There are online groups dedicated to people diagnosed with Dissociative Identity Disorder, as well as to those with a generally plural experience. The plural community is a broad group of people, offline and online, who unite over the common experience of being “more than one”.
Given the wide variety of meeting spaces available online, the plural community itself is quite diverse. There are a wide variety of plural experiences in these spaces, and some spaces are divided on the basis of these experiences (or on the basis of beliefs about these experiences). Interactions range from sharing experiences to exchanging resources, arguing over community language, and seeking support.
There is sometimes a political aspect to these groups. This ranges from promoting the acceptance of plurality as an identity to questioning the pathologization or non-pathologization of plurality and pushing for better representation of plural experiences.
Online communities for plural groups vary wildly:
- Some are inclusive to all systems; others are closed-off to specific experiences.
- Some groups encourage conventional therapy and treatment for DID. Others reject the notion that psychiatric treatment is necessary at all.
- Some spaces focus on discussion of plural experiences or associated labels. Others talk relatively little about plurality itself, instead offering a space to exist openly as plural without explaining what that means to others. Still others revolve around writing and sharing resources to help other systems.
These communities can be a great help:
- They provide resources for improving your ability to live life as plural, such as by improving communication between parts, reducing trauma responses, or learning to cooperate.
- They provide access to other people that may understand your experiences, which can be relieving in a world where most people are not familiar with plural frameworks.
- They can reveal alternative routes to recovery that may work well for your system.
- They can expand your knowledge of what plurality can look like, which can free you to live more honestly.
These communities can also be immensely harmful:
- Not all advice offered is beneficial. Some advice may worsen dissociative symptoms or otherwise make your life harder to live.
- Community infighting is common, and encountering these arguments can be quite distressing for some people.
- Community norms can be harmful, and they tend to be pushed quite aggressively. For example, hostile attitudes towards Fusion (Plurality) are common in online plural spaces, whereas fusion is often seen as the ideal recovery path in psychiatric spaces. Systems wishing to fuse may encounter opposition from the communities that they’ve learned to turn to for support.
- Some online spaces have a tendency to decide that certain systems are “not real” even if they have a DID diagnosis (or other form of external agreement about their plurality’s existence). Being openly plural on the internet can put you at risk of being harassed by others for your experiences.
- Larger plural communities may host a lot of experiences that look nothing like DID. These spaces can be helpful for gaining perspective, but they can also be upsetting or frustrating for those who are seeking DID-specific support. Likewise, DID spaces may not be helpful for systems who don’t ascribe to the medical model of plurality.
For those able to think critically, online plural communities can be a way to find others that understand their experiences. They offer many resources for improving your situation and finding your own path to recovery. However, there is no one community space that will help every system, and some spaces may harm you. It’s therefore essential to think about your goals when engaging with these communities. Critical thinking is especially important if you’re easily influenced by others, as the norms of these spaces may shape how you think about your experiences.
If a community is harming you, then it may be wise to take a step back to assess why that’s the case.
On Dissociative Identity Disorder Online
For survivors who have DID, it is also important to realize that there are many groups on the internet who have a different experience of having multiple identities than that which people with trauma-related DID experience. Survivors with DID caused by early childhood trauma may find this is so different to their own experience of being multiple that they cannot relate or connect. They may even find it distressing. Again, it is important to look around and find the right group for you.
International Society for the Study of Trauma and Dissociation, Wise Social Media Use for Survivors of Complex Trauma and Dissociation
DID and YouTube
The day after she took the MID (and was diagnosed with DID), Wyn went to see M. Night Shyamalan’s 2017 film Split, a thriller about a murderer with multiple personalities, on its opening night. Wyn watched the movie horrified, feeling as though the film were telling her, “You’re a monster. You’ll never have a family.”
Later that week, “desperate for reassurance,” she went on YouTube and searched “multiple-personality disorder.” Wyn found channels run by young people with DID, including one called MultiplicityAndMe featuring a bubbly 25-year-old named Jess, who was from Wales and had blonde bangs, a supportive husband, and a stable job in the health-care industry. Since 2012, Jess had been posting educational videos that doubled as windows into daily life with the disorder. Instead of repressing her “alters,” Jess treated them as just another part of her — and her followers seemed to love her for it. She now has more than 200,000 subscribers.
