It’s one of the most feared mental illnesses, but, as Ruby Hamad discovers, not only do people with dissociative identity disorder rarely hurt others, behind their illness is a remarkable story of unimaginable trauma and survival.
Abused as children, feared as adults: the extreme trauma behind dissociative identity disorder
“I’ve never known life without pain. For years I went from psychiatrist to social worker to psychologist only to be palmed off yet again. Finally, in August 2008, I went to Dr Leonard and told him my story and – I’ll never forget it – he said, ‘I can help you’.”
Ten years ago, Shelley, now 36, was waking up in alleyways and other strange places with no clue how she got there. “Then he said, ‘I think what you have is dissociative identity disorder’, and he explained it to me and I was like, Huh? That only happens in movies.”
It’s not surprising Shelley couldn’t relate her own experience of dissociative identity disorder (DID) to its depiction in cinema. As Split, the recent M. Knight Shyamalan film, shows, Hollywood is fond of associating mental illness with extreme and unrepentant violence; one of the ‘alters’ – alternate personalities – in Split is a misanthropic murderer.
Nor is it surprising filmmakers are drawn to DID, formerly known as multiple personality disorder or ‘split personality’; the idea of several, distinct personas dwelling in the same body is fertile ground for cultivating mystery and suspense.
But fiction though they may be, films enter the popular consciousness and are complicit in the perpetuation of negative stereotypes. When told about her condition, Shelley says some people, “move away from me or ask if I want to kill people.”
When it comes to how society perceives and reacts to mental illness, it seems there is no such thing as ‘just a movie.’
The tragedy, criminology professor Dr Michael Salter tells me, is that DID sufferers very rarely hurt other people. Salter, who researches pedophile rings at Western Sydney University and sits on the scientific advisory committee of the International Society for the Study of Trauma and Dissociation, has extensively interviewed more than 40 DID sufferers.
“People with DID have had such malformed childhoods, it is almost without exception really shocking and really difficult for anyone to wrap their heads around because it often involves really gross betrayals of trust,” he says.
And while they may feel anger and aggression as a result, they tend to internalise rather than externalise it. “They attack themselves, they don’t really attack other people. When they do get in trouble with the law,” Salter says, “it’s often a self-harm incident because they’ve cut themselves and they’re holding a knife.”
This exact scene played out in Shelley’s early 20s. “You know how when you wake up in the morning, you’re still drowsy and it takes you a while to wake up? It was like that – except I woke up in an alley with a massive knife in my hand and cops screaming at me to put my weapon down,” she pauses.
“I wished they would have just put me out of my misery.”
For twenty years, from age five until 25, Shelley was sexually abused, threatened, and socially isolated by her father, who is now in prison.
As a young adult she knew something was wrong but had no idea what, “I would go missing. I would literally disappear and cut myself or overdose.” Although she was ‘switching’ to one of her alters, as far as she knew, “I’d gone to bed the night before and that was it.”
When these “episodes” began to damage her relationships, she knew she needed help. “I was starting to get accused of stuff I had no memory of. A really good friend told me he liked his housemate – and one thing I really know how to do is keep secrets – but apparently I blurted it out and I had no memory of that. It took two of my friends who I trusted to tell me, yes I did say it. I was bawling my eyes out because I was so horrified I had betrayed his trust.”
I would go missing. I would literally disappear
And so began years of stigma in the mental health system. “I’m trying to get help and no one can help me, but they all found my story “fascinating”; I was starting to feel like a freak.”
Shelley began to self-harm and made multiple suicide attempts. "I didn’t know what was happening but my DID was getting worse so I was drinking and getting high to mask it."
A series of hospitalisations and a misdiagnosis of borderline personality disorder (BPD) only increased the stigma. “My mum started ringing psychologists, and she’d tell them about my depression and anxiety and that was fine but as soon as she told them I was diagnosed with BPD, they were suddenly not taking on any more patients.”
Although there is some overlap with BPD, DID is not a personality disorder, which are entrenched patterns of learned behaviour often involving strong emotional reactions. DID, as Sane Australia explains, is a dissociative disorder where sufferers, “lose contact with themselves: their memories, sense of identity, emotions and behaviour.”
