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The Lying Disease

Why Would Someone Want to Fake a Serious Illness on the Internet?

The Lying Disease

Paul Hoppe

Most of the names in this story have been changed to preserve the anonymity of truly sick people. That said, to the extent that this story has played out on the internet, it is a matter of public record.

Valerie was lying in her boyfriend's bed early on the morning of September 16, 2010, when she detected what 12 percent of women will face in their lifetime: a tiny lump buried in her left breast.

She didn't panic. She was only 36 and healthy in a typical Northwest way—ate organic, biked 100 miles a week—and her annual breast exam had been blessedly lump-free only four months earlier. And when Valerie called her boyfriend over to cop a feel, he couldn't detect the lump. Neither could the nurse practitioner who examined her later that afternoon. Neither did the mammogram he ordered. It was an ultrasound that finally confirmed what Valerie had felt: a pebble-sized mass that turned out to be stage 2A, HER2+ invasive ductal carcinoma—in layman's terms, a rare, aggressive form of breast cancer that is notoriously difficult to treat.

The mass was so small, her doctor said it was a miracle she'd detected it at all. Then, "when he saw my lymph node, everything changed in the room," Valerie remembers. The cancer had already spread to her left arm. "He said, 'You have breast cancer, it's extremely aggressive, and you have an MRI scheduled for 4 p.m. today. Be there.'"

The following week was a blur of bone scans, blood tests, PET scans, and other tests and terminology that are all but indecipherable for those who aren't profoundly sick or working in medicine. It was a week spent calling relatives, crying long-distance, and adjusting to the abrupt new reality that she might die—soon. And, if she lived, it would be without breasts or the possibility of ever getting pregnant.

"That was probably the hardest to hear—that I could never have children," Valerie says. "I've always wanted to have children."

The bleak news was compounded by the fact that she'd been recently laid off from her job and that, as a relatively new Seattle transplant, most of her family and friends were across the country in South Carolina.

"I didn't have an immediate support system beyond my boyfriend and my cats," she says. "The isolation gets to you—you can't get a hug over the phone. It makes you dwell."

Which is why, two days after her diagnosis, Valerie began to blog about her battle with cancer. She wanted to keep her family abreast of her treatment and, hopefully, find support from someone going through the same physical and emotional struggle she was. She named her Tumblr blog CatsNotCancer because she loves cats (not cancer). Over the course of the next year, Valerie would bluntly document her daily ups and downs: How she named her breasts and the cancerous lymph node she would ultimately have chopped off; her ceremonious Viking boob funeral, where she lit boob-shaped candles and set them adrift in Lake Washington as guests snacked on boob-adorned cupcakes; the shaving of her beautiful red hair for Locks of Love ("I couldn't bear to watch it fall out"); her body's refusal to heal after her first radical mastectomy; how cat purrs help heal a mutinous body; the triumph of revealing her scarred, altered chest on Tumblr for its infamous "Topless Tuesday" shots.

"People see commercials and advertisements with cherubic bald women waving pink ribbons, but that's not talking about breast cancer and the realities of going through active treatment," Valerie explains. "After a few weeks, I discovered that I had a new mission: help people see the grim realities of cancer, so maybe they'd remember to cop a feel at their own breasts or book a checkup."

That mission began with a good-bye letter to her breasts:

"I looked at Mabel this morning (I named my left breast Mabel—my right one is Hazel) and I feel this weird mixture of anger and loss," Valerie wrote less than a month after her diagnosis. "And then I look at Hazel and feel sad too—she's being spared tomorrow but her day is coming very soon. And I wonder how I'm going to feel after the surgery when I see this void where my breasts once were. I have no idea... But I do know this. Tomorrow is the first real step toward defeating this dragon. And I have to view this as war—it is war. And tomorrow is the first battle. So for today, and just today, I'm going to allow myself a little self-pity. I may cry (and when I cry, I cry—think the Ben Stiller scene from Something About Mary. Seriously.) and I may pout. But come tomorrow morning, it's game on. I declare war. And I intend to win."

Valerie's posts were reposted, commented on, circulated around online cancer support groups. CatsNotCancer quickly gained more than 2,100 followers on Tumblr, partly because of her content and partly because Valerie took the time to respond to everyone who left messages on her blog looking for guidance, help, or empathy.

That's how she met Beth three months later, in December 2010.

"She was a fellow blogger who introduced herself and said she was going through treatment for lymphoma," Valerie recalls. "I had just undergone my fourth round of chemo and I was feeling really sick—I had no energy, and my mood was in the dumps. It was an accomplishment to put up a blog post during the day."

Nevertheless, she responded to Beth's overture of friendship, and for the first week, their communication was benign. The 19-year-old Wisconsin native, who appeared physically healthy in photographs, talked about her daily struggles with balancing lymphoma treatments and college classes (she wanted to become a psychologist), and the two talked companionably about their favorite TV show, Lost.

Then one day, Valerie received a note from Beth via Tumblr that simply read, "Can you get pregnant while on chemo?"

It struck a chord.

"I wrote her back and said, 'Well, I can't get pregnant while on chemo...' but I admitted that I didn't know her treatment and couldn't know what she was going through," Valerie says. "I did think that chemo would be really, really bad for a fetus. I mean, it's poison." She urged Beth to contact her oncologist immediately.

Instead, Beth messaged her again, intimating that she'd gotten pregnant after being raped by her uncle.

"I immediately sent her my phone number and personal e-mail address and urged her to call me," Valerie says. Beth called within minutes, and the two had their first phone conversation, during which Beth haltingly explained that her uncle had abused both her and her 6-year-old cousin (his daughter). Over the phone, Beth sounded very young and painfully shy, and yet: "She was almost casual about the whole thing," Valerie recalls. "She was hesitant to even call what happened rape."

E-mails forwarded to me by Valerie confirm her account. "Well, I guess its rape then because I did not want that at all," Beth wrote in an e-mail sent the day after their phone conversation, on December 30, 2010. "That word is so gross sounding to me. It makes me so angry. Like the whole thing is just gross, but secondly, I could have gotten really sick from that! Inconsiderate."

Beth ended the e-mail "Blah, blah, rant over lol :)."

It put Valerie on alert. "I kept thinking 'inconsiderate' is one of the last words I'd use to describe rape," Valerie says. Her skepticism grew when she received a follow-up e-mail from Beth on December 31 that read, "Well...I am officially pregnant. This is my worst nightmare. Horrible. I want to die. I am mortified :("

Mortified?

Despite her suspicions, she continued to e-mail Beth.

"I was trying to keep an open mind," Valerie says. "I'd only known this girl a few weeks, and it sounded like she had people in her life mistreating her. I just wanted to offer what support I could."

And who was she to judge the coping mechanisms of a 19-year-old cancer patient and struggling full-time student who spent Christmas being raped by her uncle?

But while Beth e-mailed daily updates on her mortifying pregnancy—"Aborting it is what [my doctor] would recommend his daughter to do. He doesn't think I could handle it mentally or physically. Blah blah."—Valerie contacted her own oncologist about the content she'd read on Beth's blog. She remembers one about Beth throwing up blood between classes at school, then skipping to the hospital to get a five-unit blood transfusion. "My doc was like, 'There's no way in hell that's happening,'" Valerie says. An adult has 11 to 13 units of blood in their body, total, and from the pictures she'd posted, Beth was a petite woman. If she'd lost half the blood in her body, she'd die, not be home in time to blog about it before dinner.

Nor would the average lymphoma patient have the energy to be a full-time student while undergoing treatment, or risk exposing herself to hundreds of germy students while actively being treated for cancer of the immune system.

But Valerie didn't confront Beth with suspicions that she was faking her sickness. Instead, to preserve her own health and sanity, she abruptly stopped answering Beth's e-mails, texts, and phone calls. "Her lying was so alien as a concept, the idea of outing her horrified me," she says. "Part of me thought, 'There's something horribly wrong with her, and if she is being abused, I don't want to make life harder on her.'"

In response, Valerie says Beth went "totally apeshit."

Munchausen syndrome takes its name from an 18th-century German baron who was famous for embellishing tales of his military exploits to anyone who'd listen. But it wasn't until 1951 that Baron Munchausen became widely associated with another crop of pathological liars: people who go to incredible lengths to fake illness or psychological trauma for the express purpose of attracting medical attention and sympathy from other people. Munchausen sufferers don't just shave their heads and say, "Look! Cancer!" They alter their medical records, starve themselves, install catheters and chemo ports, even convince doctors to perform unnecessary surgeries on them—anything to legitimize the fantasy of their sickness.

"I've encountered two women who've lied to their doctors in order to get mastectomies unnecessarily," says Dr. Marc Feldman, a clinical professor of psychiatry at the University of Alabama, whose latest book on Munchausen is called Playing Sick? "That's how desperate their need for hospitalization and love and attention is."

And still other sufferers have physically or psychologically harmed loved ones to gain attention and sympathy. Munchausen syndrome by proxy (MSP), also known as "fabricated or induced illness," was first identified in 1977. The current Diagnostic and Statistical Manual of Mental Disorders, or DSM-IV for short, describes it as causing or feigning "physical or psychological signs or symptoms in another person who is under the individual's care." Think of a parent putting feces in her toddler's feeding tube (as was discovered via hidden camera in a landmark 2009 case), or caregivers slowly poisoning their wards.

Both forms of Munchausen fall under the umbrella of "factitious disorders," a category in DSM-IV that broadly covers an array of mental disturbances in which people intentionally fake physical or mental illness. The DSM-IV is the definitive guide psychiatrists use to diagnose mental and psychiatric disorders, much like a dictionary of mental illness. If a disorder isn't identified in the DSM-IV, psychiatrists won't diagnose for it—either because they don't know about it or because insurance companies won't pay for it. So it's as if the disorder simply doesn't exist.

Munchausen and its proxy are both considered impossible to prevent and difficult to diagnose. Sufferers spend years of their lives cultivating symptoms and memorizing medical knowledge with the crazed focus of a model train hobbyist. They must; their goal is to fool medical professionals into treating them, while cultivating as much attention and sympathy as possible. If they fail, these people simply bounce to the next hospital, or illness, or audience.

A 2011 case report on factitious disorders published in Innovations in Clinical Neuroscience suggests that roughly 9 percent of inpatients in tertiary care (specialized treatments, like cancer care) suffer from some form of factitious disorder. There are no reliable statistics on how many people suffer specifically from Munchausen syndrome—partly because it's hard to obtain accurate data from people who lie pathologically—but the condition is considered rare.

Munchausen syndrome by proxy is also relatively uncommon. A British pediatric research group estimates that only one child in every 5,000 is a victim of MSP, although other studies have put the number as high as one child in every 1,100.

However, in 2001, Dr. Feldman identified a new manifestation of the syndrome, one that isn't listed in the DSM-IV but that he claims is far more common than its cousins: Munchausen syndrome by internet.

Valerie's silent treatment didn't deter Beth from contacting her repeatedly, even obsessively, in early 2011. And when her calls, e-mails, and texts went unreturned, her 6-year-old abused niece evidently e-mailed Valerie to say that Beth had been hospitalized. "I'm not supposed to be on Beth's computer or her e-mail but I'm really scared :((((((((((((((((((((," the supposed girl-child wrote on January 1. "She has to go to the hospital now and now she has ambulance and if she dies and all this blood coming from her mouth again and why does this always happen and the. If shes there fir ever than she won't be home when I'm all alone and I will cry :((((( I'm so scared for her and for me :(((."

Despite her supposed hospitalization, Valerie noticed Beth was still blogging like a champ, so she didn't respond. Another day, another message, this time from Beth herself: "Did I do something to offend you? If I did, I'm sorry."

"When I didn't respond to even that, she wrote an e-mail to apologize, and I thought she'd leave me alone," Valerie says. "I honestly thought that was the end of it."

Valerie turned her mind back to more important things, like winning her war on cancer. She was a quarter of the way through 16 rounds of chemo treatments, with one breast and 10 lymph nodes down and one mastectomy to go. Each day presented its own challenge. Most nights she couldn't sleep. There was constant pain in her chest wall and along her arm, where her lymph nodes used to be. Her skin was paler than potato flesh. Clothes felt unbearably abrasive. Her left arm wouldn't stop swelling. She was tired all the time but couldn't sleep. She was wasting away but couldn't eat. She missed riding her bike. She mourned her health.