Wyn found more DID channels. Many vloggers proudly referred to themselves as “systems” of personalities and to their birth name as that of the system “host,” deemphasizing the notion that any of their identities was more real than any other. Jess had four alters, all male, named Jake, Jamie, Ed, and Ollie. Together they managed which of them “fronted” at any given time, sharing airtime on her channel and answering their own Q&As. The systems in these videos pushed back on the idea that having DID made them bad parents or violent or that they were faking it. Instead of seeing their alters as fuzzy, scary presences, the hosts said, they had gotten to know them, and hosts and alters could communicate with one another easily. Many of the vloggers used they/them pronouns — in a plural sense.
When I first saw the YouTube channels, the videos seemed at once astonishing and mundane — then still more astonishing for being so mundane. One vlogger filmed herself organizing a hotel room for easy access to her boarding pass if she were dissociating when it was time to head to the airport. When Wyn first saw them, the videos gave her hope.
Of course, DID is catnip for YouTube. Vloggers have long found an audience by leaning into niche identities — imagine encountering someone who says they have 15. “If you’re not used to it, DID can be very striking when you see it,” even for clinicians, said David Spiegel, a Stanford professor and leading researcher of dissociation. The channels appealed to people like Wyn who had been diagnosed and were looking for validation and support, but plenty of viewers came simply because they were fascinated.
Her therapist seemed concerned primarily about how others might respond to her disorder, Wyn said; she generally felt like her therapist encouraged her to “keep (my diagnosis) low-key.” Therapists often worry that their patients, many of whom have histories of severe childhood abuse, will remain vulnerable to exploitation as adults.
But Wyn, who had recently gone back to college to study geology, decided she did not want to hide herself because of how other people might feel about her disorder. She said being upfront online felt like saying to society, “I’m not going to shut up.” Wyn’s brother is autistic, and she saw DID YouTube as analogous to channels for the deaf or autistic communities. “I have been watching the autistic community go from ‘Please just understand us’ to ‘We’re cool; we just have different ways of communicating,’” she said.
“I found it impossible to watch those videos,” said Loewenstein, who founded the Trauma Disorders Program at Sheppard Pratt psychiatric hospital in Baltimore, of DID YouTube. He has a strident, almost gruff way of talking about DID, as though years of public misperception have worn him down. He has treated people with DID for 40 years.
Part of it, he said, was the way DID vloggers represented their alters. He thought the format — “this ‘all these people in one body’ stuff” — was inevitably sensationalistic, but his main concern (in addition to privacy issues) was that being public on the internet about DID could make dissociation worse. If the therapist’s job is to carefully help integrate the pieces of a fractured self, then intentionally cultivating the differences between the parts for an online audience and “interacting with these different states,” Loewenstein said, only encourages them to become more differentiated. “It’s completely anti-therapeutic.”
Bethany Brand, another leading DID researcher and therapist, was more qualified in her criticism. “There are many positives to it,” she said of YouTube. “People feel understood and like they’re not as alone.” But she too was concerned about the way displaying the disorder for public consumption might worsen dissociative symptoms. It wasn’t exactly self-harm, yet it certainly wasn’t self-care. “If their parts become more elaborated online, I certainly wonder if that will keep them from moving toward integration.”
People with DID, as Brand and other clinicians I spoke with pointed out, often resist the idea of letting go of dissociation. Although it is a resilient and adaptive coping mechanism, dissociation also cushions sufferers from painful realities. “It is really common for clients to be scared to death not to dissociate so much,” Brand told me. She wants to see her patients rely less on dissociation as a way of coping and for their involvement in their inner world to dim. “When people get sick of talking about dissociation, that’s something you want to see.”
On her channel, Wyn encouraged other people with DID not to be nervous about the prospect of fusing their dissociative parts. In one video, she likened “final Fusion (Plurality)” to blending different shades of paint into a beautiful new color. Loewenstein echoed this metaphor. “It’s not that everybody is gone,” he said of self-states beginning to cohere. “It’s that everybody is more here than ever.”
