Hoax hunter: I bust people who fake illnesses online

When someone is fighting cancer or watching their child fight cancer, they’re extremely vulnerable, and many open up to support communities. Thousands of people had followed the Dirr family; every Facebook update had hundreds of likes and comments. The family’s digital footprint went back at least a decade.

The day I exposed the Dirrs and Eli as fictional, emails poured in from hundreds of people who had interacted with the Dirr family. A community of internet sleuths was born as more and more people began picking apart the story. We determined that there were seventy-one fake Facebook profiles associated with the family. The creator of the hoax had spent years on this, creating fake family and friends to interact with the main characters. Just thinking about the time and energy needed to create over seventy email addresses, create that many Facebook profiles and search the internet for pictures representing each person blew me away. The web of deception had stretched out to all corners of the globe for years—I heard from people in Europe and Africa and Australia who had received awareness bracelets from the Dirr family and who were in absolute shock that their friends didn’t exist.

Someone sent me the return address label from a Warrior Eli package and that eventually led me to the person at the center of the hoax: a 23-year-old medical student named Emily Dirr.

Emily had invented the Dirr family when she was a teen as a creative way to waste time online. It snowballed from there. After reading the blogs of childhood cancer patients and admiring the strength they showed in the face of adversity that would cripple the strongest adult, she decided to make Eli a cancer patient. As people showed interest in the Dirr family story, she spent more and more time pulling the strings of her imaginary world.

Emily wrote an apology for my blog and when I posted it, the childhood cancer community, where the Dirr family had been beloved and respected, exploded. My email box blew up with stories of people who felt betrayed and hurt by Emily’s lies: a mother who left the bedside of her dying child to comfort a Dirr after a setback in Eli’s cancer battle; a teen who’d considered J.S. Dirr to be a mentor and who had handed out hundreds of plastic ‘Warrior Eli’ bracelets at her high school; and women who had cancelled Mother’s Day plans with their own children because they were overwhelmed by grief over Dana’s death. They were devastated—and didn’t believe Emily realized the extent to which she had hurt the people who believed her.

In investigating other hoaxes, I’ve read hundreds of blogs, support group posts and Facebook pages of people documenting their illnesses or travails on the internet. Most of them are true, but a small percentage of them are crafted hoaxes.

Telling the difference can be challenging, but the biggest red flag for me is if a story has constant roller coasters of drama.  Even the most intense cancer battle has moments of tedium and boredom.  If someone is coding every other day, slipping into a coma only to pull through and update their Facebook status, that would grab my attention to look at it more closely.  When a blog reads like an episode of Beverly Hills 90210, there’s a good chance it’s fake.

So why expose these blogs as fakers and open the wounds of people who have been tricked by them? When I first started blogging, I didn’t even think about that. To me, figuring out who the culprit was and trying to get a window on their motivation was the most important thing. Now, I’m more pragmatic about it.  I don’t blog about every hoax I uncover. If someone has only a small following or if they haven’t really hooked many followers, I will contact them in a private manner. Most of the time they shut the blog down.  Yes, people wonder what happened to them, but people let blogs peter out all the time. The end of a hoax doesn’t have to be a big dramatic reveal of the mastermind behind it in order to have a successful resolution for me.

I have so much sympathy for people who have been lied to by those with ‘Munchausen by Internet,’ but I’m also troubled by the way they can so quickly transform from supporters of a person with a fictional illness to crusaders against one with a psychological disorder. I’ve seen people form digital lynch mobs and demonize the hoaxers as evil, soulless villains.

But it’s more complicated than that. You’d think people I’ve exposed would hate me, but instead I’ve become friends with several of them. They suffer from a disorder that makes the allure of online attention too attractive to ignore. One woman writes me when she feels compelled to start another imaginary tragic story online. She doesn’t want to, but like an alcoholic, she has to fight off the urge.

I’ve told hoaxers to write about their own very real struggles with Munchausen by Internet rather than fabricated ailments, but so far, no one I’ve talked with has run with the idea. Many feel incredibly guilty about the people they’ve hurt with their lies. At some point, while writing their fake blogs, they stopped realizing the people hanging on every word of their stories were real people with attachments and emotions. Knowing that they’ve caused so much grief has brought many of the hoaxers a lot of pain. They’re not demons.

But when someone makes up a story online and gets people invested in the characters, it’s an incredibly cruel thing to do to their audience. Yes, people cry over fictional characters in a book, but when the people in a story are believed to be real, readers connect to them in a much more intimate way. They pray for them, shed tears when they know the characters are in pain, and genuinely grieve when they die. Donations are made to charities in the fake character’s name. People lose sleep over their stories. This is manipulative and harmful to people who follow their stories—so my hunt for fakers must continue.

Taryn Harper Wright was one of the speakers at The Real Future of Deception, a live journalism event held in New York on September 14, 2015.