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What it's like to live with dissociative identity disorder

Posted March 01, 2017 15:27:27

I'm 52 years old now, and I spent most of my life living as multiple, with what is technically called dissociative identity disorder (DID).

I was officially diagnosed in early 2002, when I was in my late 30s. I had been quite successful in my study and my career. I had a family.

I thought my life was going well, to be honest, or at least the parts of myself who were living my life at that stage thought things were going well.

Acting normal

None of my parts ever showed themselves blatantly as different or separate to anyone else, other than my therapist. You want to pretend and act as if you are normal.

In my late teenage years, when I was still in an abusive environment, I was diagnosed as bipolar. It was interpreted as: "Oh, her mood is changing. Suddenly she is depressed; suddenly she is manic."

They weren't seeing that I was switching from a shut-down and traumatised part to suddenly being a part that is extroverted and having fun.

Nobody bothered to ask what was happening to me.

Extroverts and introverts

There were a lot of identities. It would be hard to describe them all.

There was one who just liked to have fun, who was good at sport, things like going skiing. She was good at teasing people and being social.

There was another who was good academically, who had no connection with the body at all, who wouldn't have been able to ski for the life of her.

Some people say there are parts that have no memory at all and no knowledge of what others do. Others say there is overlap where parts have awareness of others.

For me it was mixed. Some parts knew there were other parts, others didn't. Some parts did have some awareness of what others were doing and what others felt, whereas other parts didn't.

Where the trauma came from

The trauma was centred on what happened in my nuclear family. It was extremely dysfunctional.

Starting from when I was an infant, I was treated in ways that were hurtful and painful and terrifying. It was physical, sexual and emotional abuse for over 20 years.

A lot of times I believed I was going to die. I think that is at the core of why a lot of these separations happen, that you believe you're going to die.

For much of my life there were parts who had no idea that much of this happened, and when people asked, answered that: "I had a fine childhood, I grew up in a good family, and everything was fine."

Discovering the disorder

Although I had been diagnosed as bipolar, parts of me knew that was wrong because the so-called symptoms disappeared when I travelled overseas, which isn't supposed to happen if you are bipolar.

Being overseas, the parts that were distressed had no reason to show themselves because I wasn't at risk from the people who had been my abusers.

Eventually I started my own family. My children were still young, but they reached the age at which particular forms of abuse started for me.

At that point that reminder was too powerful a trigger to remain hidden. These parts who had experienced things for me at those ages started to appear and show themselves.

I was very distressed and needed help. But I had no idea what I needed help for.

The treatment

The treatment is best described as long-term psychotherapy.

We began to learn that someone else could be safe enough for all the different parts to show themselves and develop a relationship with them. Gradually the parts feel safe enough to express more and more of what they know, what they feel.

As all the parts speak to one consistent other person, who is good enough in how they relate to all parts and respects all equally, the parts begin to learn to cooperate.

We wrote in journals, so other parts would be able to read what one part had written or what one was doing. We'd keep track and learn to communicate inside our head more.

I worked through to be able to contain co-consciousness, when all parts are present and aware of what's happening in the world and functioning together cooperatively. We gradually learned to tolerate the overwhelming feelings contained in separate parts.

Finally, for me, with no effort or intention or anything, the parts just blended together. I have one whole self now and have had for some time.

In the movies

I haven't seen the movie Split, and I'm absolutely not going to. I'm appalled particularly because it portrays the person with dissociative identity disorder as a perpetrator of abuse of children.

I spent a lifetime doing absolutely everything I could to not be like those people who abused me. Every single bit of energy was put into being different to them, even though I had parts who would have been capable of being aggressive.

I believe that people with DID have an overall personality, because all the parts work as a system. Even if a part may want to do bad things or hurt someone else, if that behaviour is unacceptable to the system, that part won't be allowed out to do it.

