The condition was formerly known as “multiple personality disorder,” and the medical field is still in disagreement on whether it is real. But does ‘real’ matter when a diagnosis can help?
by Shayla Love, I heard it on the Vice podcast and went to find the original article. Very insightful.
he lights dimmed at a movie theater about 100 miles northeast of London, in a city of more than 100,000 people. I had traveled nearly 3,500 miles from New York to watch The Three Faces of Eve, a black-and-white movie from 1957. The film, about a woman with multiple personality disorder, is based on a real case study and subsequent book authored by her psychiatrists. In the seat next to me was Lizzie Green*, a woman diagnosed with the same condition, though it’s now called dissociative identity disorder, or DID.
Movies aren’t kind to DID. Fight Club, Sybil, Primal Fear, Hide and Seek, Black Swan, Secret Window, Dr. Jekyll and Mr. Hyde—in films like these, when someone has a hidden personality, it’s usually a violent one that commits unspeakable acts, while the character has no memory of their actions.
“They’re all horror films, aren’t they?” Green, a thin woman in her mid 60s, said to me. “They use a mental disorder to make a very good horror movie.” She paused, and smiled begrudgingly. “I watched Split, and I think it’s a very good film. But I don’t like them doing it.”
Dissociation—a feeling of being disconnected from your thoughts and feelings, often described as seeing yourself from an outside perspective—isn’t rare. According to the US national nonprofit Mental Health America, about a third of all people say they’ve once felt they were watching themselves from afar, as if in a movie.
But when dissociation becomes more extreme, it crosses into surreal territory, becoming Hollywood fodder. Severe dissociation can include psychogenic amnesia, when a person can’t remember personal information with no seeming physical cause, or dissociative fugue state, when a person loses his or her identity altogether—as if they’ve just stepped out of their body and walked away. With DID, it’s more like a person’s body is a boardinghouse filled with many guests, and you’re not quite sure who will come to the door when you knock.
DID affects an estimated .01 to 1 percent of the general population, but it’s a condition that many researchers still disagree on. Its history is fraught with tales of false memories and Satanic cults; only three paragraphs into WebMD’s page on DID, a subheading asks: “Is Dissociative Identity Disorder Real?” To this day, only some believe it is, while others believe it’s a disorder brought on by the power of suggestion and scary stories. Clinicians don’t doubt the suffering of people who get a DID diagnosis, but they can’t agree on where the suffering originates, and that conflict has had major implications for how people with DID are treated.
How does one prove that a mental disorder is “real”? Scientists can look to the brain, case studies, symptoms, and treatments, all to find evidence of a distinct disease. But the disagreements around DID highlight the subjective nature of our categorizations of illness, especially mental ones. Historical context and culture have clearly influenced our understanding of illnesses and their prevalence. In the case of DID, the legacy of multiple personality disorder continues to seep into the work of those treating the disorder as well as those who have it.
In my discussions with people who study DID and treat patients who have it, some said that the diagnosis wasn’t a real thing—that it was just another way to talk about the symptoms of other disorders, like PTSD or bipolar disorder (an illness characterized by mood swings and confusing behavior). Yet others vehemently insisted that DID was a disorder unto itself, perverted by what we’ve seen in the movies but very real, caused by the worst kinds of childhood trauma—such as what Green eventually uncovered in her own mind.
Throughout the movie, I peeked at Green’s face, trying to gauge if she was upset at the way DID was being portrayed onscreen. Joanne Woodward played Eve White, an exceedingly timid woman who gets headaches and seeks out a psychiatrist after she starts blacking out and losing track of time.
While Eve is talking to her doctor, an alternate personality, who goes by Eve Black, emerges. Black is the opposite of White in every way: She’s reckless, outgoing, and cares little about family or the rules of society. The two personalities wrestle for control over Eve’s body. Toward the end of the movie, Jane, a third, mild-mannered “alter,” enters the mix. Eve’s therapist uses hypnosis to reveal a trauma in Eve’s past: She was forced to kiss her grandmother’s dead body during an open-casket funeral. After reckoning with this experience, Eve White and Black disappear. Jane, now a single “integrated” person, cinematically lives happily ever after.
I thought the movie was a bit overwrought. But Green surprised me by saying that the moments when Eve switched from White to Black weren’t far off from her own experience with DID. Green too discovered a previously unknown traumatic past when she was 39, and said there were many different alters coexisting in her head.
