How YouTubers are fighting the stigma around dissociative identity disorder
While some of their viewers may be seeking sensational content, the community of vloggers with DID -- or multiple personalities -- are helping support each other and raise awareness around the rare condition.
Jamie is 30. He’s intelligent, charming and good looking -- a golden boy. Ed is more withdrawn, dressing in gothic clothing and channeling his emotions through art and cooking. Jake is a nature-loving Buddhist; a vegetarian with blonde hair and a Disney-prince face. Ollie is 17 and spends his time playing video games, cycling and reading random QI facts. Then there’s Jess, the 26-year-old woman that hosts them all.
Jess has dissociative identity disorder (DID), also known as multiple personality disorder. An extremely rare and controversial disorder -- it occurs in less than 2% of people worldwide -- the illness is described in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a disruption of identity characterised by two or more distinct personality states. These personality states are known as alters -- alternate personalities that have their own individual names, behaviours, memories, voices and experiences. Sufferers often experience blackouts or "gaps" in their memories, where their "alters" will emerge to control how they think, speak and act.
“It’s the brain’s way of defending against enormous, ongoing, continuous threat”, says Dr Mike Lloyd, a Consultant Clinical Psychologist who specialises in dissociative disorders and trauma. DID is born from trauma, often from a young age when a child’s fight-or-flight response fails to protect them. Instead, the brain fragments to cope. “All these different experiences get locked into different places within the brain’s memory systems. And the nature of people means that these separate compartmentalised experiences become identities in their own right,” says Dr Lloyd.
Jess was diagnosed with DID in 2011 after stumbling across information about it online and realising her symptoms matched. “As far as I was aware, I had these people in my head for a very long time,“ she says. “I didn’t really know what that was. I just kind of knew it wasn’t normal and tried to suppress it.”
After Jess was professionally diagnosed, she didn’t have a lot of resources. Specialists were sparse and she couldn’t afford private therapy, so turned to self therapy and watching YouTube: “The only things I could find were outdated documentaries with people in straitjackets and I thought, oh my god is that my life?”
This inspired Jess to set up her own YouTube channel, MultiplicityAndMe, to discuss her DID in the hopes of helping others with the condition to feel less alone. “I started talking about my experiences and introduced the alters,“ she says. “I then did a documentary with the BBC called Diaries of a Broken Mind, which was a hit, and went on This Morning to talk about it. The world was a very different place back then and the comments I got were so horrible that I just deleted my channel and forgot about it for two years.”
Some time around 2014, after Diaries of a Broken Mind won a Mind Media award for Best Documentary of the Year, Jess felt inspired to give YouTube another go. “I try to educate people by finding something different to do. So I have actors that play my alters in some of my videos and they’re given scripts that are recited and made by the alters so it’s as true to verbatim as possible,” says Jess, who now has almost 200,000 subscribers.
While cases of DID have existed for a long time (even going as far back as the 1800s), in recent years the disorder has become more ubiquitous in pop culture. It was even the focus of M Night Shyamalan's 2016 horror Split, which is strongly disliked within the DID community. The disorder has also become more of a talking point on YouTube, which has been a mixed blessing for sufferers. While it undoubtedly brings more awareness to DID, it has also led to viral videos like the recent one from infamous vlogger Trisha Paytas, in which she claimed she has "multiple personalities" and blamed some of her bad online behaviour on her "alters". After the video went viral, the controversial YouTuber was accused in the comments of misrepresenting the illness, attention seeking and even having Munchausen's syndrome. "As someone who has DID I’ve gotta say, this is so humiliating to watch," one commenter wrote.
Earlier, on 4 March, fellow YouTuber Anthony Padilla uploaded a video to his YouTube channel entitled: I spent a day with MULTIPLE PERSONALITIES (Dissociative Identity Disorder). The video, which involved Anthony interviewing those with DID discussing their alters or "plurals", generated almost 5 million views, proving the fascination people have for this particular subject. “There’s a desire for information about the unusual,” Dr Lloyd says. “There are millions of people in the world that have DID and don’t know what it is, and when they go to the doctor, they’re being told, 'you’ve got psychosis or a personality disorder, you’re making this stuff up, you’re attention seeking'. Or it’s culturally or religiously significant in terms of say, possession or religious experience. They’re not being given good quality information because the doctors they’re going to see have not been taught this stuff. YouTube, in some ways, is helping to replace what is absent in a lot of the medical professions.”
YouTube has become a popular platform for mental health vloggers in general: those with misunderstood diagnoses are using their platforms to educate others and reveal the rawest sides to their conditions, be it panic attacks, hospital admissions or, in the case of those with DID, alter switches. While this can help others to better understand what it’s like to live with such conditions, there is also a concern that it can sensationalise them for clickbait. “When you’re putting out content, it’s a very fine line to draw with an audience to be authentic versus playing up to the circus crowd,” says Jess. “I don’t want to make this disorder a circus but more of a museum. You come for the interesting artefacts but you stay to be educated.”
Dr Lloyd only has a problem with YouTubers making things up or delivering unhelpful information. “If someone is going on YouTube and saying 'I have DID and this is my experience of my life', that’s great, because what they're doing is opening a door to their world, not telling people what they should be experiencing,” he says.
After years of on-off discussion over the validity of DID, and argument over whether it should be removed from the DSM entirely, a 2019 research paper in The British Journal of Psychiatry suggested that an MRI scan could accurately distinguish between individuals with DID and those without on the basis of brain structure. Technology like this has the potential to not only put an end to misdiagnoses, but also to the scepticism surrounding the disorder. However, Dr Lloyd notes that it’s not likely to be rolled out any time soon: “It’s amazing research but it’s not really something we can replicate in the everyday.”
While YouTube videos of people switching between different alters may largely be drawing in an audience of outside spectators fascinated by the unusualness of it all, they are also helping to create a community where those with DID can support one another in a time where professional knowledge and treatment for this condition remains limited.
“I just want more research to be done on DID and I feel the best way to get that out there is for more people to talk about it," Jess says. "The more people talk about it, the more interest that generates and then, hopefully, the more research that generates. That’s the power of the internet I guess."