Yet over time, Wyn found herself questioning the idea that the only way to be healthy was to have one cohesive self. Some of her alters passionately opposed becoming part of one whole. Wyn had by this point watched every video by every DID vlogger she could find, and the content seemed like clear proof that people with DID did not always lead catastrophically dysfunctional lives. Jess of MultiplicityAndMe still reported suffering from symptoms of PTSD, but she’d also just had a baby and seemed to Wyn like any other young mom.
By October 2018, less than a year after she started her channel, Wyn decided that fusion didn’t fit her personal desires anymore. “What if I was in that position?” she wondered, speaking of how her alters might feel. “If someone told me I had to fuse, I’d be devastated.”
The psychiatrist and psychiatric anthropologist Laurence Kirmayer argues that the conclusions psychiatry draws about dissociation and its optimal treatment are inseparable from the values of western societies, particularly the emphasis on “autonomous and coherent personhood” and “on facing, owning, and integrating traumatic memory.” In other cultures, particularly in parts of Latin America and India where spirit possession is practiced, people are not necessarily expected to recover from dissociative episodes by “facing” or “owning” traumatic memories verbally. But here, someone who does not — or who cannot or who does not wish to — integrate her dissociative experiences into a coherent narrative, especially in talk therapy, is unlikely to be considered mentally well.
Instead of fusion, some people in the DID community, even those who said they were in treatment, said they preferred a term like healthy multiplicity or functional multiplicity to describe their treatment goals. The language expressed a desire to remain in a divided, dissociated state without any of the internal conflict that dissociation implies.
Most vloggers who espoused this framed it in a way that would be familiar to disability-justice advocates, who have argued since the 1970s that society’s barriers to access are what impair a disabled person, not their physical or mental differences. A lack of ramps, not an inability to walk, keeps a person who uses a wheelchair from accessing certain buildings. One YouTuber and activist in their 20s who calls themselves the Rings System told me they thought focusing on whether they would fuse was beside the point. “What I need is not to become the perfect epitome of health,” they said. “It’s for society to be accessible to me even if I’m not.”
Wyn now thinks that “being on YouTube was massively detrimental to our mental health,” but her feelings about her videos themselves and the ideas expressed in them hasn’t changed. Her channel remains live, a parade of pink-tinted thumbnails that continues gathering views.
Wyn expects to remain multiple for the rest of her life. She wouldn’t have entered this frame of mind without the influence of other DID-content creators, she told me. Her therapist had advocated fusion; it was all her husband knew to recommend as well. “I might have pressured my system into fusing against their will if I hadn’t been online,” she told me.
Wyn said she felt good. She also missed the beginning of two of our Zoom conversations, once because she had spaced out while doing an art project, she said, and the other time because she had spent the night tormented by “trauma nightmares” and gotten a terrible night’s sleep, although she now said this happened rarely. Things with Andrew were going well. Starting a family was still “up in the air,” she told me. “It has nothing to do with my disorder, though. It’s more that the state of the world right now doesn’t seem like the best environment for a child.”
She made one last video this spring to protest a new Apple TV+ show about DID called The Crowded Room. The first season will feature the actor Tom Holland playing Billy Milligan, the first person to successfully use DID to claim an insanity defense after committing several rapes in the 1970s. “If they want to humanize DID, focusing on the story of a serial rapist is not the way to do it,” Wyn says in the video. She looks angry and confident. Below it, she links to a Change.org petition to shut down the series. “There are tons of people who live happy, functional lives with DID who do not cause harm,” she says. “I’m one of those people.”
Lizzie Feidelson, 2021, Meet My Multiple Mes
DID and TikTok
The DID community on TikTok is growing not only in popularity, but also in number. And as many mental health professionals urge young people to reconsider which experiences require pathologizing and what’s just part of growing up, the reality is that social media is making that distinction exceedingly more difficult.
Some corners of this community have been criticized, sometimes by other community members, for glamorizing the condition and experience of trauma. Accusations of flippancy when discussing and showcasing certain behaviors, such as “switching,” which is when an individual changes alters and can be triggered by stress, has fueled the ongoing debate as to whether TikTok is a safe place for folks with certain mental health conditions.