It's important to note that Valerie not only shared these struggles on her blog but with a tight-knit group of women she met online. While she was still chest-deep in the war, she'd won an important battle: She'd found a virtual cancer support group of 10 women, all of whom were undergoing treatment for a potentially fatal illness.

Valerie had met each of the women through blogging. The women all lived across the country but they kept in touch through their blogs, texts, phone calls, and e-mails. They shared each other's treatment schedules, wig purchases, and daily consolations and desolations by embracing a level of minutiae that lends itself better to real-life friendship than blogs.

With these women, Valerie could talk about how round after round of chemo had turned her body from a svelte 127-pound cycling machine to a frail 114-pound sack of organs that got winded on a treadmill, but despite it all, how goddamn happy she felt to still be walking. She could talk about how futile it was to interview with prospective employers (she'd been unemployed for more than a year at this point) when she looked like lipstick on a corpse.

She could also talk about her anonymous troll. The one who'd appeared as her blog gained popularity, taunting her with childish nicknames like "Voldemort" and sending untraceable messages like "Everyone wants to watch you die."

What could be done about it? "Practically nothing," Valerie admits. "It was a harsh reminder that on the internet, you can say anything you want, and you can pretend to be anyone you want." So she filtered her Tumblr messages and, with encouragement from her friends, tried to put the troll out of her mind.

Then in May 2011, tragedy struck Valerie's support group: Kate, a 19-year-old leukemia patient who'd recently undergone a bone marrow transplant, fell into a coma.

"The rest of us rallied around her," Valerie says. "We called her friends and family. It was dire."

While they posted to her Facebook page, prayed, and round-robinned the loved ones at Kate's hospital bedside, tragedy struck again: A second woman in the group fell comatose.

Coincidentally, Jen was also a leukemia patient from the Midwest and was almost the exact same age as Kate. When not comatose, Jen—a talkative girl with decisive eyebrows and a moony grin—described herself as a two-time cancer survivor, according to close friends. She was cured of leukemia as a child before being diagnosed with stage 4 neuroblastoma (a form of infant nerve cancer). At that point, according to Jen, an army of doctors declared her a lost cause until, miraculously, one rogue surgeon armed with a new experimental treatment sent her cancer into remission.

Jen was an orphan. In lieu of family, she said she was living with her former medical first responder course instructor, Chris Swanson, and his kind wife. As Jen explained it, Chris had taken a shine to her while teaching a course at her college and had brought her home for keeps. Like a puppy.

Valerie and the group were used to hearing from Chris. Whenever Jen was hospitalized—and this coma wasn't her first—Chris blogged and texted from Jen's accounts on her behalf. Valerie thought it was a little weird that a grown man (a medical first responder, no less) didn't appear to carry his own cell phone. Still, she didn't think to question him about it. Who would?

So while the two young leukemia patients languished in twin Midwestern comas, Valerie and her friends split their precious time and tenuous energy between their own treatment schedules and checking up on the health status of their hospitalized friends.

Then, in June, after posting another encouraging message to Kate's Facebook page, Valerie noticed a chilling detail about Jen's account: There were absolutely no "get well" messages posted anywhere.

On a sickening hunch, Valerie called every hospital in and around Jen's hometown of Ann Arbor to see if they had a patient registered under her name. None did.

"I was so mad, I couldn't breathe," Valerie recalls. "I saw stars—rage stars. How could this be happening again?"

Since Munchausen syndrome by internet isn't in the DSM-IV, the best way to detect it is to know the signs, says Dr. Feldman.

Like other forms of the disorder, Feldman explains that Munchausen by internet usually manifests in the late teens or early 20s. It's often preempted or accompanied by other psychological issues, most commonly personality disorders. And it predominantly affects women. "I'm not clear on all the reasons for that, but it's a pretty consistent finding," Feldman explains. "And many of them have medical or nursing training... Their fascination with medical issues is expressed in their career choices."

The lies escalate slowly, which makes them harder to detect. Someone might sound like a walking textbook when talking about their symptoms, or they may be quick to duplicate the symptoms of other people around them. The lies are intricate, detailed, engrossing. Terrible setbacks are followed by miraculous recoveries. And if someone else becomes the center of attention, their condition will dramatically worsen or they will become the victim of a sudden tragic event.

"A death in the family is common," Feldman adds. "They're usually gruesome deaths or multiple deaths—like a motor accident that kills the entire family. Either that or they're surprisingly vivid, like someone describing a decapitation in vivid detail."

Some people even invent tertiary characters—friends, siblings, a concerned mother—to jump into internet threads and corroborate their stories.

The lies slowly escalate, pile up, and create an improbable whole. Then one day, you realize you're friends with a 15-year-old chronic migraine sufferer online who also happens to be a fourth-year medical school student who plays drums in a band at night—despite those crippling migraines—to pay his med school tuition because his deaf mother and alcoholic stepfather have no interest in his baby-genius education. Oh, and since he's not yet old enough to drive, he skateboards three miles a day to get to class.

And on that day, you feel like a total schmuck.

This schmucky feeling is a byproduct of the internet. Our natural bullshit detectors are muted online; we can't rely on facial expressions and other physical cues for sensing lies, and studies suggest that without those cues, we're prone to generously fill in the blanks.

"People fill in the missing pieces in the picture of others they meet online, not fully aware that the picture they are forming is based partly on their own unconscious desires regarding who they want that person to be and how they want them to act," explains an August 2012 study of the disease titled "Munchausen by Internet: Current Research and Future Directions," conducted by Bournemouth University's School of Health and Social Care in the United Kingdom. "This occurs at the same time as the person is taking advantage of the anonymity inherent in text-only communications to present their best possible face."

Even lacking any medical experience, the internet makes it simple enough for people to become experts on any illness or injury—if not enough to fool a doctor, at least savvy enough to fool other people online. A survey by the Pew Research Center published in 2011 found that 8 in 10 people use the internet to access health information, making it the third most popular online activity (after checking e-mail and using search engines). The Pew survey also found that 65 percent of adults who used the internet for health research reported suffering from a medical crisis in the past six months, which helps explain the internet's robust niche of medical support groups.

"What we're seeing is people spending just 15 minutes researching an illness on Wikipedia and then jumping from support group to support group online," Feldman says.

Think of it: You're anonymous—you can manifest any symptoms you want, like puking pints of blood, without having to actually puke pints of blood. And instead of being examined by the trained eyes of a doctor, you're welcomed unconditionally by flocks of people who stand on-call, ready to shower you with attention and emotional support 24 hours a day. For weeks or months or years, you can live out your deception without the fear of having your lies challenged in person. And if someone does eventually doubt your story, you can simply log out. Change your name or your illness. Find a fresh group of sympathizers.

This accessibility makes Munchausen by internet "way, way more common than Munchausen ever was or could have been," Dr. Feldman says. "Unfortunately, a lot of therapists have no clue what Munchausen is, let alone Munchausen by internet."

Which is dangerous, not only for the sufferers who feed their very real psychological illnesses online, but for the people they prey on. People who seek virtual companionship because their immune systems are truly shot, their days are truly numbered, and they're desperate to pour their trust, love, and dwindling energy into the few people out there—people they can't otherwise reach—who know exactly what they're going through. It's these people, who are already battling the betrayal of their bodies, whose worlds have essentially been reduced to bedrooms and hospital rooms, that Munchausen by internet hurts the most.

Valerie felt stupid for being duped by Jen, another young woman faking cancer. But more importantly, she was pissed—imbued with a rage not even chemo could mute, a rage that burned brighter than 10,000 floating boob candles. But before confronting Jen, Valerie took an important step: She tracked down Chris Swanson and called him.

It turns out that at least part of Jen's story was real—Chris Swanson does exist. In fact, he's Captain Chris Swanson of the Genesee County Sheriff's Office, a handsome 39-year-old with a heroic jaw line and friendly Midwestern drawl. (It might seem weird that, of all the players in this complicated story, Captain Swanson is the only person to not request a pseudonym. He assures me that he is proud of his work and happy to speak on the record.)

"I would characterize her as outgoing," Captain Swanson says when I call him. He remembers Jen from his medical first responder course. "She always sat in the front of the class, middle row." He says she'd often stay after class to talk about her rough life—how she lived alone, how both her parents were dead, how she was fighting cancer. "With her, there was always a new dramatic, horrific story." He could tell that most of her stories were "probably not legit. I'm a cop."

While he was polite to her, Captain Swanson tells me that he never invited her to come live with his family. In truth, he hasn't seen her since her class ended. After Valerie alerted Captain Swanson that Jen was claiming to live with him, he immediately alerted the university about Jen's claims. "I wanted to document that I made the school aware of what was going on," he says. "She wasn't at all threatening, but you never know what people can do online, the venom they can spew. I've been teaching since 1997; I'm cautious around my students."

Within moments of getting off the phone with Captain Swanson, Valerie sent the allegedly comatose Jen a text: "I just got off the phone with Chris Swanson. You and I need to talk about the future of your blog. Call me now."

Instead, Jen immediately defriended her and the other women in her support group on Facebook. She then blocked them from her Tumblr blog. The changes came within seconds of her text, Valerie recalls, "before I'd told anyone else what I'd learned."

Robbed of the emotional gratification of confronting a woman who'd spent half a year scamming sympathy from cancer patients, Valerie was then forced to out Jen to their support group. "I can't express to you how horrible it was to have to confess someone else's lies," she says.

In fact, it caused her to quit the internet.

Valerie figured she still had one boob to lose and a war to win. She couldn't waste any more time on virtual predators and their pretend illnesses.

And so without fanfare, Valerie shut down her Tumblr blog in June 2011.

Within weeks, internet friends were contacting her, some with concern, others with suspicion. They wanted to know how her treatment was going; they wanted proof that her treatment was real. "In my absence, Jen went on a tirade trying to convince people on Tumblr that I was faking cancer," Valerie says. Her solitary troll multiplied into an army. Some accused her of faking cancer, while others gleefully wished she'd die from it, soon.

About a month after shutting her blog down, she relaunched CatsNotCancer.

"I brought my blog back with the sole purpose of setting the record straight," Valerie says. "I went ahead and outed the holy shit out of Jen to the whole world."

Or at very least, the whole internet.

"Munchausen by Internet," the Bournemouth University study published in the Journal of Medical Internet Research, hypothesizes that many Munchausen by internet sufferers are motivated by one of two dominant personality traits: narcissism or sadism. Narcissists don't form online relationships to build interpersonal intimacy; they do it for the audience or to appear popular and successful. When confronted about their deceptions, narcissists are prone to cut their losses and shut down their blog or leave their support group, only to replant elsewhere under a new handle. Sadists, however, "actively seek to disrupt and cause problems for their own satisfaction or enjoyment," the study says. When confronted about their deceptions, these people fight back, and they fight dirty. For this reason, the study notes, they're often lumped into the same category as internet trolls.

To some extent, the label fits. Even Luddites know that internet trolls are those anonymous assholes who deface blogs, news articles, YouTube videos, even tribute pages to dead children by ceremoniously calling someone fat or a fag or whatever. Anything to prompt readers to froth at the mouth. Trolls are a normal byproduct of online socialization—as ubiquitous as cat videos and cash-poor Nigerian princes. The only way to deal with them is to ignore them. Do not feed the troll (DNFTT), as the saying goes.

But there's an important difference between standard internet trolls and a Munchausen by internet troll: the setting in which they operate.

Because unlike standard trolls, Munchausen by internet trolls infiltrate the "open trusting environments of communication forums—established for the sole purpose of giving support to members facing significant health or psychological problems," the study says. It's easy, given the trusting, intimate nature of support groups. They prey on those who are physically sick and, by proxy, emotionally vulnerable. By the time they're discovered, they know their victims quite well. And when their duplicity is unmasked and that attentive support stops, they attack.

"You think that everyone cares about your journey and your bald little head. no one cares. they just want to watch you die."

Valerie's Flickr page, where she photo-documented her cancer journey, and which is now littered with vitriolic comments like the one above, eventually satisfied most of her online critics that she was being treated for cancer IRL (in real life). In them, Valerie resembled a fresh-plucked chicken, minus the breast. But for those who might still have doubts: I've met Valerie. Her hair is a short, red, curly mop, and the pallor of her skin advertises her recent fight with cancer more loudly than her flat chest.