A few hours earlier, I had climbed into the front seat of Green’s midsize SUV, and we drove a short distance to her home, making polite conversation about my train ride and how I was enjoying my stay in London. A spray of plants framed her one-story house, and bees were audibly buzzing from one blooming flower to the next. Inside, the decor was clean and bright, and the sun poured in through the windows.
Green led me to a sitting room, where she sat curled up, catlike, in a chair across from me. Her husband brought out lunch on a tray: cheese melted on bread for her, hummus on bread for me (she had been thoughtful enough ask about my dietary restrictions in advance). It was a strangely cheery environment in which to begin talking about dark subjects, but in a way, it mirrored the unsettling contrasts of her childhood. She was born in the early 1950s in England on a farm that was incredibly isolated, she said, five fields off from any sort of road. “If the abuse hadn’t been going on, it would have been a blissful situation,” she told me. “Absolutely blissful.”
Green said she was sexually abused starting at a young age, until she was 16. She thinks it was by her father, as well as others. She doesn’t have any direct memories of the abuse; instead, her alters, which she called her “parts,” do. They all inhabit the same body, so they are her memories. But before, they were compartmentalized, she said, locked behind closed doors in her head.
“I would not have use of my brain, and there were parts that did,” she said. “We always finished with the part that would get us back into bed, and there was a part who came and lay on her tummy, and her job was to empty the brain of everything that happened, so that when I woke up in the morning, I would have absolutely no memory. No single part could have held the whole abuse situation, because we wouldn’t have been able to. The whole thing had to be this fragmented for us to be able to stay sane.”
As she talked, Green switched pronouns, going between “I” and “we” to refer to herself. (If she had her way, she said, she’d always use “we”—it feels more accurate. But she uses “I” to make others comfortable.)
Green told me she didn’t realize she had no complete memories of her childhood until she was 39, when the emotional trauma of a death in her family started to break down the dissociative walls she had put up. She started to get tiny snippets of memories back but didn’t know what to think of them. She thought perhaps she was going crazy.
She would find herself walking like she did when she was a toddler, with her feet turned inward. Or she’d find herself wanting to eat only baby food. Other times, she could only sleep on the floor in the corner of her room. Until that point, Green had been a busy, productive adult. She had four children. She’d consistently held a job.
One day at the library she picked up the book The Flock by Joan Frances Casey and read it cover to cover. It was about a woman who had DID, and the symptoms sounded just like the puzzling experiences she had been having. “I just couldn’t put it down,” she told me.
The book suggested writing to your inner child, and so Green began to write letters to herself. Ten to 12 parts wrote back, each with different handwriting styles. “Memories were coming up, and the more and more dysfunctional we became,” she said. “It was awful, absolutely awful, because it was just chaos.”
After some internet research, she went to a psychiatric conference where she said she first heard the description of structural dissociation: when a person is divided into parts that do the everyday living, separate from parts who were abused.
“I was living in this mad world,” she said. “Parts were writing down these terrible things that apparently happened to us. It was hell, and my head the whole time was like World War III. When I heard this description of structural dissociation and understood these other parts were children stopped back in time, like trauma has literally just happened to them, it began to make sense.”
n 1973, the book Sybil was published, which told the story of a woman’s tormented childhood, repressed memories, and multiple personalities. The book sold millions of copies, and when it was turned into a popular television movie in 1976, 40 million Americans watched. Movies like The Three Faces of Eve and Sybil brought multiple personality disorder to the masses. Whereas tales like Dr. Jekyll and Mr. Hyde were fiction, these films claimed to be based on “true stories.” The idea that memories of trauma could be hidden and excavated through repressed memory therapy or regression hypnosis swept through the country, opening the possibility that anyone could have a history of terrible abuse and just not remember it. Before the 1970s, there were very few known cases of multiple personality disorder; by 1990 there were at least 20,000 confirmed diagnoses, “with estimates of as many as two million more,” according to a 1998 New York Times article.
But doubts from psychiatrists, and then patients themselves, quickly crept in. If traumatic memories could be so easily shut away, how could you explain the symptoms of people with PTSD, who couldn’t turn off the deluge of traumatic memories? Was it really possible that so many people had suffered through horrific events as children, and were just now, collectively, remembering them? Researchers simultaneously began to study false memories—the idea that with suggestion, a person could sincerely believe something had happened to them in their past.
