In the middle of answering a question during a recent a phone interview, Karen Marshall, a licensed clinical social worker who specializes in — and lives with — dissociative identity disorder, paused for a moment as Rosalee interrupted the call.
“For us now, we can control it,” Rosalee tells me after I ask Karen how she manages her other identities — which she refers to as “the little ones.” Rosalee (one of the little ones) is a teenager who tells people she is 126 years old because she really wants to drive and doesn’t think people will believe her if she says she’s 16. She explains that at first, they were not able to control switching between their different identities in the body but eventually came to realize that if they wanted to be able to buy chocolate (and do other important things like pay taxes and bills) they had to let the “big one” — that’s Karen — come out during the day so she could go to work.
“If we wanted chocolate, the big one had to work and we had to stay inside,” Rosalee says, adding that the little ones may say something in Karen’s ear during the day, but for the most part, “agreed we’d leave the big one along during the work time.”
What is DID?
Once Rosalee finished, Karen got back on the phone and explained that most people living with dissociative identity disorder — formerly known as multiple personality disorder — including herself, experienced severe trauma as a child, whether that came in the form of health issues, abuse, bonding issues with caregivers or a combination of the three.
Dr. Jagdish Khubchandani, a professor and researcher who specializes in public mental health and health promotion at Ball State University, echoes Karen’s explanation that adverse childhood experiences are a primary cause of DID. In addition, he says that people with DID frequently have other mental health conditions like depression and PTSD, which can make the diagnosis and treatment difficult, and that females are more likely to be diagnosed and affected by the condition.
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“The prognosis is often uncertain and bleak — symptoms may come and go,” Khubchandani explains. “However, some treatment is absolutely necessary. Unlike depression or anxiety that may resolve on their own, DID will not. Patience is the key, and prolonged attention, counseling and support are a must.”
The importance of support is something Karen advocates as well, which is why she runs a group for other women living with DID featured in an upcoming documentary called Busy Inside. Through this film, director Olga Lvoff and producer Victor Ilyukhin aim to shine a light on a condition that is often dismissed or misrepresented in the media and popular culture.
“The film will inspire audiences to question their own identity — is it a function of our brain, a social mask or an illusion?” Lvoff says. “After all, don’t we sometimes behave differently than our ‘norm’ — at a party compared to at work, for example? Or we may keep some emotions buried; we may have reclusive days and outgoing days.”
What causes DID?
Back on my phone call with Karen, she explained that when children have been traumatized at a young age, their brain chemistry changes, and they may retreat into their minds and create their own little worlds — “a nice place, because the one they’re living in sucks,” she added.
“It happens because when kids are abused, they can’t handle what’s done to them, so there’s a personality created to take the abuse — and that one will take the pain — and another one will come out to take the horror of whatever else [is] around them, and they try to shield the main personality if there is one,” Karen says.
These other personalities take on separate identities, which sometimes have varying ages, genders, professions or disabilities. Karen says that there is always one who is the “protector” and takes action if they believe the body is in physical danger — but that is the only circumstance under which they would ever harm another person.
“Nobody wants to hurt anybody else,” Karen assures me. “People with DID would rather hurt themselves than anyone else.”
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In fact, she says, self-harm is relatively common among people with DID because sometimes the different identities inside want to destroy the body or even kill it. As Karen puts it, “If they didn’t have the body… they wouldn’t be abused.”
When I asked why they decided to participate in the documentary, Rosalee decided to field this question.
“We wanted to help people understand that what they don’t know is that so many people around them have DID and they’d be surprised as all get-out because you know people who work in very high positions with DID and you also know people who have hidden it very well for years,” she said. “I guess the truth is there are people everywhere in society with DID. Some people can function better than others.”
Rosalee also explained they wanted to do the film because a lot of people don’t understand that living with DID is a mental health condition and not something they chose.
“People think we’re nuts,” she said. “People think we make it up. People think it’s for attention. I don’t think so. The attention you get isn’t attention anybody would want.”
Rosalee told me that one time the body had a brain scan, which they were all able to see on their TV, but instead of seeing “lots of little bodies” inside like they expected, they weren’t able to find themselves in the scan at all.
“We weren’t there,” she recalled. “We were so mad. We were told we are all one body — which we didn’t like very much, but we finally had to accept that because they said so. Sometimes you have to accept what is.”
At this point, Three — another of Karen’s little ones who had remained silent during the first part of the call — interjected, saying they all enjoy “brain stuff,” like looking at the scan.
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“We like brain stuff,” Three told me. “We want to know what brains do. We’re funny that way — we like brain research. It’s interesting.”
‘How different are we, really?’
I agree with Three: Brain stuff definitely is interesting and enlightening — and so was speaking with Karen, Rosalee and Three. And given how little most of us understand about DID, a documentary that takes a realistic yet compassionate look at the condition and the individuals it affects has the potential to inform a lot of people.
“How different are we, really, from those with multiple personalities?” Lvoff questions. “We hope that audiences will begin to understand that DID is a more nuanced and also a more arduous version of the different selves we present.”
For now, though, Rosalee says she is used to the reaction they get when people find out they have DID.
“When you tell people you have DID, they go, ‘Oooohhhh,’ and they don’t know what it means — even if you say you have different parts,” she explained. “And then they look at you like they’re going to all pop out. People don’t know, but it is funny how they wait for it. Do you think we’re all going to show up all at once? We’d need more heads and mouths for that.”
A Kickstarter campaign to fund Busy Inside runs through Friday, March 23.
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