Valerie was disgusted that she had to submit proof to strangers of her suffering, but as she prepped for her second mastectomy that summer, she blogged to stay vigilant. Jen was still active on cancer sites and had popped up in other support circles. Every time she did so, Valerie made it her mission to inform the group of her lies.

Valerie discovered Munchausen by internet after harnessing the power of internet search engines to research "crazy bitches who fake cancer." So she blogged about that, too.

Which is how she met Alex in July 2011. The 19-year-old Texan reblogged Valerie's post about Munchausen by internet, then followed it up with a friendly e-mail. "I just stumbled upon your blog and just want to say, you're incredible," she wrote. Valerie didn't respond. She figured she'd had enough internet friendships.

But Alex was persistent. She uploaded a YouTube video to her blog titled "Dear Valerie." The video depicts a bald girl with a cap pulled down to her doughy cheeks. She looks like any other young white teenager, minus eyebrows. Alex doesn't say much in the five-minute video. The girl stutters as she talks. She's racked by seizures. She flatters Valerie a little, then asks after her boyfriend and mentions Valerie's remaining breast by its Christian name: "I'm thinking of you a lot, lately—you and Hazel and your cats."

Still, Valerie was hesitant to accept Alex's overtures of friendship because her narrative was suspicious: Alex presented herself as a young, partially deaf woman suffering from terminal cancer, which was a byproduct of her status as an AIDS patient. On her blog, she explained that she was infected with HIV as a child after being raped by her uncle. She lived with her vaguely sadistic mother—a woman who allegedly discussed gassing her daughter's pet cat the moment Alex died. But unlike the fakers Valerie had encountered online, Alex had photographs of herself hooked up to catheters, chemo ports, and oxygen machines to back up her claims. She also had friends—"real" friends, not internet ones—who vouched for her terminal status, including one named Gabby.

"I visited her in Texas twice in about a year," Gabby recalls. Gabby's a 24-year-old Midwesterner who suffers from fibromyalgia. She met both Alex and Valerie online. "I pushed around her wheelchair and carried around her oxygen tank, which was heavy as heck."

And here this young, dying girl was, pleading for Valerie's friendship.

"My partner and I are never going to have children. I love children, and here's a girl making the full-court press of friendship with me," Valerie remembers. "I couldn't ignore what I thought were the pleas of a dying child."

Within weeks, the two were talking, e-mailing, Skyping, and texting on a daily basis. Valerie Skyped with Alex from her hospital bed on August 30, 2011, within hours of undergoing her second mastectomy. Valerie promised the girl that if Alex died, she'd adopt Buddy the cat, so Alex's mother couldn't euthanize him. She sent the girl more than a hundred dollars' worth of gifts that she bought off of Alex's Amazon.com wish list. Valerie's boyfriend also routinely Skyped with Alex, as did Valerie's mother. In fact, Alex called Valerie's mom "grandma."

While Valerie's relationship with Alex bloomed, so did her health. Her second mastectomy healed beautifully, and her hair was coming in, giving her a flaming pageboy look. Her cheeks gradually shed their corpselike pallor; muscle tissue strengthened her atrophied limbs; she could hold down food again. And she spent less time online, which translated to less attention on Alex as Valerie worked to reclaim her "normal" life. But while Valerie's health had improved, Alex's health and moods had plummeted. She'd recently confessed to being suicidal.

For the first time in a year, Valerie could venture out into public and be seen as someone other than a cancer patient caught mid-waltz with Death. What better way to celebrate that important milestone than by dressing up as the walking dead and attending a zombie-themed convention in Seattle? That's just what Valerie did. She even invited her fellow nerd-in-arms, Gabby, the friend of Alex's who had vouched for Alex's illness, to fly into town and join her. The pair agreed not to tell Alex about the convention or even Gabby's visit, to spare Alex's feelings.

On October 22, 2011, Valerie and Gabby arrived at the Seattle Center dressed as Beetlejuice and Lydia. This is what happened next:

"I got a phone call from someone claiming to be Alex's mother," Valerie remembers. "She told me Alex was comatose in a hospital but had awoken long enough to call my name." The call threw Valerie off. Although the call's phone number was unfamiliar, she could've sworn on a stack of Bibles that she was talking to Alex, just based on the sound of the voice on the phone. So Valerie turned and asked Gabby if Alex's mother sounded like Alex. Gabby, who'd met the woman several times, said "No."

"And I said, 'Gabby, I think we have a problem here.'"

The women immediately called Alex's IRL best friend in Texas. This best friend revealed that she'd recently accused Alex of faking cancer, faking AIDS, even faking seizures and hearing loss to thousands of people online and in her personal life. (According to a later police report, Alex's victims included the Olympia-area musician Kimya Dawson, who "spent $562.95 at Amazon to send numerous gifts, etc. to her.")

Valerie then called Alex's local police department and asked them to do a welfare check on the girl. Their response was devastating. When questioned by police, "[Alex] stated that she had lied to all her friends and everyone she knows and convinced them that she was dying," the police report states. "Mother stated that her daughter has a disorder and they are working on it."

Even a year later, Gabby can't hold back her tears when speaking about Alex's deception. "Last year, I found out my grandfather had an inoperable tumor in his stomach," Gabby says. "I wrote about it on my blog." Shortly after that post, Alex wrote on her blog that the reason she'd been throwing up continually was because she had an inoperable tumor in her stomach. "Then she asked me to come visit her," Gabby remembers. "My brother, my mom, my uncle, they all went to see my grandfather in hospice. I was faced with the choice of going to see my friend—who for all I knew was dying alone—or going to see my grandfather, who I knew was surrounded by family. So I chose to drive all the way to Texas. I went to take care of her. I did what I thought was right."

Gabby's grandfather passed away weeks later. "I never got the chance to say good-bye to my grandfather," Gabby says. "She knew my grandfather was dying, and she begged me to see her instead."

"New cases of Munchausen by Internet are identified regularly," write the authors of "Munchausen by Internet," but diagnosing it can be tricky given that there's no known way to prevent Munchausen from manifesting in any of its forms, and Munchausen by internet isn't even recognized in the DSM-IV.

That hasn't stopped people like Valerie from launching online crusades to out these pathological fakers. One blog, called the Warrior Eli Hoax Group, was launched last Mother's Day to untangle a complicated nest of lies involving a fictional child with cancer named Eli and his entirely fictional family. Since then, blogger Taryn Harper Wright has investigated a number of online hoaxes forwarded to her by suspicious readers and victims. Wright's blog now gets roughly 2,500 hits a day.

Meanwhile, this body of researchers is lobbying to make Munchausen by internet a recognized psychiatric disorder, which will help psychologists identify and treat patients. The authors of "Munchausen by Internet" "propose that Munchausen by Internet and Munchausen by Internet trolling should be formally acknowledged in a revised version of the Diagnostic and Statistical Manual DSM-5." They argue that updating the DSM, the fifth edition of which is due out in May 2013, would help benefit victims like Valerie by "effectively identifying and minimizing the growth of this behavior as more people seek reassurance and support about their health in an online environment."

Like the other forms of Munchausen syndrome, Dr. Feldman says there are no magical pills to treat the disorder—just intense, dedicated sessions of psychotherapy.

Alex is surprisingly candid about her deceptions when I call to get her side of the story. She's upbeat, even laughing at herself as she tells me about her overpowering compulsion to be liked, to be the center of attention, to lie.

"I'm just full of bullshit and I have been since I was 4," she says, recalling her first lie: "I told my mom I had kiwi at preschool for a snack. Had I ever eaten kiwi in my entire life? No. But I told her in great detail all about the kiwi, how it was hairy on the outside and green on the inside. I don't know where I got these details."

As I'd been warned, she is incredibly charming and her bluntness is ingratiating. At one point, she interrupts our conversation to point out how the cadence of her voice has subtly changed to match my own—she's a Texas girl with a disappearing drawl. It feels as if she's trying to prove something, as if copping to the chameleon-like habit proves that she's now an honest woman. I like her. She strikes me as a woman who could sell autographed Bibles to a used-car dealer.

Alex essentially admits that lying has ruined everything good in her life. Her lies have alienated her from her church—she once swore her mother was pregnant with a Christmas miracle baby, despite having her tubes tied. They've cost her friends and gotten her kicked out of her college dorm, which is how she came to be living back at home at the age of 19.

But Alex swears that she didn't start blogging in November 2010 with the intention of lying about cancer, AIDS, and rape, or manipulating her friends into changing her adult diapers (yes, that happened). The deception began with an opaque post here and there. "Oh I'm sick again" posts, as Alex calls them. "No one paid attention until I started full-time illness blogging." So in April 2011, she ordered two wheelchairs, oxygen tanks, face masks, some veterinary IV tubing, and other medical equipment from Amazon.com. She also cut her hair off and told her IRL best friend that she had non-Hodgkin's lymphoma. She reasoned that this would help validate her story.

I ask Alex why her mom went along with the ruse, why she agreed to pose in pictures that featured Alex wearing an oxygen mask or languishing in a makeshift hospital bed. "I think after living with a child with mental illness for a really long time, you learn to just not push it," Alex responds. "Whenever she would push it with me or I would get caught in a lie, I became acutely suicidal."

Alex says that the blog eventually became her inspiration—and vehicle—for a melodramatic, drawn-out suicide plot. She planned to kill herself in December 2011. "People were not going to know that I had killed myself, though—they were going to think I had died of natural causes," she explains. Death by fictitious cancer.

I'm not sure I believe her, but it hardly matters: Alex's lies were exposed in late October 2011. I ask if she feels remorse for deceiving basically everyone she's ever met.

"Yes," Alex says immediately. She currently limits her internet use and sees a psychotherapist to help her cope with a slew of mental disorders. But Alex admits that even her remorse comes from a very self-involved place. "I'm always the most afraid that people are going to hate me," she says. "People hating me is something that I just can't physically tolerate. It's why whenever I get caught in a lie, I immediately become suicidal and just feel the need to die. Like I can't live with it."

That's what Alex says happened last fall, after her friends outed her lies to her 1,500 internet followers and real-life friends, and the hate mail began. "I took the yellow-belly approach. I sent out a text that said, 'I know what I did was terrible.' People didn't respond to it well. I was publicly mocked." Then she spun into a self-destructive cycle of what she describes as "passively suicidal" binge-drinking.

But instead of dying, the 19-year-old wound up pregnant.

That November, Valerie filed charges against Alex for wire fraud, as much out of spite as the vain hope of recouping money for the stuffed animals, clothes, and other Amazon.com gifts she'd sent the "dying" teen. She also continued blogging about her cancer recovery as a way of putting the whole ordeal behind her. It worked, for the most part. She didn't hear the name "Alex" again for nearly a year. Then, on August 10 of this year, an anonymous note landed in her inbox:

Subject: Alex

Message: Hi Valerie, I don't know if you've heard, but Alex had a baby.... I'm very concerned... about the child. I don't know why because she hasn't shown that she would ever hurt a child, but she seems a little unstable... and that is a little scary. I don't know what needs to be done, but I'm sure you have a better idea of how fit she is to be a mother than I do.

Attached to the e-mail were photographs of a beaming Alex cuddling a newborn. Valerie immediately had visions of Alex ramming a tube up the baby's nose for attention. In fact, she even suspected that Alex had sent the pics herself, if only to taunt her with images of something she could never have: a baby.

"It was a kick in the gut," says Valerie. "Whoever sent it pretty much knew how to hurt me."

In response, Valerie called Child Protective Services and reported the new mother, as did other internet bloggers once she spread the word that Alex had given birth.

Then, when she checked the sender's e-mail address against her Tumblr and Flickr accounts, Valerie realized the e-mail was sent from a familiar source: It was the same anonymous troll who'd taunted her for years—the one who called her "Voldemort" and talked about wanting to watch her die.

Which meant the sender couldn't be Alex because the troll predated her by half a year.

Valerie contacted Taryn Harper Wright from the Warrior Eli blog to help her track down and unmask the troll, once and for all. When Wright began writing about the saga, the troll popped up in the comments section. Using the sender's IP address, the pair were able to track years' worth of harassing messages back to a surprising source: Beth, the teenager who first claimed she'd been subjected to Christmas rape by her uncle and who went "totally apeshit" when Valerie stopped communicating with her.

