Dissociative identity disorder is distressing and stigmatized. It’s also a ‘brilliant adaptive coping mechanism’

In recent years, social media has empowered people who live with conditions that have been historically maligned or misunderstood to share information, whether it be facts about their condition or accounts of their lived experience.

I’ve written about this phenomenon as it relates to autism and ADHD and how it’s led to more people self-diagnosing themselves with these conditions. Dissociative identity disorder (DID), formerly known as multiple personality disorder, has also been the subject of thousands of TikToks since 2020, leading more people than perhaps ever before — especially young people — to wonder whether they live with the condition.

One of our readers voiced this curiosity: “What is DID? What causes it? How do I know if I have it?”

It’s really important to note at the outset that DID is severely stigmatized. People with the disorder have been portrayed in movies and TV shows as sociopathic, dangerous and the punchline to many a joke. It is none of those things. As one of our experts, psychologist Adrian Fletcher, puts it: “We’re a community that’s been highly exploited and misunderstood.” What DID actually is, she says, is a “brilliant adaptive coping mechanism.”

In this newsletter, we’ll dispel the most pervasive misconceptions about DID the disorder, how and why it occurs and what kind of support can be effective for people with it.

What is dissociative identity disorder (DID)?

The disorder has come into public awareness only in the last few decades. But one case of what would arguably be described as DID today was documented as early as the 1500s; Jeanne Fery, a 25-year-old Dominican nun, endured severe trauma and had several different identities, each with their own names and distinct characteristics. At the time, it was thought that Fery was possessed, but her experience has been re-interpreted by modern researchers as DID. Other accounts appeared in medical literature in the 1600s through the writings of Benjamin Rush, one of the founders of American psychiatry.

Multiple personality disorder didn’t become a formal diagnosis in the United States until 1980, when it first appeared in the Diagnostic and Statistical Manual of Mental Disorders (DSM), the American Psychiatric Assn.’s manual of mental health conditions. It was renamed dissociative identity disorder in 1994.

A person with DID has more than one personality state, with the different states often called “alters” or parts. The alters all reside in the same body, which may be referred to as a “system.” Alters may have different names, ages, genders, sexual orientations and personal preferences.

“Each alter serves a very special role in helping a person function,” said Fletcher, who has a DID system of 22-plus parts. “Some of them hold memories and traumas, while other help with daily functioning or keeping a person alive.”

Dissociation is a type of freeze or shutdown response that’s part of the human condition. It can range from daydreaming or a mild emotional detachment to full-on memory blackouts. For people who’ve experienced trauma, dissociation helps us escape the distressing event as it happens and also shields us from the memories, pain and fear associated with the trauma. It’s one of the psyche’s most powerful survival tools.

On the far-end of the dissociation spectrum, DID is thought to be caused by severe and prolonged trauma in childhood, including sexual or physical abuse or trafficking. Dissociative episodes, or shifts from one part to another, can be triggered by stress; certain memories; strong emotions; sounds, sights and smells that remind a person of their trauma; or substance use, experts said. It’s different from person to person.

People with the disorder often have blank spaces in their memories, have trouble remembering personal information about themselves or have vague, dreamlike memories of experiences.

Everyone has different parts of themselves, said Jamie Pollack, founder of the advocacy and education nonprofit An Infinite Mind. “The professional self isn’t the same person who goes to club or goes on dates,” she said. “People with DID have those same roles, but they’re not aware of each other. If I was to meet someone at the gym and saw them the next day in a different place, I might not know who they are. “

“There’s a lot of memory loss,” said Fletcher, who is a survivor of trafficking and ritual abuse. In the past, Fletcher’s 17-year-old part would sometimes spend money recklessly, but she wouldn’t know about the purchases until credit card statements arrived in the mail. People would approach Fletcher, address her by name, and she would have no idea who they were.

Fletcher wasn’t diagnosed until she was an adult, but she had strange and unusual memories that she would push down and dismiss. She found writings and drawings she’d created over the span of her life that she couldn’t understand or remember making. “I didn’t realize that I had different parts that were trying to communicate with me,” she said.

Pollack was diagnosed with DID in 2003 at age 27. From a very young age, she had names for her different alters. “I knew that there was more than one of me. I always referred to myself as ‘we,’” she said. “I thought that everyone lived this way.”

From her adolescence onward, Pollack was in and out of therapy, trying to find help for her anxiety, depression, nightmares, memory lapses and feelings of disconnection. She told her therapist that she heard voices talking to her, and the therapist concluded she had schizophrenia — a common misdiagnosis for people with DID.

Unlike typical parts that everyone has, people with DID often have “amnesic barriers between parts,” Fletcher said, meaning that one alter may not remember what other alters have done or experienced (including traumatic events). Understandably, this can be very distressing.

“There were gaps in my daily narrative,” Pollack said. “I spent a lot of time confused.”

What many get wrong about DID

Now that we’ve looked at what DID is, I want to talk about what it’s not.

Film and TV are rife with harmful depictions of DID. One notable example is the 2016 thriller “Split,” a movie following a violent predator with 24 personalities. In the movie, a person living with DID imprisons, kills and eats three women.

“Movies like ‘Split’ and their dramatized versions of mental illness breed misinformation and shape an unhealthy discourse,” Shirley J. Davis, an author with the condition, wrote for the National Alliance on Mental Illness. “People have asked me if it’s ‘fun’ having DID, and some have even wondered aloud if they could develop the condition as an adult for their own entertainment. Such questions are not only inappropriate but also deeply distressing or triggering.”

Common presentations of the condition “also inspire a fear of DID and the people who live with it,” Davis wrote.

