What it’s like to live with one of psychiatry’s most misunderstood diagnoses
That’s the adaptable aspect. The downside, however, is that the mind of a child with DID does not follow the usual developmental path to form a coherent self. “It’s like a puzzle where the pieces have never been fully put together,” explains Richard Loewenstein, a pioneer in dissociative research and treatment and founder of the trauma program at Sheppard Pratt, a psychiatric medical center in Baltimore. While we all have self-states—a work state, a social state, a family state, etc.—”most people who are well integrated can move between their different parts” without feeling unstable, says Frank Putnam, an expert in child abuse and dissociative disorders and a professor of psychiatry at the University of North Carolina School of Medicine.
Most people also experience some degree of dissociation—when they’re driving home from the grocery store and can barely remember how they got there, or when they lose track of time while immersed in a video game. But for people with dissociative disorders, the experiences are more widespread, intense and disturbing. You may regularly feel disconnected from your thoughts, feelings, or physical sensations, a psychological phenomenon known as depersonalization. You may also experience derealization, where the world appears blurry, dreamlike, or unreal.
People with DID have both, along with fragmented self-states that can often cause them distress and make daily functioning difficult: among other things, one self-state may be unaware of the actions of another state. For example, a therapist told me about a client who once spilled coffee on his suit and then found himself in a new suit and didn’t know how it happened. A woman told me that one day she opened the trunk of her car and found three pairs of beautiful shoes in her size without remembering buying them.
Skepticism about DID stems in part from “Sybil,” which was released in 1973 and made into a television movie three years later. Both were sensationalized versions of the story of Shirley Mason, a woman who her psychiatrist claimed had 16 personalities. In addition to psychoanalysis, the therapist used hypnosis and injections of sodium pentothal, which may have evoked false memories of child abuse and personalities. What followed was an explosion of workshops to train therapists for what was then called multiple personality disorder. Some therapists asked clients leading questions and used hypnosis to uncover alleged sexual abuse and personalities, thus promoting fabricated stories and memories. (When used correctly, hypnosis is very effective in bringing people down to earth and relieving anxiety, even in people with dissociative disorders.) As cases of multiple personality disorder exploded, so did criticism.
“When I was treating patients in the 1990s, it was so therapeutically motivated,” says Allen Frances, professor emeritus of psychiatry at Duke University. Frances led the task force that oversaw the revision of the fourth edition of the DSM, which renamed multiple personality disorder to dissociative identity disorder. He counts himself among the psychiatrists who remain suspicious of the diagnosis; most recently because, in his opinion, social media has led to an increase in questionable self-diagnoses. Frances notes that for some people, DID provides a label to explain their distress. Others believe they have it, he adds, because they are prone to fantasies and have difficulty distinguishing reality from their fantasy.