I find that the most hurtful aspect of this movie. It's extraordinary abuse of people who are already extremely marginalised, because the amount of stigma and sensationalism about dissociative identity disorder in the community is extreme already.

What it's like to be treated

I feel better in myself now, but it's a controversial question because it's something that's not right for everyone.

I wouldn't want to suggest that everyone with parts should even aim for or even consider it. I certainly don't think I aimed for it. It just ended up that way.

I miss my parts at times. There was comfort in having others inside you who you know and can communicate with, a sense of never being alone.

There are times I miss this sense of, "oh, I've had enough of this, someone else come and take over for me". But overall I'm glad I'm like this now.

Kallena is a Melbourne-based social worker, counsellor and advocate for survivors of childhood trauma. The art used in this article was produced while she was in therapy.

Topics:mental-health, health, child-abuse, community-and-society, australia

What is dissociative identity disorder?

  • The condition was once known as split personality or multiple personality disorder
  • People feel they have at least two alternate personalities or "alters" taking control of their behaviour
  • Despite appearing in the official psychiatry manual since 1980, it remains controversial
  • Movies and TV — including the new film Split — have been criticised for perpetuating stigma
Source: Sane Australia

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"There's a new movie out about a person with DID. It's a thriller/horror movie," her patient wrote, referring to M. Night Shyamalan's latest movie. "Do I ever scare you?"
In Shyamalan's latest film, "Split," actor James McAvoy plays the villain, a man with 24 personalities who abducts and torments three girls in a windowless bunker. The film opened at No. 1 this weekend with more than $40 million in domestic sales. Though McAvoy, best known for his work in the "X-Men" prequels, has received praise from critics for his performance in "Split," the Hollywood film has faced criticismfor how it portrays mental illness.
Mental health advocates warn that the film stigmatizes dissociative identity disorder and may directly impact those living with it.
"You are going to upset and potentially exacerbate symptoms in thousands of people who are already suffering," said Deckel, a DID specialist at Mount Sinai's Icahn School of Medicine, immediately after seeing the film.
Amelia Joubert, 18, of Fort Mill, South Carolina, was diagnosed with DID three years ago. She lives with 11 other personalities, or alters. Even before she was diagnosed, the way she spoke would change throughout the day: sometimes with a Southern accent, sometimes like a small child.
Like most patients with DID, Joubert suffered ongoing trauma as a young child.
According to Deckel, people who have been chronically abused, typically in situations with no viable escape, may "reconfigure the mind" into different parts or personalities. Some of these parts can step in to handle traumatic or stressful situations, while other parts dissociate, or escape, from reality.
For an introverted Joubert, this may mean calling on her energetic alter, Scarlet, in large crowds.
Since beginning therapy, she has been able to better control and agree on the switches with her alters. For Joubert and many others with DID, the goal of therapy is not always to "integrate" the different parts back into one, but to learn to function and work together.
"She has been able to use them very effectively," said her therapist, clinical psychologist Bilal Ghandour. "There's no reason to disrupt that system, as she calls it."
"It really is a survival or a coping mechanism," said Joubert, who does not plan to see "Split."
In contrast with McAvoy's character, Deckel said, people with DID, who may represent over 1% of Americans, are rarely violent. Research has shown that they are far more likely to hurt themselves than to hurt others.
But movies tend to portray only "the most extreme aspects" of the disorder, she said. This can misrepresent a form of mental illness that is not well understood by the lay public, and even some psychiatrists, she said.
"In my residency, I don't even think DID was brought up," said Deckel, who believes that a lack of training and research is one reason why even some mental health professionals approach the disorder with skepticism.
Joubert, who has been hospitalized in residential and acute care facilities, said she often felt that her doctors did not understand or even believe in her disorder.
"I was tired of hearing this and feeling like I had to be ashamed of something ... that helped me survive trauma as a child," she said.
Joubert maintains a YouTube channel and manages a DID support group on Facebook with nearly 4,000 members. Many are people living with DID, but some are family members and clinicians.
"People are upset" about the film, she said. "They're feeling discriminated against ... but this is nothing new."
Like the patient who emailed Deckel, Joubert said people have asked whether she was dangerous. She works as a nannyand said one online commenter suggested that she should not be working with children.
Joubert said she thinks "Split" is having a larger impact for younger people with DID; they're less familiar with older films, such as "Psycho" and "Identity," that also contain violent characters with multiple personalities. She is afraid that "Split" may deter young people from coming out and seeking help.
"This is the first big movie they've experienced that has a stigma to it," she said. "It's hitting hard for that reason."
There are some more positive portrayals in the media, she said, such as "United States of Tara." In the Showtime dramedy about a suburban American family, Toni Collette played a mother who is diagnosed with DID. The series, which Joubert said was "overexaggerated, but had a lot of relatable things," ran from 2009 to 2011.
"At this point, any movie that doesn't villainize us is a win," she said.
Leah Peterson, 46, of San Diego, California, has written about her experience with DID and was brought on as a consultant on all three seasons of "United States of Tara."
When the trailer for "Split" came on in a movie theater, Peterson "had to get up and leave."
"It's not about the acting or the people who wrote it," she said. "But are you doing a disservice to the people you're portraying?"
Scottish actor McAvoy, whose representatives did not respond for comment,has said he was unable to speak to someone with DID in preparation for the role. Instead, he told "Today Show" host Matt Lauer that he "spent a bit of time with some medical professionals" and watched YouTube diaries made by people with DID.
"I couldn't find anybody that would sit and talk with me, unfortunately," McAvoy said.