"I was floored," Valerie says. "Our relationship only lasted a few weeks. I hadn't spoken with her in years. Why would she keep following me? Why would she want to hurt me like that?"

I call Beth to ask her. Unlike Alex's cheery (albeit fair-weather) Southern drawl, Beth's voice is soft and high-pitched. It sounds like it belongs to a girl much younger than her 21 years. During our phone conversation, she admits that she sent Valerie the e-mail about Alex's baby but insists that it was because she was "concerned," not vindictive. You see, Beth had tracked Valerie for years online and, once Valerie outed Alex as a fraud, Beth befriended Alex on Facebook.

She says she contacted Valerie after seeing a picture on Alex's account of Alex holding a baby with a feeding tube. "I thought, 'Oh my gosh.' It freaked me out." (Alex admits that she posed with a picture of a lifelike doll with a feeding tube months prior. "I think it was just another way to get attention and be noticed," she says.)

I ask Beth why she faked lymphoma. She says she did it out of boredom and only once, with Valerie. I ask her about the rape, and she says she doesn't want to talk about it. I ask Beth about sending harassing messages to Valerie over the years—messages about wanting to watch her die, messages that were all sent from the same e-mail address that I used to contact her. Beth freezes up and claims to not remember sending the notes. It seems obvious to me that she's lying. It's written right there, in her voice: "I don't think... I might... I think I might have, once, in the very beginning, sent her a mean note. Yeah, I guess."

I ask her if she regrets her lies. "I realize it was the totally wrong thing to do in that context," she replies. "I do feel bad, and I'm trying to do better things with my time—productive, healthy, good things."

I ask her if she's in therapy. "Yes."

Is it working? "I don't know," she says. "I mean, I guess."

In another part of the country—a distance that is rendered moot online—Alex has started blogging again, this time about motherhood. Her watchdog critics are enraged. They question her right to blog, her very right to exist on the internet after so many lies. (Although, if lying were illegal, the internet would have a population of 10.)

Alex addressed her critics in a November 1 blog post:

Yes, I'm blogging and making friends again. But I'm not lying this time... I'm not making dramatic posts, not spinning webs, just reblogging quotes, interacting with people my age, and being a college student as well as a mother. I'm able to interact with people in a normal way for once in my life and it's refreshing....

I know that I am not the victim in the drama I caused, that mental illness does not excuse what I did, and that I was indeed the bad guy. I've actually started to forgive myself, and have to work to not do it again.

But Valerie finds it difficult to believe Alex, and even harder to forgive her.

"I hate her," she says. "There's a part of me that hates me for hating her, but there are absolutely no repercussions for Alex and the other people out here doing this, and the devastation she caused... There's simply no excuse for repeatedly, deliberately causing harm to other people. And I absolutely think she's capable of doing it again."

Valerie's red hair is coming back as slowly and surely as her health, but she must remind herself to eat because, as a side effect of chemo, her brain no longer tells her when she's hungry. Her teeth have also been weakened by chemo, and doctors say it's even subtly changed the shape of her eyes. Valerie hasn't been cleared to ride her bike again—that will take months of physical therapy, she says—but she jokes about battling less drag when riding, thanks to her double mastectomy.

And even though she's still undergoing targeted chemo treatment and will routinely see an oncologist for the rest of her life, she's shut down her blog for good. "You assume when you start treatment, that it'll be over," she says. "But when you've had cancer, it's never over. It follows you for the rest of your life. I can't control that, but I can at least control the impact these women have on my life—and that's what I intend to do. I intend to lead a happy, full, healthy life."

Her CatsNotCancer page now simply reads "Please... GO AWAY." recommended

This article has been updated since its original publication.

 

Comments (115) RSS

Oldest First Unregistered On Registered On Add a comment
1
omg this makes me want to smash my computer to bits. people are so seriously disturbed. this enrages and sickens me beyond belief.
Posted by xina on November 21, 2012 at 9:51 AM · Report this
ScienceNerd 2
This was extremely interesting, thank you. It also explains why my sister was turned away from an online support group she tried to join when she was diagnosed with a disease not normally seen in people 50 years older than her. She told me they said they didn't believe her, and I was so sad for her. I thought that they were so horrible, I guess they were just protecting themselves from something that really does happen.
Posted by ScienceNerd http://stanichium.tumblr.com/ on November 21, 2012 at 1:01 PM · Report this
ScienceNerd 3
I mean a disease that isn't usually diagnosed until a person is 50 years older than her...
Posted by ScienceNerd http://stanichium.tumblr.com/ on November 21, 2012 at 1:05 PM · Report this
4
First and most important of all, best wishes Valerie.

I'm struggling to find the proper words for this other than, that's really, really messed up. The sick minds who cling to these falsehoods for their own selfish reasons have no idea the harm they're causing; and I doubt they would even care.

Blogging my experience with cancer quite possibly saved me mentally and emotionally while I was going through chemo. It was my support system.

So much happens not only to your body but also your mind. Not just the coping with what you're going through and mortality itself, but the chemo drugs seriously mess with you mentally (search on “chemo brain”).

Having to deal with any extraneous bullshit just adds on top of an already extremely difficult situation. To have your mind fucked with like that... I'm at a loss for words...

guh.
Posted by slnk on November 21, 2012 at 1:23 PM · Report this
5
A very well done piece. Excellent job.
Posted by Hannah in Portland on November 21, 2012 at 1:27 PM · Report this
alithea 6
when someone manages to pull the wool over your eyes in such a deep way (which is easy to do when they have sociopathic tendencies -- they have the ability to make you believe that they shit gold. "of COURSE you shit gold!"), the after-effects can make you feel deeply shamed. and for a lot of people, shame = silence. of course, staying silent is a way of letting them have power still, and speaking out and telling this story is brave and awesome.
Posted by alithea on November 21, 2012 at 1:56 PM · Report this
7
This is a really excellent article, Cienna. Thank you for delving into it.

Being a cancer survivor is something I don't talk about much exactly because I fear that people who didn't know me then will think I'm lying about it, or bringing it up for sympathy or attention. Despite the fact that it's probably the central defining experience of my life, I'd rather downplay it or keep it a secret than be suspected of that kind of attention-seeking behavior.

Best wishes of increasing health and happiness to Valerie and all her village.
Posted by Thel on November 21, 2012 at 1:58 PM · Report this
8
Most of the crimes we commit against each other are not illegal.
Posted by Ruth Evershed on November 21, 2012 at 2:04 PM · Report this
9
Connecting online around health issues, especially mental health issues is really sketchy. It can be so helpful, but the trolls will beat you down.

Valerie - I wish you health and a long life. So sorry you had to deal with other people's crazy.
Posted by sisyphusgal on November 21, 2012 at 2:08 PM · Report this
dangerousgift 10
This is intriguing and beautiful and terrifying. Thank you for writing such a fluid, well paced article!
Posted by dangerousgift on November 21, 2012 at 2:21 PM · Report this
11
Wow, that was so good I actually forgot I was reading the Stranger.
Posted by pistolkitten on November 21, 2012 at 2:52 PM · Report this
skjaere 12
This is just fascinating in a sort of horrifying way. It reminds me a bit of the Msscribe debacle several years ago in the Harry Potter fandom, only that person made up fake stalkers and fans in order to get attention from well-known people in the fandom.
Posted by skjaere on November 21, 2012 at 2:53 PM · Report this
13
When the internet was young, Armistead Maupin got sucked into an internet Munchausen drama. Later he wrote a fictionalized account of it, "The Night Listener."

Back when my children were young and I frequented mommy discussion boards, I ran across a couple of internet Munchausen liars. The worst was one who supposedly had a heart attack while reading our board, and then posted under other names as her sister-in-law giving updates and as someone supposedly unrelated trying to get everyone to send get well gifts as she was fighting for her life.
Posted by Drunken Housewife http://www.drunkenhousewife.com on November 21, 2012 at 3:35 PM · Report this
Canadian Nurse 14
This is a riveting article. Thanks for it, Cienna.

Valerie, I hope that you continue to heal and grow stronger, away from the negativity of the internet,
Posted by Canadian Nurse on November 21, 2012 at 4:03 PM · Report this
keshmeshi 15
As with people who claim more accomplishments than any normal human could possibly rack up, I tend to be very skeptical of people who claim more tragedies than seemingly any human could bear. A deaf, cancer-ridden, AIDS patient who had been raped as a child? The sheer amount of misfortune should raise red flags for most of us, but maybe that's the problem. A big lie is harder to disbelieve, especially since doing so makes you an asshole
Posted by keshmeshi on November 21, 2012 at 4:12 PM · Report this
16
Wow, Cienna, this is a stunning piece. I really feel a bit unhinged after reading this. And a little less safe.

Well done.

Posted by portland scribe on November 21, 2012 at 4:49 PM · Report this
zivilisierter Wurm 17
My God, it all makes sense now - Fnarf and Will in Seattle are the same person! Pompous academician and ignorant man-child in perfect apposition, they're his two covers.
Posted by zivilisierter Wurm http://peregrinari.tumblr.com/ on November 21, 2012 at 4:51 PM · Report this
dangerousgift 18
@17: ZING!!!!
Posted by dangerousgift on November 21, 2012 at 5:23 PM · Report this
19
Great piece, Cienna, and a great service. Thanks.
Posted by Jan Bultmann on November 21, 2012 at 6:37 PM · Report this
sirkowski 20
Damn.
Posted by sirkowski http://www.missdynamite.com on November 21, 2012 at 7:09 PM · Report this
freesandbags 21
My laptop needs a Silkwood shower. Lots and lots of scrubbing. I was riveted to the end of the article. Bravo and Huzzah to Cienna Madrid.
Posted by freesandbags on November 21, 2012 at 8:35 PM · Report this
22
This was incredible and sad and creepy and a little bit beautiful. Amazing job, Cienna, thank you.
Posted by jack chandelier on November 21, 2012 at 9:03 PM · Report this
23
Frickin' awesome article, from someone who cyber-knows almost all the players in this drama and was internet-present for most of it. Well done.
Posted by chemocapmaker on November 21, 2012 at 9:50 PM · Report this
Sandiai 24
Fantastic reporting.

Posted by Sandiai on November 21, 2012 at 10:31 PM · Report this
25
Really? No one thinking that there's something wrong with everyone in this article?

Don't have enough friends in the real world? Need to blog/post all the time? Calling people friends you have never ever met? Falling for the exact same shit three times?
What did you do with your lives before you got sick?
Get a life. An authentic one.

Sorry for the cancer - all the best! I just doubt that it has anything to do with the underlying problems other than the platform it provided (blogs)...

I can't fight the feeling that this whole article is made-up, or Munchhausen, isn't it?
Posted by puzzled on November 21, 2012 at 11:03 PM · Report this
26
I'm only two pages into this, and I'm already thinking The Stranger's going to get another Pulitzer.
Posted by BallardBoy on November 22, 2012 at 2:41 AM · Report this
BonzaiThePenguin 27
Valery was targeted by a sociopath. I say this with 100% certainty because my late brother used to do the EXACT same thing: he would choose a website to hit, then he'd create multiple accounts for trolling, making up stories that elicit pity from everyone, and scamming people. It's all about manipulation, control, and profit.

I HIGHLY suggest updating the article to mention sociopathy by name, and maybe even to ditch the disingenuous references to "The Lying Disease" and Münchausen Syndrome. Sociopathy isn't mysterious or hard to detect once you know what to look for – heck, I saw it coming by the bizarre "inconsiderate" and "Blah, blah, rant over lol :)" references Beth made – they aren't very good at attaching the right emotional words to things. Everything else only further confirmed it.
Posted by BonzaiThePenguin on November 22, 2012 at 4:48 AM · Report this
BonzaiThePenguin 28
Valery was targeted by a sociopath. I say this with 100% certainty because my late brother used to do the EXACT same thing: he would choose a website to hit, then he'd create multiple accounts for trolling, making up stories that elicit pity from everyone, and scamming people. It's all about manipulation, control, and profit.