But dissociative identity disorder can be extremely isolating, points out Aubry Bakker, PhD, a neuropsychologist who has extensive experience working with teens diagnosed with DID. Participating in TikTok’s DID community can remedy some of that isolation, she said. And having filmed moments can help fill gaps in memory and help individuals get in touch with their identities.
No one should be pressured to present proof of their trauma or medical diagnosis, but still there are individuals on social media spreading misinformation about DID, which only adds to the confusion of those already questioning their mental health.
When a patient is self-diagnosing such serious conditions as post-traumatic stress disorder or borderline personality disorder, Rebecca Semel’s aim is to validate her clients and help them make sense of their experiences. But social media has added a new level of complexity to treating patients.
“It’s so hard to pull apart for a teen what is disordered and a pathology, versus what is just growing pains,” Semel said.
On social media particularly, the severity of DID is often misunderstood by those who don’t have it. And, derivative portrayals of the disorder and the spread of misinformation can harm the already-vulnerable individuals who navigate the condition every day.
Heather Hall, MD, a psychiatrist who’s been treating dissociative disorders for nearly 30 years and serves on the board of directors for the International Society for the Study of Trauma and Dissociation, has seen patients with DID that are tormented by what they see online. After reading claims that DID isn’t real, one of Dr. Hall’s patients began to question her own diagnosis.
“She wishes it wasn’t true,” Dr. Hall says. “‘It’s not true. I think maybe it’s not true. Maybe, maybe you’re not,’ she keeps telling herself. Because she would love nothing better than that.”
Still, as Semel pointed out, invalidating people’s experiences isn’t helpful either. Some people have gotten diagnoses of various conditions after recognizing their symptoms on TikTok, and it’s been a great relief.
That’s all to say identifying a mental health condition as misdiagnosed as DID is hard to begin with, and social media is both making it better known, and creating room for more misunderstanding.
Somewhere along the line, Torres-Mackie said some people started pathologizing experiences that don’t signify a problem.
“Folks start attaching clinical meaning and feeling like, ‘I should be diagnosed with this. I need medication for this,’” Torres-Mackie said. “When actually a lot of these experiences are normative and don’t need to be pathologized or treated.”
But self-diagnosis is almost inevitable. Who among us hasn’t consulted Doctor Google when something feels off? Even mental health professionals aren’t immune.
“If you talk to any therapist, when we were in grad school and we started going through the DSM, most of us were like ‘Holy shit, that’s me,’” Minnesota-based therapist Shani Tran, LPCC. said.
The difference is that even if you aren’t seeking out mental health symptoms on social media, the algorithm may give them to you anyway.
If you are concerned you have a mental health condition you observed on social media, examine the parts of the condition to which you do relate just as thoroughly as the ones you don’t. Then bring your conclusions to a trusted adult — which doesn’t necessarily mean a parent, Tran noted. School counselors can be a great resource, as well as mental health hotlines or programs in your area.
“This is the conversation starter,” Tran said. “This is not the answer.”
Lo Styx, 2022, Dissociative Identity Disorder on TikTok: Why More Teens Are Self-Diagnosing With DID Because of Social Media
The Online Community: DID and Plurality (Excerpts)
The online (plural) community refers to a broad spectrum of internet platforms and the people who utilize them, and includes internet users around the world in many languages. The primary focus on this aspect of the online community is identification with and support for the current, ongoing, experience of “Plurality”, a term coined to be more inclusive than only that of traumagenic multiplicity.
A different aspect of the online community is that of those attempting to provide resources focused on healing trauma. The many number of memoirs and conference speakers with lived experience are an example of this. More recently, there are some podcasts which have become part of the online conversation of lived experience and both how to cope with and how to treat trauma.
These online support groups, discussion threads, resources, and shared experiences have evolved over the years into a more organized state both linguistically and politically – making Plurality its own culture.