However, says neuropsychologist Dr John McMahon, they can have similar origins.
“Structural dissociation occurs on a continuum from very mild to very severe and it occurs as a reaction to trauma,” McMahon, also a practicing clinical psychologist, tells me. “That can be the big ‘T’ trauma of abuse or the small ‘t’ trauma of neglect.”
Mild to moderate dissociation – the feeling of being detached from your body – occurs when “part of the psyche splinters off to contain that reaction (to trauma) so that the rest of the psyche – the daily living part – can go about the actions of daily living,” he explains.
In some personality disorders, “that splintered off part keeps getting triggered by external events and the person may not be consciously aware of that part of them being triggered, so they act as if that trauma is happening all over again.”
DID, says McMahon, is at the extreme end of structural dissociation. Rather than splintering off parts of the psyche, the sufferer develops a number of ‘daily living parts’ – or alters – “that go about the activities of daily living without necessarily knowing of (each other).”
Extreme dissociation is almost always a response to extreme abuse: research indicates DID sufferers have experienced more trauma than any other group of patients with psychiatric difficulties.
Nonetheless, there is skepticism the disorder exists, which Dr Salter blames on our collective unwillingness to listen to people with DID talking about childhood experiences we’d rather not acknowledge.
“DID is evidence of a whole set of social issues that we haven’t come to grips with yet and don’t want to come to grips with,” he argues.
“They weren’t protected as kids,” he says of the survivors of pedophile rings he has met. “And when they come forward for help as adults, they’re not believed either.”
For most of the 20 years her father abused her, Shelley was not consciously aware there was anything abnormal about their relationship. “I thought that was how fathers act with their daughters.”
Like many other survivors, she frequently blamed herself for not enjoying it. Subconsciously, however, her brain was already in survival mode: her first alter appeared at the age of five.
“When I was around five, (the abuse) became too much for the five-year-old me, so another personality was created to take my place. But that five-year-old-stayed.” This eternal five-year-old is Little Shell, the youngest and closest to Shelley’s own personality.
Then came Greg, “the mischievous one”, who is about 12. “A few years down the track and it would become too much for me and Little Shell, so I would switch to Greg the imp. He liked to get me into trouble by throwing pens around.”
Every time the trauma became too much for any of them, another alter would appear. Guy – “as in good guy” – is about Greg’s age, followed by the slightly older Steven with a V.
It’s like dreaming, you can’t interact with the environment but you are watching it
“I don’t know why that is important to him,” Shelley jokes. “But he is the organiser. He’ll tell us what we’ve got on, what time we have to leave, and not to forget this or that.”
The last two appeared in Shelley’s late teens. Hope, “was always deep and dark. Always miserable and helpless; she just didn’t want to live anymore.”
And last came Amy, the angry one who named herself. “She’s the one I call the bodyguard. Now I think of her as a protector but I used to be terrified of her. If I switch to her, I have no memory of it. But Amy was never violent – just angry.”
Shelly experiences “co-consciousness” with some of her alters – “It’s like dreaming, you can’t interact with the environment but you are watching it” – and they are all aware of each other.
The primary treatment for DID is phase therapy, which aims to eventually integrate the splintered parts back into one whole. The first phase establishes safety and stability, the second processes the memories and feelings around the trauma, and finally – after several years – comes rehabilitation, acceptance, and perhaps integration.
Shelley doubts integration will happen. “The little ones are not that keen on it. They think they’ll disappear.”
Nor is integration always desired by the survivor. For some, therapy is a means to interact with and manage their alters, learning to function by working together, even agreeing when to switch and for how long.
Whether or not integration happens, studies show phase therapy significantly reduces many symptoms of DID, including switching, depression, self-harm, and suicidal thoughts.
After ten years of therapy, Shelley still grapples with her symptoms – “The last time I switched was about two hours ago” – as well as the physical pain of chronic fatigue and fibromyalgia, which she also links to her trauma.
Understandably, she still resents her father for preventing her from having what so many take for granted; a career, children, a healthy body and mind. But she is also learning to accept what she has lost and appreciate what she has since gained.
“I am still alive,” she declares. “I am here and that is my legacy.”