I HIGHLY suggest updating the article to mention sociopathy by name, and maybe even to ditch the disingenuous references to "The Lying Disease" and Münchausen Syndrome. Sociopathy isn't mysterious or hard to detect once you know what to look for – heck, I saw it coming by the bizarre "inconsiderate" and "Blah, blah, rant over lol :)" references Beth made – they aren't very good at attaching the right emotional words to things. Everything else only further confirmed it.
Posted by BonzaiThePenguin on November 22, 2012 at 4:54 AM · Report this
29
is there any chance the ups and downs of her involvement with the munchhauseners actually helped the real cancer patient?

wondering more about the gender aspect to the syndrome....why does this affect women more?
Posted by Cassette tape fan on November 22, 2012 at 5:06 AM · Report this
30
Amazing article. Let's hope the next DSM considers adding this disorder.
Posted by EStanley on November 22, 2012 at 6:09 AM · Report this
Fistique 31
This phenomenon also reminded me of the spate of middle-aged female authors (RJ Ellory, most famously) who have been outed over the past couple decades for pretending to be young gay men with tragic life stories. Then there's cases like Gay Girl in Damascus, where people pretend to be bravely blogging from dangerous situations to draw attention and praise to themselves and their cause. Related manifestations of sociopathy, maybe?
Posted by Fistique on November 22, 2012 at 6:36 AM · Report this
Canadian Nurse 32
@27: There's a lot of academic debate about ASPD vs Münchausen, not at least in part because mostly men get Dx with sociopathy, while mostly women get the Münchausen diagnosis. Are they the same thing, except with different techniques, or are they different? Too soon to tell.
Posted by Canadian Nurse on November 22, 2012 at 7:37 AM · Report this
BonzaiThePenguin 33
@32: I've never heard of this debate – some Münchausen patients are sociopaths, while some are not. Syndromes only describe a set of symptoms that are shared by multiple underlying causes. However, sociopaths may also create multiple false personas with the intention of taking advantage of vulnerable people.
Posted by BonzaiThePenguin on November 22, 2012 at 8:36 AM · Report this
mtnlion 34
Cienna, I was gripped by this article. You've done an incredible job here.

@27, People with Munchausen need the attention on them--the sympathy, the energy, the concern. They specifically like to look like a beaten-down but valiant sufferer or victim. Psychopaths will manipulate others for whatever reason they wish. They do not want to look like victims unless it helps them to achieve some self-interested "goal." They also don't seem to experience fear in the same way and engage in reckless behavior.

There's lots of crossover between borderline, ASPD, and factitious/Munchausen. But they have their subtle differences, even if it doesn't really matter--very few of them want treatment and if they did, it's rare that it helps at all. Often, therapy just helps them learn how to feign genuine emotion better than ever.
Posted by mtnlion http://radicalish.wordpress.com on November 22, 2012 at 1:35 PM · Report this
rodolfo 35
@32 & @33: Maybe Munchausen's is a form of sociopathy? The narcissism and sadism mentioned in the article are both criteria for diagnosing sociopathy, at least as far as I understand it. And it seems like the people with Munchausens, like sociopaths, also lack empathy - how else could they wreak such havoc with others' lives?

Excellent reporting, Cienna.
Posted by rodolfo on November 22, 2012 at 1:58 PM · Report this
36
Cienna, this was a fantastic article. Thank you!
Posted by Marone on November 23, 2012 at 4:09 AM · Report this
mtnlion 37
Looked over a DSM yesterday. The crucial difference between factitious disorders and malingering (faking either physical or psychological symptoms) is the presence or absence of external reward. Psychopaths will malinger to get themselves out of a punishment. I think that if a psycho/sociopath thought that faking an illness could bring them money, sex, or help them avoid punishment, they'd do so. With factitious, there is no external reward. It's only about assuming the sick role.
Posted by mtnlion http://radicalish.wordpress.com on November 23, 2012 at 9:12 AM · Report this
38
It's all part of a spectrum of attention-seeking, isn't it? Compare it to alcohol use. Some sip socially, and some ruin their livers.
The interwebs is a crazy place. It can step up the addiction bone exponentially. Porn, shopping, trolling.

If attention is the ultimate goal, everyone here is guilty of seeking that, in a small way. Why comment at all if no one will read it? We all crave interaction. Will someone comment on my comment? The difference is what you're willing to say to get a reaction--whether it's just adding your two cents to the conversation, trolling with pointless but irritating comments (like, say, @25), flaming another commentor (and saying things you'd never say to a human being face-to-face) or creating an entire false life just to see what effect you can have. Most of us draw the line well before bat-shit.
Posted by portland scribe on November 23, 2012 at 10:06 AM · Report this
Rotten666 39
Great article!
Posted by Rotten666 on November 23, 2012 at 3:44 PM · Report this
Holmes 40
Blogs as support groups?

I'm wondering if an unstructured venue is really a good place for this function. Support groups are fine. But there have to be rules and mediators to ensure that one or more members don't drag everyone down a black hole of grief and tragedy. And without serious training or experience, I don't think that a sufferer is in a position to evaluate motives of other group members objectively and keep the focus headed in a constructive direction.

I have no direct experience with people recovering from such devastating diseases. But I have pitched in to help friends over things like divorces. And I have observed the existence of 'tragedy addicts' that look for victims to suck down along with them. Its a lifestyle for such people. Whether they manufacture an ailment, exaggerate one or whatever. As one of the 'normal, well adjusted' friends, part of my job is to beat these losers off of my suffering buddies until they get back on their feet.

Posted by Holmes on November 23, 2012 at 7:06 PM · Report this
41
the answer is easy....they are attention seeking morons....like the people who write for the stranger
Posted by PC McHater on November 23, 2012 at 8:14 PM · Report this
doloresdaphne 42
Fascinating (and disturbing & creepy story). So sad that we have this sickness in our society.

I know someone who had a Munchausen by Proxy parent (who poisoned her to make her sick). Now she (the victim) also has an honesty problem.
Posted by doloresdaphne on November 24, 2012 at 5:52 AM · Report this
43
This was disturbing to read, and at the same time I couldn't believe what I was seeing! The world is sometimes a scary place...made up of sick people, with no concern for others. I suffer from a "mental illness", but still don't fathom how people can do this? God help this world!!
Posted by chelle pc on November 24, 2012 at 6:10 AM · Report this
mtnlion 44
@38, you bring up an interesting point. You highlight the precise differentiating quality between normal behavior and pathology (drinking responsibly vs. having no control/it ruining your life). In illness and in life, everything is a spectrum. Wanting human social interaction and attention is natural--needing attention so desperately that you install catheters and IVs into yourself is not.

I do think that regular trolls like 25 do have issues, but aren't full blown bananas. They fling their insecurities at the world through scathing comments which remain conveniently anonymous. They get to fulfill the sad piece of themselves which feels gratified by tearing others down without showing their faces.
Posted by mtnlion http://radicalish.wordpress.com on November 24, 2012 at 8:33 AM · Report this
45
Well written piece, very disturbing concept. I've not read from this site before though.

Lies in general destroy. They break links between people; they complicate, slow or even stop communication; they are, to humanity, worse than what water in a gas tank is to a modern car engine. The proliferation of them damns us as a race to be far less than we could be. As evidenced by this article, they can sometimes even injure or literally kill individuals or entire groups. Ultimately, I say they profit no one, not even the teller.

But I'm saying nothing new, and nothing that will fix the problem.

I believe the only thing that has a chance of fixing the problem is the realization that there is One who sees all truth and knows all lies for what they are. As I don't know all, I am glad it's not my job to go after those who poison our streams of communication. But to those who do, I leave this remark, which I have posted elsewhere before:

No one can wage war and win against the enemy whose ally is truth, for the strongest ally of truth is time itself.

In other words, eventually, all lies - ALL lies - fail. There are zero exceptions.

Ad gloriam Dei.
Posted by Color of Silence on November 24, 2012 at 2:29 PM · Report this
46
I'm not above asking... what is the real name of "Alex?" This piece is fascinating, and I'd love to poke around for more on her.
Posted by butterickpattern@yahoo.com on November 24, 2012 at 10:13 PM · Report this
47
I'm not above asking... does anyone know the real name of "Alex?" This story is fascinating; I'd love to poke around the internet for more about her.
Posted by butterickpattern@yahoo.com on November 24, 2012 at 10:16 PM · Report this
48


These young women in the story seem to want to control the emotions coming their way, and to be exceptional, when their lives are ordinary. They are most certainly just sad, mentally ill women, without a lot of defined self worth. It is awful that people have to take things said on the internet with a grain of salt, and not as totally truthful, but as painful as it is to believe, there are always going to be a certain number of people who simply cannot be trusted, and since the internet is world wide, that number, as small a percentage as it may be, are all going to be able to focus on what brings them the most attention the quickest. This may be faking an illness or disease.

I guess the real answer is to assume that until you get it confirmed in person, people may just be telling stories to get attention, much like the three year old who saw the dragon in his bedroom. It may be a specific mental disorder, or simply the manifestation of one already well known, with only the connectivity of the internet being a new factor.
Posted by redline60 on November 24, 2012 at 10:43 PM · Report this
49
These young women in the story seem to want to control the emotions coming their way, and to be exceptional, when their lives are ordinary. They are most certainly just sad, mentally ill women, without a lot of defined self worth. It is awful that people have to take things said on the internet with a grain of salt, and not as totally truthful, but as painful as it is to believe, there are always going to be a certain number of people who simply cannot be trusted, and since the internet is world wide, that number, as small a percentage as it may be, are all going to be able to focus on what brings them the most attention the quickest. This may be faking an illness or disease.

I guess the real answer is to assume that until you get it confirmed in person, people may just be telling stories to get attention, much like the three year old who saw the dragon in his bedroom. It may be a specific mental disorder, or simply the manifestation of one already well known, with only the connectivity of the internet being a new factor.
Posted by redline60 on November 24, 2012 at 10:47 PM · Report this
50
Sorry about the duplication of the comments, I'm new.
Posted by redline60 on November 24, 2012 at 10:53 PM · Report this
51
My husband died in a car accident when I was 8 months pregnant and also had our 15 month old daughter. I was completely lost. In shock. Out of my mind with grief, with no close friends or family to turn to. In desperation I went to two different grieving sites, hoping for a live chat room in my hour of need. I only found message boards. So I posted and pleaded for a kind word, support, anything to help believe the sun would still rise without my husband. They said I was a fake and chased me away like witches with brooms. Talk about kicking someone while they're down! I thought I was at rock bottom, but they showed me there was another rock bottom ever further down. Six years later, I have survived, with two beautiful smart and healthy children, but a big F U to all the fakers who ruin it for people in desperate need of support. Your games are not a joke.
Posted by asiac on November 25, 2012 at 2:26 AM · Report this
52
My friend Janice Erlbaum wrote a book.........which has a surprise ending involving a teen runaway, that she befriended. It turned out that the girl was a serious case Munchausean. I wouldn't be surprised if this was the same gal. I know there's many. But not many that play their game so broadly. Sorry to spoil the surprise ending for all, but I don't think anyone here was planning on reading it otherwise, if they have they have done so already. So read "Have You Found Her" for an amazing factual story of a girl who called herself "Sam"......not much different than a shortened girl name that becomes a boys name "Alex".....both are completely false names. So we may have a connection here.
Posted by Lama John on November 25, 2012 at 7:10 AM · Report this
53
When I was around 15 I assumed an internet persona and talked a lot about her life as bullied and depressed, sometimes hinting at a past rape, all to get attention. The thing was, the moment I realized that this persona actually had people CARING about her, people who were upset and angry and sad to read about her suffering, and who genuinely suggested ways of supporting and helping her, even going so far as to offer to travel to meet her... well, I was horrified and ashamed by my own behaviour, officially outed myself on that internet forum, and apologized to everyone I had lied to.

I've always known that I have a tendency to fake not feeling well - to a much smaller degree than cancer, but as a way of getting attention nonetheless, and at that point I realized how deceptively easy the internet made it to act in such a way. I guard myself every day even against the smallest of lies, because I know those are what lead to the big ones. Because I don't want to hurt people ever again just because I selfishly crave attention and affection.

