Phony tragedies go viral

Emily Dirr sent “Warrior Eli” wristbands to supporters of a boy with cancer.  CREDIT: Richiele Marie Sloan-Warrior Eli Hoax

The Dirrs of Saskatchewan had all the makings of a young power couple. John “J.S.” Dirr worked as an officer of the Royal Canadian Mounted Police, while his wife, Dana, was a trauma surgeon at a hospital. The two ran a busy household brimming with adorable, smiling children – 10 in all, including 5-year-old Cliff Elias, nicknamed “Warrior Eli” for his ongoing fight against cancer.

On Mother’s Day in 2012, tragedy struck. Dana died after a head-on collision with an out-of-control speeding car. She held on just long enough to give birth to the couple’s 11th child, Evelyn Danika. J.S.’s heartbreaking Facebook posts describing his wife’s struggle to live and her eventual death went viral, and outpourings of sympathy and sorrow from thousands of strangers, including many parents of children with cancer, came flooding in.

But the many followers of their story soon discovered that the Dirrs didn’t exist.

The family and its social circle of at least 71 Facebook personas were being puppeteered by a single person. Emily Dirr, then a 23-year-old woman from Ohio, had spent countless hours over 11 years on fictional posts, profiles and virtual fundraising campaigns for childhood cancer foundations. She even went so far as to send “Warrior Eli” wristbands and care packages to hundreds of sympathizers.

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The ruse is being labeled a case of Munchausen by Internet, a modern take on a mental disorder that involves faking an illness for the purpose of extracting attention and nurture from others.

Munchausen syndrome was identified and coined in the 1950s and is included in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders. The Internet-abetted version, not yet recognized in the DSM, is one that mental health officials say is also a real ailment, not just an online ruse to extract money.

“Actually, Munchausen by Internet has now become more common than real-life Munchausen syndrome because it’s so easy to do. It used to be that real-life Munchausen patients would have to go to medical libraries, research the illnesses they would feign and go to doctors’ offices to reenact the symptoms,” said Marc Feldman, a clinical professor of psychiatry at the University of Alabama who coined the term “Munchausen by Internet” in 2000. “Now they don’t need to do any of that – instead, they can go online and deceive hundreds or thousands of people.”

Unlike malingerers, who play the sick role for monetary reward or to avoid something undesirable (e.g., work, school), people with Munchausen by Internet crave only the emotional gratification that comes from eliciting care and concern. Emily Dirr explicitly asked J.S.’s followers not to send any donations to him, instead directing them to a fundraising page where all of the proceeds went to legitimate childhood cancer research.

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They go to extremes to tug on the heartstrings of Internet strangers with sad status updates and photos: posting images of their shaved heads; stealing photos of real patients and posting them as their own; and using medical expertise to create believable lies about their supposed illness or injury.

Emily Dirr was a medical student in Ohio who started the hoax as an 11-year-old looking for a distraction from her troubled family life.

“It started almost as a fiction writing, but the more time I spent escaping to it, the more ‘real’ it became,” she wrote in a public apology posted after a medical-hoax blogger grew suspicious and found a trail of stolen online photos that eventually revealed the lie. “This was never about personal gain for me. This whole thing snowballed from an escape for me into trying to raise awareness and funding for pediatric cancer, although it was completely in the wrong way.”

In 1951, British physician Richard Asher described three cases of what he called Munchausen’s syndrome – named after a fictional character who told absurd tall tales about his many adventures – in the Lancet. The patients checked themselves into hospital after hospital, insisting they had acute illnesses and often recounting fantastical histories to anyone who would listen. Today, Munchausen is considered the most severe type of factitious disorder, a group of mental illnesses in which a person feigns a physical, emotional or cognitive condition.

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Dirr’s hoax reads suspiciously like the plot of a bad soap opera. In the first six months of 2012 alone, for instance, J.S. suffered from a heart condition that almost killed him, Warrior Eli’s cancer relapsed for the fourth time, and J.S. and two of his children were hit by a semi whose driver was both drunk and texting. Then, as a crowning touch, Dirr chose to have Dana killed off on Mother’s Day, but only after giving birth to the family’s 11th child.