This organization as a community developed not only through shared experiences online and at conferences, but also in the therapy office itself. The shift from the abreaction-based therapy of the 80′s and 90′s to the staged-approach of the late 90′s and 2000′s developed into the more recent structural dissociation emphasis on communication, cooperation, and collaboration. In essence, Plurals took what they had been asked to do internally to develop safety and stability and implemented it externally to create a community in a way that had never before existed.
It is of clinical significance that this generally and naturally divides the Plural community into three notable groups. One group, more familiar to clinicians, includes those with dissociative disorders of traumagenic origin who are currently in treatment. A second group falls between the other two, and may include those aware of their symptoms but not yet in treatment, those awaiting an accurate diagnosis, those with an accurate diagnosis but waiting for an appropriate clinician.
The third group that may be less familiar to clinicians, includes those identifying as Plural, but not considering themselves “disordered”. This group may include those with philosophical or spiritual practices that lend to an experience of multiplicity but do not consider themselves traumatized by this, as well as those who have chosen functional multiplicity as a goal for treatment rather than integration – and who do not consider themselves “disordered” because they are functioning and not distressed by symptoms. This third group tends to have a very developed sense of political identity as Plurals and they present very differently in session than those with dissociative disorders.
This group often has a very elaborately developed inner world with relationships rich in detail where all parts of the system seem to have knowledge and access, as well as awareness to where they do not have access and why. They are likely to have a high number of “fictive” alters, which included extensive and detailed backstories from movies or video games. Often, the development of the inner world and relationships between parts is something that (this category of) Plurals enjoy and find soothing, which is distinguished from those with dissociative disorders, who are generally phobic of both their internal world and interaction with other parts. This description may be their experience of plurality, but does not fit the clinical definition of DID, partial DID, or OSDD. It does correspond with what Eli Somer has described as “Maladaptive Daydreaming”.
Reinders (2020) reported that in the average time from seeking treatment to receiving a correct diagnosis of DID, the average person receives four incorrect diagnoses, spends seven to twelve years in mental health services, experiences years of inefficient pharmacological treatment, and endures several experiences of hospital admission. Each of these experiences add to the trauma of lived experience, and those years of isolation from appropriate and effective treatment are a collective, historical trauma experienced by survivors that feels reminiscent of the dyadic trauma dynamic.
The question, aside from the experience of plurality, becomes “Who am I while I wait for correct treatment?” This does not even include the time it takes for good therapy, which can even be decades for relational trauma. Plurality provides a whole-life encompassing identity with which one can identify, and with which identities or selves one can agree, regardless of the wait.
Further, while Plurals wait for treatment, they now have access to each other in the online community. In a podcast interview with Kluft (2020), the discussion included how therapy used to be a single-point focused experience. Kluft described the dynamic of decades past as the therapist’s office being the only outlet and safe space for a survivor to “do” therapy. In contrast, now there is a diffused-focus experience of therapy, because the survivor also has access to published works, online resources, virtual support groups, social media, YouTube, TikTok, blogs, podcasts, conferences, and organizations. This access to knowledge, emotional processing, and somatic practice on their own time empowers Plurals in a way different than any other therapeutic generation.
While many patients may have little to no interaction with the online Plural community, an increasing number of them will, due to younger generations’ organic fluency in the online world. Lacking awareness of the development of the online community as culture for trauma survivors, and Plurals specifically, at this point could be considered maleficence, while educating oneself on the dynamic of the online community becomes simple beneficence.
Traditional, traumagenic cases of DID have been well-documented and well-researched, with recommendations for treatment that include a phase-based and psychodynamic treatment model according to current guidelines. Cases of sociogenic plurality are only just now being discussed in literature, are distinct from traumagenic cases, and current guidelines do not apply for those reasons. However, as clinicians provide ethical and compassionate care, understanding the culture and community provides improved context for treating related issues for which these people may seek treatment.
Plurality may be a relatively new clinical experience, but is more than a passing trend at this point, and one that is increasing as the phenomenon spreads. Despite the challenges, there are also clear benefits to this, including reducing stigma and increasing support amongst survivors. Failing to recognize these culture aspects, regardless of which Plural group your client may be in, may cause significant misunderstandings.
Emily M Christensen, 2022, The online community: DID and plurality