It sickens me to see how these people have acted - and towards people who are genuinely ill, at that - and that they don't seem to stop unless called out... and not even then, in some cases. I may have some problems that make it easy for me to lie, but I still have a conscience, and I know that faking for attention is WRONG, and something I actively have to work with so I don't hurt people. But these people... they don't even seem to care. How DARE they? Having a mental disorder might be a reason, but it sure as hell is not an excuse.
Posted by Lysistrata on November 25, 2012 at 6:59 PM · Report this
54
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Posted by johnjulian on November 25, 2012 at 7:22 PM · Report this
55
Valerie seems to be an exceptionally strong and beautiful person and that - beyond all this BS from mentally unstable women - is the best part of this article.
As a Seattle transplant myself with some similar stories, I can only wish her the best. Full remission, continued support and to be back on the Burke Gilman by Spring!
Posted by RainGal on November 25, 2012 at 8:39 PM · Report this
56
This just, it breaks my heart, really.

I remember following some of the people mentioned in this article and I recall when this all started to happen. It was sickening then, and it has the same feel now. I can put the real names to the fake names and I just cannot, and could not ever understand why someone would feel the need to fake cancer.

I do not have cancer, but I have other health issues that I blog about and even those are occasionally questioned by those who follow me. It's sad but it's so hard to trust people. A support system would be lovely but my sanity is more important.

My prayers go out to Valerie. Dear, I do hope that things continue to improve for you. Chin up, sweetheart.
Posted by Cate on November 25, 2012 at 9:47 PM · Report this
57
this is probably a great biz oportunity for a mental health prfessional to make a moderated, verified and subscription based peer support group(s) business online. password protected, logins, etc. have an association of peers who could verify IDs and medical diagnosis - maybe paid interns to do that legwork? create a safe space for people who need to share their experiences etc.

and, btw, is anyone really that surprised by scams, imposters, fakes and frauds on the internet anymore?
Posted by Cassette tape fan on November 25, 2012 at 10:38 PM · Report this
Canadian Nurse 58
@37: That's why Münchausen by internet is so complex. There *is* an external reward. The reward is attention, care and concern from strangers. So, is Münchausen by internet a breed of factitious disorder or closer to ASPD? Still lots of questions.
Posted by Canadian Nurse on November 26, 2012 at 8:08 AM · Report this
59
Wow, Cienna. Really great article. Thanks.
Posted by Jen in Madison on November 26, 2012 at 10:13 AM · Report this
easternstar 60
Fantastic article Cienna! What an intriguing subject. Great job!
Posted by easternstar on November 26, 2012 at 10:33 AM · Report this
61
This kind of behavior has gone on in disabled communities for so long, it's not even a surprise to me anymore. It's only gotten worse with the internet. As the article says, it makes it so easy to do. You have to be constantly on your toes for checking new people for faking when they join your online community. Hell, I'm afraid to join new disabled communities online because I have a bunch of unrelated things that disable me, and that kind of stuff is a tip-off to lying.
Posted by deafgimp on November 26, 2012 at 11:31 AM · Report this
Backyard Bombardier 62
Excellent article, and absolutely spot on in describing how those with this mental illness operate, and the devastation they leave in their wake.

I have first hand experience with this - in person, not online - in a former friend. She had a long history of presenting mysterious medical ailments. The worst symptoms always manifested when she was alone, though her friends were treated to the full descriptions after they picked her up from the doctors office or emergency room (and always at the curb, never inside).

Eventually it boiled down to ovarian cancer - a disease with mysterious and inconsistent symptoms and a high mortality rate. While our friend was in the grips of this disease, my wife was diagnosed with breast cancer, at age 38.

As my wife went through agressive chemotherapy treatments at the same cancer clinic our friend said she attended, we saw more and more in our own direct experience that contradicted what we had been told. It became increasingly apparent that our friend was faking it all, and had been for years.

My wife's cancer spread to her liver. Less than a year after her diagnosis, she died.

Through it all - my wife's diagnosis, treatment, decline, and death - and after, our friend maintained her fiction. Although we had gradually cut her out of our lives after we learned of her lies, she still kept trying to contact us and to seek support in her "illness" from us.

The only reason I can say I don't hate my former friend is that I realize that while she didn't have cancer, she still sick. She had, and has, a mental illness that I believe has blighted her life far more severely than she blighted mine.
Posted by Backyard Bombardier on November 26, 2012 at 11:35 AM · Report this
63
O_O
Posted by margotpolo on November 26, 2012 at 12:22 PM · Report this
scary tyler moore 64
spam on aisle 54!
Posted by scary tyler moore http://pushymcshove.blogspot.com/ on November 26, 2012 at 1:27 PM · Report this
65
I've never been so passionate about an article before to read it in the paper and come online just to comment on it, but I had to for this one.

THANK YOU for this, for the past 4 years I've tried to make sense of what was going on with someone I thought I was close to, and this article put a similar situation of what I went through so elegantly.

While I didn't suffer from a life-threatening condition like Valerie, my college roommate who I lived with for 3 years had Munchausen's. Her various lies over the years: she was in remission from esophageal cancer, her cancer had returned, the cancer was because she had bulimia, she had a brother (that died in both a car accident and from a drug overdose- 10 months apart, as told to two different friends, she had gotten in to Harvard, her sister and her husband got in a horrific car accident, her father got in a horrific car accident and it goes on and on and on an on. As the article mentioned about those with Munchausen's being obsessed with the medical system, she just started nursing school in September.

I've struggled for years to express my anger and deep, deep resentment I feel for this woman, and this article gave me so much reassurance that I'm not alone in being devastated by people like this. I try to explain to friends how hurt I was, but unless you are directly affected by someone with Munchausen's, it's hard to understand.

Again, THANK YOU, this article is so incredibly meaningful to me.
Posted by kcul on November 26, 2012 at 5:51 PM · Report this
66
What an incredible article. Pass on my best to Valerie please. I will definitely be reading more articles by Cienna.
Posted by lynz911 on November 26, 2012 at 9:04 PM · Report this
67
I wish I could hug Valerie...I've dealt with some messed up shit on the internet, but nothing like this. It's horrible that she had to take her blog down. I would have liked to have read it.

Valerie...if you ever read this...I hope you realize that your story matters.
Posted by SickRose on November 27, 2012 at 6:16 AM · Report this
Fenrox 68
In related news, I just finished Person 4 The Golden
Posted by Fenrox on November 27, 2012 at 8:27 AM · Report this
69
@25: Really? People go to internet support groups when their friends aren't really up to the task, usually because they don't know what to say.

This is a really sad illness, but I think it's kind of an outgrowth of teenage/young adult tendencies in general. When I was a teenager, I lied about things all the time- never huge things like a terminal illness, but little things- claiming I'd had ex-boyfriends when I hadn't, claiming I'd been in more fights than I had been, things like that. As someone said above, it was a function of wishing my "boring" life was more exciting than it was. I was both an insecure teenager and very depressed. Essentially, I was under the impression that my real experience wasn't good enough to admit to people, so I had to embellish it to make it interesting enough to talk about.

This is merely speculation, but I wonder if I would've been okay with faking illness if I hadn't actually dealt with a lot of death already. I find lying about terminal illness horrifying, but I wonder about people who haven't been close to it and have only really experienced it as something dramatized in fiction.

Maybe some of these people are sociopaths, but I can't help thinking that they might be people with incredibly serious insecurity. Beth seemed like the former, while Alex seemed more like the latter- every time she was caught in a lie, she'd get suicidal? Sounds to me like she thought a life in which no one thought she was extraordinary wasn't worth living. Maybe she'll grow out of that.
Posted by alguna_rubia on November 27, 2012 at 2:05 PM · Report this
70
Amazing article - bravo!

As a cancer surv-just kidding...I've been lucky enough not to have to fight for my life yet. While I personally highly value/appreciate stoicism and humility, it saddens me that those who HAVE can be made to feel an extra burden of wariness and even guilt if they dare to discuss their own very real problems.

I empathize with those who have mental issues as well and would just try to urge them to "do no harm". We all have some burdens...let's just try to keep them from crushing each other, eh?
Posted by FeatheredSun on November 27, 2012 at 5:38 PM · Report this
mtnlion 71
@58, it's not that a person with factitious disorder couldn't also meet the criteria for ASPD, but I think it's unlikely. Psychopaths usually wind up in jail, dead, or are wildly successful. This is thanks to their fearlessness and willing to manipulate anyone to get what they want, without remorse. And by "external reward," I mean something tangible. Like, we all want money, sex, and power, but a psychopath will do whatever it takes--even destroy lives--to get it. Most people don't want others to be worrisome over them or to care for them 24/7 the way someone with a factitious disorder does.

Also, that whole thing where they are ashamed of getting caught in a lie? Not so in ASPD. For them it's "well, everyone's out for themselves anyway," or some superficial rationalization of their lies. Also, the "can't-stand-if-people-hate-me" attitude is a sign of a fragile, maladjusted person with factitious. Someone with ASPD doesn't give a shit who likes them, only that others give them what they want. A psychopath won't get suicidal if people reject them. I think they're largely different disorders that manifest themselves for different reasons.

I've gotten so wrapped up in the psychology of this all that I haven't yet to say that I wish Valerie a full recovery and a beautiful life. She is a strong person, and should be proud to tell this story which very much needed to be exposed.
Posted by mtnlion http://radicalish.wordpress.com on November 27, 2012 at 7:53 PM · Report this
srslywut 72
Floored. Incredible article, Cienna.
Posted by srslywut on November 28, 2012 at 12:47 AM · Report this
73
As the victim of a fabricated, nearly fatal car crash involving a moose, I want to thank for you opening my eyes to the damage liars can cause. Thank you.
Posted by Dwell Taylor on November 28, 2012 at 12:06 PM · Report this
74
Relax guys.
All these "Syndromes" are simply aspects of the human being, part of what we are.
Everyone is made up of them.
It is only when one of these aspects begins to control our lives that it becomes a "syndrome".

In order to survive, life will try every possible permutation (You,yourself, are the result of only one of life's uncountable attempts to survive.) so some people will be on the extremes and some will be so normal (and so seek to be that they will drive a grey car on a grey road on a grey day and still not put on their lights) because they don't want to be noticed.
All these new "syndromes" are simply people noticing another facet of the diamond that each and every person is.
It's all about through which facet YOU choose to look at them, their life, what choices they were offered and what choices they made.
Posted by Frenchfarmer on November 28, 2012 at 2:30 PM · Report this
75
I just want to remind people that this is not confined to the internet. Been there, done that. One of the things I noted - looking back on it, was that she burned through friends. She would find someone that would believe her, and help her with everything, then when that person figured out she was lying and stop listening she would just find another friend to take care of her.
Posted by Bast on November 28, 2012 at 3:21 PM · Report this
76
I would like to point out that, as a cancer survivor and (obviously) a former cancer patient, I was able to live a life mostly uninterrupted by my treatment. I stayed in school full-time, lived in a dorm apartment, and had my infusions outpatient. I was a bald, but otherwise functional and indistinguishable-from-normal student. These liars scare and hurt me for many reasons, but to judge whether a person is "sick and telling the truth" or "healthy and lying" based on their appearance or their ability to participate in everyday life is discriminatory against people with invisible illnesses. Many disabilities and serious, chronic illnesses have no visible signs and symptoms. Please, please do not judge, harass, or condemn people based solely on what you believe a "sick person" should look like. Get to know people and their struggles before you pass judgment.
Posted by sickcollegestudent on November 28, 2012 at 10:26 PM · Report this
77
http://www.sociopathworld.com/

check this out for some insight... written by a sociopath.
Posted by durer on November 29, 2012 at 6:52 AM · Report this
78
fascinating writeup. I've heard of people faking illness on the internet before but the fact this one actual cancer survivor kept running into--and being run over by--fakers, it was like watching a train wreck in slo mo.

Also if people are interested in more internet liar/fakers of epic proportions, just google "Amy Player" and be prepared to make popcorn. There's a classic.
Posted by craniest on November 29, 2012 at 9:14 AM · Report this
McBomber 79
Great article, Cienna. Well-researched, well-balanced and well-put-together. The topic has since sparked some lively and intriguing conversations with friends (which, in my opinion is a reflection of a fantastic piece.) Please keep it up!
Posted by McBomber on November 29, 2012 at 8:42 PM · Report this
80
Reminds me of Gina "Gigi" Silva, the knitter who faked her own death on the internet... only to "come back to life" a year or so later as a beauty blogger named "Georgiana Grey". Gross.
Posted by Notta Mused on November 30, 2012 at 7:15 PM · Report this
81
@57 - the problem with that idea is that illness support boards become overrun with people who have/claim to have functional somatic disorders like "fibromyalgia", "chronic Lyme", "chronic fatigue syndrome".