“We’ve all heard the expression ‘It’s too good to be true’ – but it’s also the case that if it’s too bad to be true, you start to wonder,” said Feldman, who has studied patients with Munchausen syndrome and other factitious disorders for more than two decades. “Some of these individuals just pile on the catastrophes.”

Because of his specialization in factitious disorder, Feldman hears from both victims and perpetrators of Munchausen by Internet. One of Feldman’s favorite cases involves a supposed 15-year-old boy named Chris who suffered from terrible migraines. He posted about his many struggles on an online discussion board offering support to migraine sufferers: Not only did Chris have a deaf mother, an alcoholic stepfather and a brother who had recently died from AIDS, but his estranged father also had physically abused him and left him with a seizure disorder.

Yet Chris wrote compelling, inspirational tales about his life as a medical student, skateboarding three miles a day to take the bus to class and moonlighting as a nightclub drummer to pay for his migraine medication.

“I’ll never forget that case, even though it’s been 15 years since I learned about it,” Feldman said. “It was so egregious and involved that it’s the perfect teaching case. I talked to five of his victims who were all otherwise wonderful and intelligent people, but there must have been a part of them that wanted to believe this was true. This was when ‘Doogie Howser, M.D.’ was popular, and who knows, maybe that’s why they thought 15-year-olds could be doctors?”

Nevertheless, the pain and betrayal experienced by victims of Munchausen by Internet are real. People can become emotionally entangled with perpetrators and may use false medical information to influence their own health-care decisions.

“One of the victims called it emotional rape, which sounded melodramatic when I first heard it,” Feldman said, “but some of these people have spent dozens if not hundreds of hours devoted to this person” whom they encountered online. “They felt robbed, cheated and even depressed.”

Experts believes Munchausen by Internet has similar origins and motives as other forms of factitious disorder, which is thought to involve both biological and psychological factors. Factitious disorder is associated with childhood separations, emotional neglect or abuse, hypochondriac preoccupations and a history of hospitalization in early life. According to one study on factitious disorder, half of patients also had borderline personality disorder, while a third showed signs of narcissistic personality disorder.

“It sounds almost too basic, but most of them say that they have this deficit in their lives where they feel isolated and alienated,” Feldman said. “They could guarantee that going on the Internet to join a support group would counter that isolation, and they’d be able to get what they can’t get any other way.”

A 2007 survey of 109 doctors in the journal Psychosomatics reported the frequency of factitious disorder among their patients to be around 1.3 percent. However, the prevalence of Munchausen by Internet is difficult to measure due to the breadth and anonymity of the Web.

“The irony with people who commit Munchausen by Internet is that they do often have mental illnesses,” said Jacqui Taylor, an associate professor of psychology at Bournemouth University in England who specializes in the psychological impacts of the Internet. “Some researchers look at when these people were children – such as emotional trauma or other illnesses that have resulted in them seeking medical attention that then becomes exacerbated when they are adults. But most of the work that I’ve reviewed is showing it could be some kind of mental-health condition underlying this type of behavior.”

“No one who is happy in their lives decides to create 71 fake Facebook profiles and a kid with cancer,” said Taryn Wright, the blogger who exposed Emily Dirr in 2012.

Wright discovered through a Google Image search that supposed photos of the Dirrs – depicting such events as hospitalizations, car accidents and children’s birthday parties – had been lifted from blogs and public Flickr accounts.

“It just seemed fishy to me. I figured the news would have picked this up, but I couldn’t find anything. I thought, ‘That’s really frickin’ weird,’ and I couldn’t find anything on Google that wasn’t written by someone from the family,” she said. “These people had high-profile enough jobs that I figured I would have found something about them if they were real.”

On the day after Mother’s Day, she wrote out all of her findings on Warrior Eli Hoax, a blog she created. Wright said she received 100,000 hits that first night, including many from the childhood cancer community who had been taken in by the tale.

Wright now heads a team of Internet sleuths that she calls on to help investigate possible hoaxes that she comes across. Members of the group – a cancer survivor, a paramedic and a medical instructor – each have an area of expertise. So far, Wright says, the team has found and publicized 17 medical hoaxes.