Hoping to shape the conversation

Clinical psychologist Bethany Brand, a professor at Towson University, was contacted in late 2014 by Shyamalan, who was hoping to learn more about DID. They met twice in early 2015, once at his home in Pennsylvania.
"I understood it was a big gamble," Brand said, adding that she was not paid to speak with Shyamalan. "I hoped that I would be able to influence the movie."
Brand said she offered to help introduce people with DID to Shyamalan, who did not respond to CNN's request for comment. She did not speak with McAvoy or Joaquin Phoenix, the film's original lead.
Shortly after the trailer was released in July, Brand emailed the filmmaker to express concern.
"The trailer for Split is causing outrage among trauma and general therapists," she wrote in emailsshe shared with CNN. "Do you plan to do anything to help the patients you are portraying as dangerous?"
Shyamalan responded that he and Universal Pictures were interested in promoting information and support for those with DID.
"When the film opens we will work ... together and raise awareness," he wrote.
Brand was also put in touch with a representative from Universal Pictures. She described their conversation as encouraging.
"And then, crickets," said Brand. "There was nothing."
Shyamalan told Yahoo Movies for a story published last week that he has seen no backlash over the film's treatment of mental health issues among people who have seen the final product.
"We've had no issues from people that have seen the finished film, just zero," he said.
The International Society for the Study of Trauma and Dissociation, a leading professional organization in dissociative disorders, of which Brand is a member, released a statement (PDF) today calling on Shyamalan and Universal Pictures to support DID research and education.
Joubert sent her own petition to Shymalan's production company, Blinding Edge Pictures, in September. With more than 16,000 signatures, it called on the actors to publicly affirm that violence is rare among those with DID in the form of a PSA. A similar petition calling for a boycott of the film was signed by more than 20,000.
Joubert did not receive a response to her petition.
"I feel like the DID community is being ignored," she said.
Joubert said that she is not against people seeing the film but that she hopes for more education about the realities and misconceptions of DID.
The movie portrays the negative side of something in which many have found positives, according to experts and people living with DID.
"The brain is amazing that it's able to do this," said Peterson, a mother of four.
Though Peterson no longer has alters, she credits them with getting her through traumatic periods in her life and said she understands the role they play for many people with DID.
"They are some of the strongest, most big-hearted people you will ever meet," she said. "And you know some of them."


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