They self diagnose, or get doctors to diagnose them, which is easy because there are no tests that can prove or disprove it. Diagnosis is made purely on the basis of invisible symptoms described by someone whose blood tests and scans show nothing but an absence of physical evidence. The "diagnosis" for fibro is to push on someone's body in certain places (helpfully mapped everywhere online!) with enough force to blanch the thumbnails (try it on yourself. Hurts, no?). If they express that it hurts, then they are diagnosed.

So you'd be paying interns who'd have nothing to check but whether someone either had clean tests and was faking, or had clean tests and "suffered from" fibromyalgia/chronic lyme/CFS etc.

Every disability support group essentially gets swamped with their pity parties. "But You Don't Look Sick" was an amazing support for people with invisible chronic (often potentially fatal) illnesses like Lupus, Multiple Sclerosis, AVM, Chiari Malformation, Crohns, Coeliac Disease, IIH, diabetes, Epilepsy, Sickle Cell Anaemia, etc.

Now? It's the world's biggest functional somatic disorder cry-in. It's useless if you suffer one of the problems I listed, because (as with every other online support group) even if you post in the forum specific to your illness, an FSDer or 40 will pop up and say "OMG I have that symptom, should I get tested for that?", often adding it to the looong list of "diagnoses" in their forum signature anyway. Or, they hog threads with things like "Well I don't have cancer/MS/HIV/Lupus but I know exactly how you feel" or "I wish I had [potentially fatal disease], it would be better than what I've got".

If you ignore them? They "die", or their "mother" posts saying they're in a fibro-coma or something.

It's like playing Whack a Mole. Most of us give up, suffering quietly, not wanting to post about our struggles in case someone lifts our words and claims them as their own, for sympathy.

Nowhere is safe. Fakers and FSDers are like bedbugs. Everywhere, unkillable, irritating and parasitic.
More...
Posted by PizzaCat on December 1, 2012 at 9:39 AM · Report this
82
mtnlion - thank you for adding your additional thoughts, they helped as much as this article did in making sense of nonsense.
Posted by Fiddles on December 1, 2012 at 10:40 AM · Report this
83
Just so you know, a quick google search finds that "Valerie" is Melissa Nicole "Nikki" Mickey... and "Alex" is some chick named "Cara Goodman."

Nikki/CatsNotCancer seems pretty open to honestly talking about it anyway: http://www.youtube.com/watch?v=N9C046j_f…

I'm being serious when I say "quick" search: I googled "Kimya Dawson fake cancer" and this was one of the first results.

I'm just thinking, if you're really trying to protect their identities, maybe give fewer details...?
Posted by emmyisback on December 2, 2012 at 6:37 PM · Report this
Cienna Madrid 84
@83, As I state in the beginning of this article, because this story takes place online, most of it is public record and thus searchable. I changed the names of many of my interviewees to make them more comfortable. Fictionalizing the details would not only be totally against my rules as a journalist, it would be a pretty heinous thing to do given the nature of the subject: Lying.

But I suppose you've proven your mastery of Google, so congratulations there.

Posted by Cienna Madrid on December 2, 2012 at 8:38 PM · Report this
mtnlion 85
@83, you're the one who broadcast these people's real identities on Slog for all to read. Let's not get confused here.
Posted by mtnlion http://radicalish.wordpress.com on December 3, 2012 at 1:42 PM · Report this
86
This would make a great movie. Such a movie would be a great public service and a potential thriller. Consider it.
Posted by TheSchwartz on December 4, 2012 at 10:25 AM · Report this
87
Sounds like a great plot for a movie. An informative one and a potential thriller. Think about it.
Posted by TheSchwartz on December 4, 2012 at 10:36 AM · Report this
88
I'm a friend of Valerie's and helped her uncover hoaxer number 2. I think the lesson I learned from all the hoaxers that went after her is that sick individuals will do whatever they can for attention, validation. And it's made me very distrusting toward any other illness bloggers. If the story seems to be too good to be true or too grandiose, then probably not true.
Posted by Boomerdog on December 4, 2012 at 8:01 PM · Report this
89
Wow.. I've never heard of that disease before. I have heard of people that create fake accounts and pretend to be other people, but not this. It really sucks to be sincerely caring for others but finding out they were full of lies. It's also very scary how much drama they cause (I almost feel that 'internet troll' is an understatement!) Great article though.
Posted by aimango on December 30, 2012 at 1:03 AM · Report this
90
It did strike me odd that someone who had been so duped would go for it again and yet another time...but when you are cut off from face to face social relationships the interweb does seem to take on much more importance.

I became a member of the 'young widows' site. (Yay, fuck you 2009, lost my mom same year).
But point being there was SO much craziness there, it was almost good distraction. I did actually meet a couple of awesome women, one of whom I met in person.

Anyhow, it's a great topic because we all have met liars in real life and sometimes missed the red flags at first. The internet just adds that web of believability, and the willingness to open yourself up.
There's a reason your shrink (ok, well maybe not everyone has a shrink) wants to see you in person.

More articles like this please!! Loved it!
Posted by Lisa808 on December 31, 2012 at 12:46 AM · Report this
91
As a student at Ball State University in Muncie, IN in the early 2000s, a woman named Brooke(lyn) Walters lived in my dorm. She was the first person I had ever heard of who faked cancer. She did it well, and without the social media we have today. Google Brookelyn Walters to see the trail of devastation she has left, much like these women. I vowed never to forget her name because I was so disgusted that someone could exploit something so awful for their own financial gain. She fooled so many giving, trusting people. And she's been doing it for almost 10 years now, maybe longer.
Posted by SamanthaM on January 1, 2013 at 5:35 PM · Report this
92
Glad to hear that Valerie is feeling better.

I can understand feeling hatred toward someone who's personally duped you or scammed money from you -- especially during such a vulnerable time in your life -- but as a reader, I feel compassion for all parties involved here. As others have noted, while these young women didn't have cancer, they're clearly sick, and that sickness has taken over their lives and alienated eveyone around them. They'll be lucky to ever develop a healthy, authentic relationship with anyone. Sounds like a very lonely life.
Posted by Amanda on January 17, 2013 at 1:55 AM · Report this
93
Is says this article has been updated. Anyone know where the "update" is?
Posted by Amethyst Ribbons on January 17, 2013 at 9:49 AM · Report this
Cienna Madrid 94
@93, in the original version of the article, one line read: "Alex admits that she posed with a picture of a lifelike doll with a feeding tube months prior--incidentally while pregnant." In our interview, Beth had told me that she saw the picture on Alex's Tumblr blog after Alex announced her pregnancy (which Alex confirmed). After the article's publication, Alex contacted me to correct the record--she had proof that the photos had been taken *before she became pregnant. In light of that, I struck "incidentally while pregnant" from the online version of the article.

That is the only correction made to this piece.
Posted by Cienna Madrid on January 17, 2013 at 10:45 AM · Report this
95
A fascinating read! I feel terrible about what happened to Valerie. It's hard enough to deal with cancer, but to have people mess with you on top of that is so incredibly cruel. All my best wishes to Valerie for a long, cancer free, drama free life.
Posted by Ashley c. on January 17, 2013 at 1:11 PM · Report this
96
Please give Valerie my best wishes. I pray that she is still in remission and feeling better every day. It's unfathomable to me that one could go through such a serious illness and be threatened by outside forces at the same time. Insane! I hope Valerie is well and the nightmare is behind her.
Posted by California Realtor on January 17, 2013 at 8:51 PM · Report this
97
I have a sister whose behavior is somewhat reminiscent of this. But after looking up "narcissism" I came across something that seemed to fit her a lot better--Histrionic Personality Disorder. Factitious disorder is one of many symptoms with HPD. It's number one characteristic seems to be an addiction to attention. Just thought I'd throw that out there for anyone who is having an ongoing problem with a drama queen/king in their lives.
Posted by TeresaD. on January 18, 2013 at 12:36 AM · Report this
98
I've personally run into this, not on the net, but in person. In the tiny town where I live and work, I've run into two Munchhausen's women. What are the odds of that?! One was claiming she had "terminal cancer", yet when confronted had not seen a doctor or had chemo or anything else (?). We later found out she was up on bad check charges and had a lot of dysfunctional family stuff going on.
And the other was a co-worker who claimed to be a former scrub nurse, and who had a continuous series of "health problems", but whose narrative of those problems never quite added up. She subsequently quit, saying she didn't want to "work that much", but soon was managing a convenient store in the next town (?).
That's how you know someone has this mental condition - the stories never add up.
Posted by evodevo on January 18, 2013 at 5:59 AM · Report this
99
I don't think it's true that therapists aren't aware of Munchausens or don't recognize it when they see it -- it's in the DSMIV, you learn it in any psychopathology class, and it's one of the interesting disorders that is likely to stick in your mind. I think rather, that people with this disorder are unlikely to seek mental health treatment, when they do seek treatment, as noted, there is a whole host of co-occurring disorders which may take priority, and finally, there are currently no good treatment protocols for the disorder.
Posted by kllb on January 18, 2013 at 9:32 AM · Report this
100
this is just men's right's advocate material trying to convince us that all women are lying about rape and getting sick. what trash journalism
Posted by jezebel on January 21, 2013 at 6:03 AM · Report this
101
I've seen so many attention whores and drama llamas lying about illness/rape/dead parents/whatever that my first reaction to someone claiming shit is that they're full of BS until proven otherwise. It's that common. Just poke around deviantART or tumblr or whatever long enough and you're bound to run into someone crying about how their friend (who looks suspiciously like them) committed suicide or how they were totes raped by their creepy neighbour lol or how they're a female-to-male transgender begging from random strangers online for top surgery or whatever but are suspiciously comfortable parading around in dresses and makeup and mysteriously doesn't show to any gender therapist appointments made for them by online friends (hell, people claiming to be transgender are so common right now they've garnered the nickname "transtrenders").

Yeah, I know it's cold, but when someone's lifestory sounds more like a bad wangsty Mary-Sue backstory than the experiences of a real person, they're gonna have to prove to me they aren't full of shit until I even begin to believe them.
Posted by ohshititsar on January 21, 2013 at 6:50 PM · Report this
102
101 hits it on the head!! Tumblr is batshit. Loads of sociopaths with self-diagnosed autism or anxiety disorders; if you call them out, their reply with be how Western medicine is "problematic" and "oppressive", thus they're entitled to diagnose themselves. They're usually "social justice warriors", railing against the evil cis White heterosexual man and thin privilege and wealthy privilege. Some even identify as "trans-ethnic" or "otherkin". (Yes, otherkin is when you identify as an animal.) The kicker is how the majority of them post PayPal "Donate" buttons to their blog because they think their pseudo-academic writings are deserving of payment. Or that their "self-care" requires not working.

A few years ago, I found my little sister's Vampire Freaks account. She was around 12-14. She had loads of online friends, enthralling them with made-up stories about her tragic life. Even having multiple cyber-boyfriends across the country; some of whom she'd secretly talk to on the phone. Granted, my sister had a difficult upbringing, but nowhere near the horror she invented online. Creating this character gave her power; she lived vicariously through it. Ultimately, people like her need actual therapy--not the Internet which further enables them.
Posted by milkingsquids on January 21, 2013 at 9:18 PM · Report this
103
I had a college friend who simply could not keep to the facts--every story became an elaborate exaggeration, even when she was telling it in front of people who were there, but her tellings were so entertaining that no one wanted to set the story straight and ruin the fun. But then she got worse. She Munchausened anorexia by eating tiny amounts in the cafeteria then eating from a stash of food hidden in her room. Her lies also became more hateful--she announced being engaged to some guy at home right after her best friend went through a painful breakup with a long term boyfriend. Oh, but the fiance used to hit her--but just a little bit, no sympathy please! By the time she graduated she had no friends left.