Elizabeth Loftus, a cognitive psychologist now at the University of California, Irvine, was a leading figure in this work, and published many studies on how a suggestion could lodge itself in someone’s mind and become a memory. The False Memory Syndrome Foundation was formed in 1992 as a space for Loftus and others to probe the fallible nature of memory, and her book The Myth of Repressed Memory was published in 1994. One of her studies from 1995 showed that 29 percent of people to whom she provided a false childhood memory would later say that they “remembered” it and provide additional details.
Examples of “implanted” memories and personalities started to make the news. “The courts don’t know what to do with it,” said George B. Greaves, a clinical and forensic psychologist, about multiple personality disorder in the New York Times in 1994. “The field right now is just in chaos.”
In 1997, a woman named Sheri Storm filed a malpractice suit against her therapist Kenneth Olson, claiming that her diagnosis of multiple personality disorder, and her more than 200 alternate personalities, were induced by his suggestion. She had initially sought therapy for insomnia and anxiety.
“She had ‘remembered’ being sexually abused by her father at the age of three and forced to engage in bestiality and satanic ritual abuse that included the slaughtering and consumption of human babies,” wrote the Emory University psychologist Scott Lilienfeld in an article about Storm’s case in 2007. “According to her psychiatrist, these traumatic experiences had generated alternative personalities, or alters, within Storm’s mind.”
In transcripts of Storm’s therapy sessions, Lilienfeld wrote, Olson dominates the conversation. Storm doesn’t provide any information of other personalities, but Olson identifies them and talks with them.
In 1997, another one of Olson’s patients, Nadean Cool, received a $2.4 million settlement after she sued him for malpractice. She said that using hypnosis and suggestion, he led her to believe she had been abused in a Satanic cult and was witness to all kinds of violent activities. He had diagnosed her with multiple personalities, which included “a duck, Satan, and angels who talked to God,” the LA Times reported.
At a 1998 American Psychological Association meeting, the psychologist Robert Rieber said that he had reviewed the 25-year-old tapes of therapy sessions with Shirley Mason—the real Sybil—and that he thought her many personalities were also “implanted by her own psychiatrist, eager to break ground in the research of multiple personality disorder,” the Times reported. Rieber’s announcement called into question one of the most famous examples of “real” multiple personalities.
Four years prior, in 1994, the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) had already discontinued including the diagnosis of multiple personality disorder and replaced it with DID. The American Psychiatric Association (APA), which writes the DSM, continues to distance DID from multiple personality disorder.
On its website, in a Q&A, the APA says that people with DID have a lack of connection to their memories, emotions, and senses, and to regard those people as having multiple personalities isn’t quite right. In its rebranded form, DID was not caused by false memories or an influx of new personalities, but a disruption of a personality that was already there, a kind of fracturing of the self. They “do not have more than one personality,” the APA wrote, “but rather less than one personality.”
uch of the current skepticism around DID comes from the scandals of multiple personality disorder and its messy genesis in the DSM. The contemporary debate boils down to two sides that argue for differing explanations of DID: One is called the “trauma model,” and the other the “sociocognitive model,” also referred to as the “fantasy model.”
The trauma model describes a relationship between a history of trauma and dissociation, and explains the fragmenting of the self as a response to this trauma. The sociocognitive model argues that DID is influenced by other factors, such as therapists, the media, preexisting ideas about multiple personality disorder, and misinterpretation of other mental and physical health considerations. In essence, the sociocognitive model is an updated version of the idea that DID is brought on through suggestion, while the trauma model posits that an experience of trauma is mostly what leads to DID.
Studies that try to determine if DID is explained by the trauma model or the sociocognitive model can have mixed results. Some have found that there is a consistent relationship between trauma and dissociation, and that dissociation isn’t associated with suggestibility, or being prone to believe what others say.
Simone Reinders, a neuroscientist at King’s College London, has been looking for, and finding, differences in the brains of people diagnosed with DID. She’s seen variation in the brain’s blood flow for different areas and changes in brain physiology compared with controls. She has also seen differing brain activity when people with DID were in one identity state or another.
But Lilienfeld, who wrote about Storm’s case after meeting her, told me that the majority of people with DID sincerely believe they have multiple, indwelling personalities, and in these studies, they are compared with people who are trying to simulate DID, but don’t really believe it to be true. This, according to him, would reflect in their brain scans, and account for the differences. What the brain imaging revealed, he told me, isn’t DID, it’s their belief in DID. “My take on DID is that it is a disorder of belief,” he said. Lilienfeld said that when psychologists have tried to see if people with DID have memories that only one alter has access to—which would prove they were truly distinct from each other—they haven’t been successful.