“People with DID are no more dangerous than any other person,” Pollack said. In fact, people with the condition, with their extraordinary capacity for self-protection, tend to be good at protecting others too and often go into fields like therapy or education, she said.

Another misconception is that when people switch alters, there’s a dramatic shift in identities — and that’s not the case for most people with DID, experts told me.

When Fletcher switches parts, she’s sometimes aware of what’s happening; other times, she isn’t. It depends on how much stress she’s under in that moment, she said. They might sweat a lot or get really intense headaches. But an outside observer is unlikely to see the change. “The media has made it look like switching is dramatic and overt,” Fletcher said, “but for many of us, it’s very subtle.”

For decades, the very existence of the disorder has also been debated, and some have attributed DID symptoms to social contagion, hypnotic suggestion and misdiagnosis. However, research shows that people with the condition are consistently identified in outpatient, inpatient and community health samples around the world. (I also think that, baseline, if millions of people are saying that this is their experience, we should believe them. DID is diagnosed in 1.5% of the global population.)

These misconceptions have kept people with DID hidden and silent, Fletcher said. “And for some people who do come forward, they lose their family, friends and careers. Most people with DID are working really hard to present as someone who doesn’t have multiple parts, and it’s exhausting. They live in a lot of fear.”

How is dissociative identity disorder (DID) treated?

The most common form of treatment is talk therapy, experts said, particularly cognitive behavioral therapy (CBT) and dialectical behavioral therapy (DBT). Antidepressants and anxiety medications are also helpful for some.

Rebecca Lester, a psychotherapist and anthropologist from Washington University in Saint Louis who has experience working with DID, noted that the dominant approach for treatment has the goal of “collapsing all of those identities into one, core self.”

“I don’t agree with that as a necessary goal,” she said. “For some people, that might be the right way to go, if that’s what they want. But some people do not. There’s a variety of ways we can work with people who have dissociation of various forms to help them manage it better, to be able to function better in the world.”

Lester had one client who was dead-set against collapsing her parts; instead, they worked on enabling her alters to communicate so that the client didn’t feel so fragmented. “Therapy helped her build a sense of community among her parts, who can work together for shared goals, which can be a really adaptive for people to live in multiplicity,” she said.

Pollack has become skilled in this kind of internal communication. Her parts have a morning meeting and a night meeting, where everyone checks in about what they’ve been up to and what their needs are. Before she began doing this, her parts would write notes to one another in a communal planner. “I don’t lose time anymore because I’m aware of my parts, and they’re cohesive now,” she said. “I hear when they make plans, because I’m able to stay present when that happens. Even if there’s a moment I’m not, I’ve come up with tips and tricks to make it through the day.”

Both Pollack and Fletcher say that bottom-up therapies, or healing modalities that focus on the body such as somatic experiencing and EMDR, can be particularly helpful for people with DID. As I’ve written before, this is true for many conditions that are caused by trauma.

“Talk therapy can be too ‘in your head’ for people with DID, because it’s such an emotionally-based disorder. Dissociation is a disconnect between your thoughts and feelings,” Pollack said. “Therapies like EMDR and art therapy help you get past the thinking brain and heal emotional states.”

Fletcher stressed that there’s no on-size-fits-all treatment for DID (which is true for basically everything in mental health). “What it comes down to is support, understanding and unconditional positive regard — whether they find it in traditional psychotherapy, art or equine therapy, yoga, breath-work or dance and movement. Some younger parts might not engage in talk therapy but may engage in art therapy.”

Regardless of the approach, Fletcher said, it’s important to address the underlying trauma in a way that’s chosen by the person living with DID.

If you’re wondering whether you have dissociative identity disorder (DID)

There’s a wealth of information out there about DID: Some of it great, some of it not so great. If you’re wondering whether you’re living with the condition, Pollack recommends thinking about which aspects you connect with in the stories you’ve heard from people with DID. What feels familiar to you?

Pollack recommends seeking out a therapist who is well-trained in dissociative disorders and complex trauma. When you consult with a prospective therapist, ask them about their specialized training and experience working with DID.

Self-diagnosis is valid, Pollack said. “But don’t rush to thinking you have DID because a video is relatable and you have some similar thoughts and patterns. Dissociation is a spectrum, and some aspects of dissociation are common in most people.”

Until next week,

Laura

If what you learned today from these experts spoke to you or you’d like to tell us about your own experiences, please email us and let us know if it is OK to share your thoughts with the larger Group Therapy community. The email [email protected] gets right to our team.

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More perspectives on today’s topic & other resources

Here are some resources on dissociation and DID that psychologist Adrian Fletcher recommends:

Instagram:

@healingmyparts
@dissociation.info
@carolynspringwriter
@gianusystem

Podcasts:

“Braving the Way with Dr. Fletch”

Books:

“Dissociation Made Simple: A Stigma-Free Guide to Embracing Your Dissociative Mind and Navigating Daily Life” by Jamie Marich

“Breaking the Ruhls” by Larry Ruhl

“The Sum of My Parts” by Olga Trujillo

“One Soul Multiple Expressions: Poems by the Parts” by Adrian Fletcher

“Crazy: Reclaiming Life from the Shadow of Traumatic Memory” by Lyn Barett

Television:

“The Many Sides of Jane” on Amazon Prime

Other interesting stuff

For decades, the L.A County Department of Mental Health didn’t need marketing campaigns or too many perks to get people to apply for jobs. But in recent years, the largest county mental health department in America has seen a decline in applicants (and as of September had a vacancy rate of 28%). My colleague and friend, Jaclyn Cosgrove, writes about the agency’s efforts to attract workers — including an $18,500 stipend to help pay for graduate school and student loan forgiveness.