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Elyse tells pretty much everyone she meets about her DID and her system of alters. Her introductory spiel goes something like this: "I have a disorder called dissociative identity disorder, which used to be known as multiple personality disorder. It's a real thing." She then talks about some of the main alters that you might meet and says, "If you don't know who is out just ask. And if you have any questions, just ask. And if you're disrespectful, there's the door."
Last summer, after she had told many people close to her about her DID, Elyse decided to officially disclose it to all of her friends and family through a Facebook post. She wrote: "So many of you may not know this about me, but I'm 'coming out': I have Dissociative Identity Disorder! ... I've had this mental condition — more a way to cope with what otherwise could have killed me — as long as I can remember." She asked that people "keep an open mind and not judge before knowing."
Some were supportive. But others were not. Some relatives stopped talking to her or privately expressed doubt or concern to other family members, Renee and Elyse told me. Elyse had made very clear that people should call her Elyse — and not her birth name — but some refused. "There are a couple family members that just want to sweep it under the carpet," said Renee.
One family member suggested that because Elyse had taken acting classes in high school, she was fabricating her DID as well as her memories of trauma. "It's extremely painful for a family member to say something like that," Renee said.
The problem wasn't just unsupportive family members. After Elyse began talking openly about DID on Tumblr, she started to face frequent online bullying, often in the form of messages from anonymous users telling her that DID is fake, that her alters are glorified imaginary friends, or that she must be a serial killer.
After she got her diagnosis, Elyse and her mother also had trouble finding therapists with specific expertise on DID. Some clinicians turned Elyse away because they said they didn't know anything about DID. Renee also recounted having difficulty finding someone at a local rape crisis center to help Elyse; the center said it was trying to connect her to someone with knowledge of DID, but eventually told Renee that there was no DID expert that accepted Elyse's insurance (Medi-Cal).
One of the worst situations involved a therapist who called Elyse back, shortly after she had received her diagnosis, and told her that the disorder is not real. "I can't believe a therapist would say something so damaging," Renee said.
The therapist, Elyse recalled, essentially said: "DID is just made up by the media for insecure people who want attention, and I think you have some seriously deeply ingrained issues if you think that you have all these people in your head."
According to Brand, the Towson University expert, graduate schools do a poor job of teaching future mental health clinicians about dissociative disorders and the role that trauma plays in psychological conditions. As a result, there are not enough therapists who have the expertise to treat DID. Brand said that in her own practice, there is such a high demand from people with DID seeking psychological services that she has to turn away multiple people every week because her schedule is full.
And because the research on DID is limited, counterproductive debates about fundamental aspects of DID continue today, she said.
These debates have escalated recently over two competing philosophies — the "trauma" and "fantasy" models — concerning dissociative disorders. Arguing in favor of the trauma model, Brand and Spiegel, from Stanford, along with a number of other experts in the field, wrote an article published in Psychological Bulletin in 2012, stating that an abundance of research demonstrates a strong correlation between dissociation and sexual and physical abuse. Many of these studies, the authors noted, have relied on objective, verifiable measures of trauma — meaning confirmations from therapists, reports from child protection agencies, and more.
The second model, which some call the "fantasy model," suggests that "fantasy overlaps with dissociation" and that people with DID are often prone to fantasies and irrational thoughts and may be vulnerable to suggestive influences from therapists. In other words, this model postulates that therapists may be misleading vulnerable patients into falsely believing that they have other personalities inside of them — and falsely believing that they were abused earlier in their lives. They are prone to "inaccurate or exaggerated self-reports of trauma," proponents of the fantasy model wrote in a 2014 Psychological Bulletin paper.
"There's a certain denial about child abuse," said Spiegel, adding that the argument that people make up their trauma stories are unfounded. In truth, he said, research has demonstrated that trauma victims frequently suppress painful memories of their abuse (which is why they may emerge later in therapy). He pointed to a 1994 study of 129 women who had been sexually abused when they were children, according to hospital medical records. The study found that 38 percent of these women did not recall the abuse. In addition, women who were victimized at a very young age and those who were molested by someone they knew were more likely to have no recollection of the trauma.