“The fact that people believe they possess different ‘personalities’ is not the same as their actually possessing different personalities that are separated by amnesic barriers so that one personality is unaware of what another personality has learned or experienced,” Steven Jay Lynn, the director of clinical training at the Psychological Clinic at Binghamton University, and another sociocognitive-model proponent, told me.
Lynn doesn’t think DID is necessarily the fault of a therapist, and he said people with DID don’t need to be highly suggestible. He’s begun to suspect that other long-ignored physical factors, like sleep issues, may play a role: Consistently bad sleep may produce dreamlike experiences and feelings of unreality. And other psychiatric conditions may be interpreted as DID. He told me we shouldn’t ignore the influence of genetics, which might make a person more prone to feelings of dissociation.
“What I am saying is that many influences can interact and conspire to form a compelling narrative of multiple selves,” he went on. “In short, neither trauma alone, nor media alone, nor suggestibility alone, can fully explain many cases of dissociative identity disorder. What is clear is that we need to better understand the role of multiple determinants in the case of this disorder, as is typically the case with any complex psychological disorder.” As can happen in academic disagreements, I found passionate responses published by Lilienfeld to Reinders’s work, and then responses from Reinders to Lilienfeld’s responses. The bickering and callouts can be found both in papers that favor the trauma model and in ones that argue for the sociocognitive model.
For a disorder in which patients have trouble figuring out the truth about their experience of a dissociated self, the research can feel equally fragmented in its conclusions about what people are feeling and why. People may have already had one diagnosis— multiple personality disorder—taken from them and thrown in the scrap pile, and yet the battles rage on in the fight to define DID. “I don’t understand what the controversy is about DID,” Reinders told me over the phone. “It has been included in the DSM for decades now. There is a huge amount of research available [on it], empirical research, and case studies. My data, among other people’s data, has shown that neuroanatomical changes in DID are similar to those in PTSD.”
Reinders had another theory about the resistance: She thinks that DID, and the kinds of trauma that she thinks cause it, reveal an underbelly of our world that few want to acknowledge, like childhood sexual abuse.
“For me, that might be an explanation for why critics don’t want to believe that DID exists, because it shows them the darkness of our society,” she said.
I asked Green what she would say to people who believe DID comes about by suggestion of a therapist. Was she understanding her childhood trauma this way because a therapist was providing her the idea? “I would talk about something, but never, ever, ever did he suggest this might have happened,” she told me. “It had to come from me.”
The day after I met with Green, I sat with Ruby King* in a hotel cafe in the Bloomsbury neighborhood of London. She was soft-spoken and seemed a little nervous. After a splash of milk and a thoughtful stir of her tea, she said her first psychiatrist told her she had severe depression and anxiety, but possibly also symptoms of a complex dissociative disorder. King is a doctor, but she had to go home and look up what a dissociative disorder was. That was 15 years ago.
King is in her late 50s and, like Green, grew up in a small village in England. She said her father was abusive to her, her mother, and her brothers, though until she was an adult, she didn’t remember any of the abuse against herself. “I genuinely would have told you that I’d got off lightly and that most of the harm was done to my mother and my brothers, and I’d somehow escaped,” she told me.
She considered herself her mother’s protector. She tried to stop arguments from progressing to physical violence, and it consumed her childhood. “I watched from the stairs a lot to see how bad the situation was,” she said. “Once, he had his hands around her throat and was throttling her, so I ran down screaming and broke the whole thing up. When you had that kind of responsibility, you sleep like crap, with your eyes still watching, still listening, still on alert, even when you’re asleep.”
King didn’t notice symptoms until her 40s, when her mother died; before that, she had gone to medical school, gotten married, and become a doctor. She tried going to therapy, but still felt unsettled and depressed, trying to hold it together.
“Just press on and keep going and try to be a good wife, a good doctor, a good mother,” she explained of her attitude. “Keep all the plates in the air. But it was getting harder and harder. I was more and more weary, lacking in energy, struggling to concentrate.” About seven years after her mother died, her father died. A couple of weeks later, King said the “wheels came off completely.” “I had what you’d call a breakdown,” she told me. “I was in a heap on the floor. Could barely speak. Didn’t know how to put a load of washing on. Couldn’t voluntarily drink or eat unless somebody’d put it in front of me.”
