone who contributes is valued and necessary, but it is interesting to note that there are so many different organisations, making it look like a replica of DID. It would be good to see everyone come together in an integrated way and perhaps Paracelsus can help with this. I have retired from the chair of the trust but continue as a trustee and it would be a delight for me to hear that the separate groups were able to combine their energies for the benefit of all.

My studies over the years have taken me into systems and what makes organisations function in the way they do. Individuals in organisations sometimes can’t recognise what happens when it is far removed from their own position. Systems reflect the pressures that come from inside as has been well documented by Obholzer et al. (1994). There is a system within the person and a system that the person lives within. The total system is the whole of society, but people exist within microsystems, sometimes family, sometimes support services and, of course, for people with DID, often within a cult. The power of systems should not be underestimated. Ritualised abuse can produce systems with internal destructive systems as well as the fractured personality that enables power to be retained by the abusers. The systems within systems are confusing and exhausting for the individual affected and for those who support them. It is common for people with DID to refer to their body and their internal system as separate entities, making statements like “the body’s age is …” and “within my system there are many alters, all with their own role”. It is a joy to meet people with DID who have found a way to live a good life and some of them have written chapters in this book.

The internal system of someone with DID is fragmented and only has some communication lines on the inside. A communication book,

4 LIVING WITH THE REALITY OF DISSOCIATIVE IDENTITY DISORDER

where each member of the system can write, enables them to find out who is there, but no one has a picture of everyone who is there, their individual roles, or a shared history. It falls to the therapist or other supporters to help to establish a full history, from the information provided by each of the alters, and to try to enable the present host or group to accept this and live with it. There is grief over the loss of alters who disappear, although it must be at least possible, and maybe likely, that the ones who disappear have served their purpose in keeping the body alive and the mind stable. Kim Noble, in her book All of Me (2011) and her chapter here, shows us how the different people who share her body can communicate with each other and the world through art. Each of her personalities has an individual painting style, making them identifiable and distinct from each other.

People with DID are survivors. They have endured horrific experiences. The way that their psyche has fractured has allowed them to survive physically and not be killed or kill themselves. The horror of their childhood has been managed through the process of splitting off so that most have no memory of what happened. Those who do suffer begin to be able to talk about it, but this can be restricted to the times that they are aware of being “out”. Coping strategies become very complex and intricate, with switching happening to ensure the safety of the whole body. These themes are developed in this book.

The chapters are all written by survivors until the last one where Orit Badouk Epstein offers a brief summary and some closing thoughts on the processes involved in the campaign meeting and the writing of the book, which in itself has been a process of bringing together diverse information. Each chapter has an internal coherence, recognising that the authors have reached a level of integration in their survival journey. We hope that together they provide a link to the book and the campaign, enabling all of us to continue in the endeavour to bring these very real issues into a wider consciousness in the public arena.