We all caught up years later on facebook and she tried to pull some of this cyber-drama, but we were all on to her. It didn't get very far and she rarely ever posts.
Posted by Mouse123 on April 28, 2013 at 1:49 PM · Report this
104
Plot twist: the girl who is called "Kate" in this story turned out to be a faker, as well. Still investigating the details, but the girl we knew actually did not ever have cancer, and was likely not even the girl in the photos we had of her. Sick to a whole new level that the girl behind "Kate" who I had become so close to would take part in something like this, when she was doing the same thing herself. The irony...
Posted by past friends of "kate" on June 1, 2013 at 8:25 PM · Report this
105
@104 - I also interacted with "Kate" when I was illness blogging on tumblr. I really want to know more about how "Kate"'s lies came about. I'm a friend of Valerie's and I helped uncover the first liar that Valerie encountered. Will you email me at althea.blue AT gmail DOT COM? (Cienna, if you moderate this, Valerie will vouch for who this is.)
Posted by Boomerdog on June 10, 2013 at 12:50 PM · Report this
106
"Alex" (Cara Goodman) is back, and on the same blogging website, no less. This isn't even the first time she's returned, but this time she at least has the decency not to use a fake identity as she lies about everything else in her life. OBVIOUSLY, contrary to what she told Cienna, she hasn't limited her internet access at all. Now she blogs about her life as a mother. She's invented a whole new personality, a new backstory, and so on. Her blog is rife with pictures of herself, of her baby, and of course... with lies. She is surrounded by an army of mommy bloggers who know exactly what she did and still defend her tooth and nail. If I had children, I would NEVER associate with someone who I knew faked cancer and AIDS and being raped and many, many more atrocities.

Here is a link with more information about "Alex's" return: http://into-constellations.tumblr.com/po…

STEER CLEAR OF THESE WOMEN. They are liars, sociopaths, and they'll pretend to be remorseful and twist facts around and tear your heartstrings out one by one until you believe that they were the victims in all of this, that it wasn't a choice, that they are blameless. Any word they say, even if it's "I'm sorry" or "I'm trying to change" or "that was in the past" (ESPECIALLY if it's those phrases, actually!), is pure BS. They will steal from you. They will steal your money, your gifts, your kindness, your trust, your energy, your health, ANYTHING they can get their rotted little hands on.

Masters of emotional manipulation and building up lies that would make you feel like a monster for questioning them, they'll suck the very life force out of you and try to destroy anything that is dear to you and would take your attention from them for even a moment. They'll one-up you in a pity contest. They'll try to make your entire life about them, helping them, listening to them, trusting them, thinking about them, crying about them, praying for them.

Question everyone. Question everything. And never trust anyone who has faked things like this, no matter how repentant they seem.

-Gabby (yes, from the article)
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Posted by Gabby E on June 20, 2013 at 2:51 PM · Report this
107
I have personal experience with this! It is terrible. I was a 'friend' for 13 years to one just as this... please, please, please stay clear of these people!!!! I read this article and it was like reliving what I've endured!! This woman actually lived with me for a time in my own home and had me duped... which for anyone who knows me knows that is easy... now that I am away from the woman and looking back on it because I'm healing from my own traumas in life.... I'm just sick. I stood up for this woman, I gave so much and have been so robbed!! PLEASE-stay away from people like this. Even if it sounds ok, please, please, don't be so trusting! This breaks my heart and breaks others hearts who are trying to help me heal from this woman who hurt me so badly! I lost so much.... I'm hunted and haunted by this woman even though she says she doesn't think of me.... she went so far as to send my hubby a facebook email threatening us if I didn't stop MY lies that she would sue us for slander & liable when I tried to start telling the world her lies.... she was supposed to be dead by now. She's duped so many....
Posted by Sherry D. on August 2, 2013 at 6:54 AM · Report this
108
People like this horrify me -- in part for a very personal reason (my daughter and I have an uncommon genetic connective-tissue disorder, and we do belong to some chronic-illness blogs specific to our condition, and I have a friendslocked personal blog.)

I've maintained the same online presence since the 90's, and I have a lot of friends (in-person and online) who have known me since then, but even so, sometimes I've worried that the number of medical mysteries, frightening symptoms, and (recently, due to my daughter's cardiac complications) financial issues are the exact same things that raise red flags about Munchausen's.

Thankfully, I can rest assured that (a) I'm telling the truth, and (b) we have enough medical records to choke a horse -- not to mention the fact that some of the symptoms are quite visible.

But, yes -- as I've gone from a relatively-carefree professional with an active social life who loves to dance, to now being a wheelchair user who doesn't leave the house much except for doctor's appointments (my spinal issues have gotten to the point that I need surgery before I can drive again) . . . online support groups have been INCREDIBLY necessary and have provided valuable medical information at times (when you have a poorly-understood disorder, you need to become your own expert), and actually enabled me to avoid a scheduled medical treatment that would have probably caused more damage, for example (don't give cortisone shots to someone with faulty collagen, because it accelerates tissue degeneration!)

I've been scammed a couple of times -- not by medical fakers, but by "friends" with life drama that eventually collapsed into a web of lies. I'm not sorry that I supported them when, to my knowledge, they needed it -- I'd rather err on the side of compassion.

Illness fakers, on the other hand, do actual damage to people who *genuinely* are suffering from that disease -- drawing help/funds/attention away from the genuinely needy/deserving, making people skeptical of online health claims so that they don't WANT to help for fear of being scammed, creating distrust of people with "invisible" illnesses that are nonetheless disabling, and -- cruelest of all -- creating situations like the pregnant widow @93, driven away from two separate support boards for grieving spouses because her circumstances were "unbelievable."

While I'd like to see these people get the help they need, it's frightening to realize just how little the psych professions know about how to genuinely "cure" both sociopathy and factitious disorders, and that -- aside from imprisonment -- there's very little to stop them from ditching their old online identities and just starting over again somewhere else.

Scary stuff -- and fantastic article, Cienna!
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Posted by AndiPants on October 7, 2013 at 9:04 PM · Report this
109
AndiPants, is it Ehlers-Danlos or Marfan's the two of you have? My younger sibling and I both have EDS, and in light of our rough family history I find some of these comments downright frightening. They're why I hardly ever discuss my childhood or my family online with those who don't already know me. I am a disability activist, a wheelchair user in my 20s who doesn't look ill much at all if I'm just sitting. That misleads people sometimes. I was beaten up by a stranger a few years ago because he saw me with the walking stick I was then using and decided I couldn't possibly need it & must be faking sick for welfare purposes. I was too scared to leave home for weeks after that - but I refuse to be kept down by anything I can fight.

Anyway, re. family & history, I'm a survivor of emotional & physical abuse, grooming & molestation (as an underage teen), bulimia (again as a teen); my father's a (now recovering) alcoholic & my mother died of lymphoma when I was a teenager. On top of all that, I've lost - on average - one friend or family member for every 3 years of my life.

I'm infertile (though also childfree). I have severe EDS, nearly a hundred full & partial joint dislocations on a daily basis and am on heavy narcotics. I also have 3 mental illnesses (not including M), 2 of which are manageable but can't be cured, & half a dozen secondary complications of EDS. My sibling has EDS, several secondary nasties, and borderline personality disorder. We both have PTSD thanks to all we've lived through.

Would *you* believe me about my life? I just don't talk about it...because too many people wouldn't.

I got caught up by a semi-faker once. Her illness wasn't what she was faking - it was a very nasty rare condition, worse and rarer even than mine, and she eventually died of cancer related to it. Her obituary is easily available in official locations online. But she went through a phase a couple of years before where she talked about her boyfriend, and that she'd become pregnant, and eventually she wrote that her baby had been stillborn. She talked about scattering the ashes of her baby son somewhere where she could someday be buried with him. A few months later she "broke up" with her "boyfriend" after the stress the "stillbirth" had put on their supposed relationship. Throughout all this she communicated with her best friend, who lived across the country & had a different email, phone number, all that. A year later she was fighting the cancer that killed her. After she died her mother emailed me, saying she knew I was a good friend to her daughter (who had been a very good friend to me, in spite of her fantasies), and asking if I knew how to contact her best friend as her number didn't appear to be on my friend's pager or anything. I mentioned something along the lines of "at least she's with [baby's name] now" in my return email and was puzzled to see "sorry, who was [name]? I didn't know she'd had a friend who died". I think Mom must have said that to another mutual friend, because that friend then contacted me and outlined all the reasons she believed our late friend had been lying about some major parts of her life - like her boyfriend and ever getting pregnant at all. The illness she had made accidental pregnancy extremely unlikely, and coupled with the information from her mom and the fact that nobody could find her vest friend and her mom didn't know anyone by the name of her daughter's long-term boyfriend...well.

I decided not to make a big deal of it, because I believed it would only cause pain to the people who had believed her, and she wasn't around to apologise or explain or anything like that, and she had otherwise been an amazing friend, so why shame her memory given the likely result? I miss her still. No matter what she lied about, she WAS a true friend to me, and since she's gone I guess it's a moot point now. But I've been more wary ever since.
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Posted by Katharina on November 15, 2013 at 2:10 PM · Report this
deadrose 110
Some internet wags also call it Munchhausen by Proxy Server.

Having been online since the early 90s, I've seen more than my fair share of it, too. It's made me far less likely to bother with support groups.
Posted by deadrose on December 4, 2013 at 3:33 PM · Report this
111
I disagree with calling Munchausen's By Internet an illness. It's no more of an illness by it's other names, malignant narcissism, sadism or sociopathy. If your illness means you constantly need to victimize others, you don't need treatment, you need to be put away. I have a serial internet sociopath who has done irreparable damage to my life over twelve years and will never stop. When is the law going to catch up with these perps? The lure of anonymity and no consequences is the very oxygen these sadistic, under-achieving, ego lacking monstrosities need to thrive. Of course the opposite is also frightening. Either you lose safety because of internet anonymity or you lose safety because no one can be anonymous and then all the nutbags can locate you physically. Perhaps we should legalize late term abortions for these wastes of oxygen whose only lives are to be online fucking up vulnerable others for the fun of it.
Posted by TiredOfLFM on May 2, 2014 at 1:01 AM · Report this
112
Very good article. A word to the wise.

However, I'd like to put in a good word for un-moderated (or just barely moderated) support groups. Yes, I have a disorder. Just one. I've never met another person with this disorder IRL. Thank heavens for the internet! I've been on an e-mail list for nearly 10 years and have participated in other support groups and am admin for one of them. People are almost always genuinely looking for information and support, or we're genuinely offering help. This is important. There are very few doctors who've heard of this disorder and we need the validation as well as good information. I've seen 2 trolls, not very persistent ones (both men, BTW; the one had done his homework and was able to fool me for a little while). We get a few rather silly people who simply get no response and usually disappear very soon.

Perhaps the trolls are attracted by the deadly and dramatic diagnoses?
Posted by NBeth on July 12, 2014 at 12:16 PM · Report this
113
Very good article. A word to the wise.

However, I'd like to put in a good word for un-moderated (or just barely moderated) support groups. Yes, I have a disorder. Just one. I've never met another person with this disorder IRL. Thank heavens for the internet! I've been on an e-mail list for nearly 10 years and have participated in other support groups and am admin for one of them. People are almost always genuinely looking for information and support, or we're genuinely offering help. This is important. There are very few doctors who've heard of this disorder and we need the validation as well as good information. I've seen 2 trolls, not very persistent ones (both men, BTW; the one had done his homework and was able to fool me for a little while). We get a few rather silly people who simply get no response and usually disappear very soon.

Perhaps the trolls are attracted by the deadly and dramatic diagnoses?
Posted by NBeth on July 12, 2014 at 12:37 PM · Report this
114
As a mom of triplets who used to keep up a website and YouTube page angusandthetriplets.com and YouTube/angusandthetriplets (they're still up), I've been the victim of people lying about being pregnant with triplets and suffering the same issues I had during my pregnancy. My heart went out to them. Then I had the women or teenage girls who stole my pictures and videos and used partial truths to start up their own blogs about "their" triplets. Now I'm dealing with people who hear I have Ehlers Danlos and suddenly they have it, too, only to find out later that they were liars. Makes me want to shrink into myself and quit sharing and it sure makes me cynical. So sad.
Posted by angusandthetriplets on July 20, 2014 at 2:53 PM · Report this
115
Valerie, I hope you are doing well. This article made me cry. Some people are so sick. I wish I could punch them all for you. I'm sure you're being as brave as you ever have been. I think about you often.

-Jen (wife of Chris) in NY
Posted by zooky on July 22, 2014 at 10:39 AM · Report this

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