She was taken to the hospital and she began to have flashbacks that popped up in rapid succession. “I picture it like I was holding all these balloons underwater, and they just started coming up,” she said.
In the hospital, she was living in flashbacks most of the time. This meant reliving previously unknown memories of sexual abuse, physical abuse, and the accompanying terror, pain, and other emotions. Sometimes she didn’t know her name, sometimes she referred to herself with her maiden name. She felt younger and shorter, as if she were the same age and height she was when an incident took place.
“I honestly thought I was going mad,” she said. “Completely and utterly mad.”
Richard Loewenstein saw his first DID patient when he was a research associate at the National Institute of Mental Health (NIMH) in the early 1980s. He had been referred to a patient in the refractory affective disorders unit, where patients with mood disorders who didn’t respond to any medications were sent for experimental treatments.
The patient had been in a lithium study that hadn’t helped her much, and Loewenstein was conducting an exit interview with her. One of the nurses told him the patient had said she had multiple personalities, and Loewenstein responded, “She doesn’t have that. She’s bipolar. When she shifts high, she must feel like one person. When she shifts low, she must feel like another.”
But as their interview was coming to an end, just to rule it out, he said, “If there’s anybody else in that body who wants to talk to me, I’d be happy to talk to them.”
“And she began to shift states,” he told me. “It was completely different from TV, and it was completely different from what was in the old textbooks. Rather than seeing somebody who was kind of like a revolving door, actually what I saw were states that overlapped each other and one state would emerge through another state.”
Loewenstein is now the medical director and founder of the trauma disorders program at Sheppard Pratt Health System in Baltimore and a professor of psychiatry at the University of Maryland School of Medicine. He told me that movies and repressed-memory lawsuits associated with multiple personality disorder have damaged the public and clinicians’ understanding of DID. “They’re not separate people,” he told me. “All the stuff that people get excited about, the names and the accents, and one’s a seven foot, winged monkey that only speaks Vietnamese—those are all completely secondary [symptoms]. It is a disorder of being betrayed by the people who you would hope would have cared for you in a loving way in your childhood.”
At his center, there are around 300 admissions a year, and about 80 percent have DID, he said. “Far from being an anomaly and far from being rare, it’s actually a common and severe psychiatric disorder, but it is not recognized.” He told me most clinicians just don’t know what to look for.
Only a minority of patients come to see him with elaborate stories of different personalities, and for Loewenstein, it’s not a very good prognostic sign. True DID, he said, is hidden. It’s subtle. It’s not dramatic. A lot of people don’t show symptoms until adulthood, which show up as upsetting thoughts, lapses in memory, anxiety, depression, and feelings of dissociation.
Loewenstein believes that DID should be understood as a childhood-onset post-traumatic developmental disorder. It happens when children have early, extreme traumatic experiences and don’t develop a sense of self that is unified across different situations, emotions, or contexts. And while many of his patients also have PTSD, depression, substance abuse problems, or suicidal ideation at the same time, he said that DID is a condition on its own.
He agreed that society could influence the interpretation of DID— but culture and historical context always make their way into the expression of mental disorders. Schizophrenics living today may have delusions about surveillance on the internet, whereas in the 19th century that delusion may have focused on the telegraph. The AIDS crisis fueled delusions and obsessions in the 1990s, whereas before it might have been tuberculosis that was doing the same. Loewenstein told me that he’s done longitudinal studies in which he’s looked at patients over time being treated elsewhere compared with people receiving his treatment model. He says that people get better his way, albeit slowly. “Their PTSD symptoms get better,” he said. “They get less dissociative. They get less separated between their different states. They’re less self-destructive.”
“Rather than trying to suppress the states, we try to get them to communicate more, to be more related to each other, to be more empathic with each other, to be more coordinated and cooperating,” he explained.
King said her therapy was a bit like family therapy, but the family was all the parts inside her, and it was similar to the technique Loewenstein describes. She now knows that her parts are her, just at different ages. Each part became separated to deal with a specific memory or experience. She said that what she’s gone through does feel like a form of PTSD, but that it’s more complicated because it took place during her developmental ages.
When Green eventually found a therapist who specialized in DID, she would give each part a little bit of time in the driver’s seat of her consciousness, which also meant doing things that a young version of herself would want to do, like watching Teletubbies or coloring. On trips, she used to have to pack three big bags, filled with dolls, teddy bears, coloring books, and different clothes for each part. To me, talking to Green felt like talking to one person; no other parts came out. She said that once she had given each part its own time, their needs weren’t as dominant. Now when she goes away, she can just bring adult clothes (though occasionally she’ll still bring one stuffed animal).
I asked Green if she thought she was the leading character of the cast that’s in her head. She used to, she told me, because she was the one who held monopoly on her body for most years. But now, she thinks she’s just one part of many.
“In some ways, I am the most superficial part, because I have the least connection to the original child, who holds all the ingredients of being a real person,” she said. “I do see me as a part, just a part.”
Denial and doubt in itself can cause just as much harm as the symptoms of an illness. When you’re suffering and you don’t feel like what you’re going through is valid, understood, or exists at all, it can take a powerful psychological toll.
Loewenstein said that he leaves deciding what’s real to the philosophers; his job is to make people feel better. “The mind has its own reality and, by the way, medical disorders are social constructions also,” he told me. “All of our disorders, psychiatric and medical, are at some level social constructions.”
That a diagnosis can come and go from the DSM shows that our understanding of mental illnesses is always changing and evolving. The DSM has been referred to as the “bible” for the field of psychology; it’s a book rooted in faith and human constructs, rather than objective facts. In 2013, the former director of NIMH, Thomas Insel, wrote that the DSM was “at best, a dictionary, creating a set of labels and defining each.” It gave patients and clinicians a set of words to use, and made sure people were using the same words, but it didn’t mean those words were valid. Unlike cancer, heart disease, or diabetes, mental disorders exist via a patient’s description; we don’t yet have blood or brain tests that can give definitive results for anxiety, depression, bipolar, or really any psychological condition.
Insel announced that the NIMH would be leaving the DSM behind and launching the Research Domain Criteria (RDoC)— an attempt to classify mental illness through more objective means like genetics or brain imaging. “It is critical to realize that we cannot succeed if we use DSM categories as the ‘gold standard,’” Insel wrote. And yet, until the RDoC matures and becomes a tool we can use—it’s currently still being researched— the DSM is the best we have when it comes to defining and diagnosing mental health.
However imperfect, it’s important to know when our categories are helping or hurting. Sometimes when you accept a diagnosis, your world shrinks in on itself. Everything becomes pathologized and restricted; people can get caught up in what will make them sicker. They only interact with others who are suffering in similar ways. Their world gets smaller. But that’s not what I saw in Green. At the end of The Three Faces of Eve, Green made her way to the front of the theater. She had agreed ahead of time to answer questions from the audience about DID. I observed her speaking from my seat in the back row. She looked confident and her voice didn’t waver.
During the Q&A, she said that getting her diagnosis, and finding a voice in advocacy for DID, had expanded her life. It’s full of family, travel, grandchildren, events, and collaboration. A DID diagnosis had improved things for her, whether or not she can prove she has it, or that her memories really took place. King told me the same: “My psychiatrist always made it quite clear, and I agreed with him, that nothing that I’d come up with could ever be presented in court… But if [a] person either believes those things happened or they actually did happen, then they clearly need help of some kind, don’t they? So I think that’s the part to start from, and not go into the forensic side.”
Loewenstein and Reinders may say that DID stems from trauma, while Lynn and Lilienfeld think there is a more complex origin story, but they all feel that the way multiple personalities is depicted in movies isn’t true to what’s it’s really like. They believe that, as with all health issues, its causes are probably multifactorial, and often comorbid with other disorders. Most important, and this goes for all mental disorders, they believe in the subjective experience of the sufferer, no matter what the diagnosis is.
“Diagnosis, in and of itself, is only helpful if it assists the people with that label, isn’t it?” King said. “It’s only helpful if it serves a purpose for that person’s journey. For me it has, because it’s helped me to understand. It’s helped me to not feel mad.”
The researchers will continue to look for and debate a biomarker in the brain, or definitive criteria of symptom presentation. In the meantime, we—the suffering, and the witnesses to suffering—may have to come to terms with how big a role belief plays, and will continue to play, in the labeling and the experience of disease. As well as with the knowledge that for each person, getting a diagnosis will mean different things. Some will find a cage, and many others, their freedom.
*This name has been changed to protect the person’s identity because of the sensitive nature of the information she shared. (source)
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