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Faking a Disease Online: Munchausen by Internet

The Internet has made it easy for multitudes of people with chronic illnesses to connect with one another. However, the accessibility of medical literature, chronic illness-based forums and groups, and the anonymity one possess lead to many cases of people faking various illnesses, most of them terminal. The behavior was assigned the term ‘Munchausen by internet’ (MBI), coined by psychiatrist Marc Feldman in 2000. With a plethora of information and willing sympathizers, earning emotional validation, support, or even donations is at one’s fingertips.

What’s Munchausen by internet and what is it like?
Unfortunately, I already had a run-in with MBI before. I’ve been friends with James (not his real name), an 18-year-old, through Twitter for several months before he told me he was dying of leukemia. From then on, his cancer cast a shadow over our friendship. He would send me pictures of him going to chemotherapy, or he’d tell me that he’s moving back to his home country to get better, less expensive healthcare and be closer to his loved ones. As news spread throughout our social circle, people were aware that he was down to the last few months of his life. His leukemia had reached its terminal stage, and no amount of therapy or even the possibility of a bone marrow transplant could help him.

After 2 years of enduring friendship, James’s girlfriend announced one morning that he had passed away and live-Tweeted her attempts at attending his funeral and the details of his death. It was all very believable; who were we to question anything? We didn’t know that at the end of 2015, a mere ten months later, he would admit that with the help of his girlfriend, he had faked his leukemia (not to mention death). Duping a dozen people or so in the process.

Munchausen by internet, like Munchausen syndrome, is a factitious disorder. A person would pretend to have an illness, usually chronic, on the Internet for sympathy. Symptoms include exaggerated illness-based symptoms, resistance against contact beyond the Internet, and a contradiction between user behavior and physical symptoms. Some even go further and construct entirely fictional identities to act as their MBI persona. And the features that made the Internet so welcoming for some are often weaponized for their quest for sympathy.

How the Internet’s features get exploited
It’s been increasingly easy to search up information on the Internet. The medical information on websites such as WebMD and NHS are often considered reliable, with detailed descriptions on symptoms, expectations, and possible treatment routes. A person with no previous medical knowledge can easily claim that they have a terminal illness like cancer; they could also steal strangers’ photos of themselves (or their diagnosis, if they happened to share it) to further make their story believable. This was most prominently featured in the Dirr case, where Emily Dirr created 71 different personalities on Facebook in an attempt to make the story of Eli, a young boy fighting cancer, more believable.

Furthermore, people are more welcome others seeking support in open arms: a case involving Marissa Marchand was rooted in compassion. She had reportedly received help in the form of money and gifts like wigs for her chemotherapy from the forum’s members; by manipulating members’ good faith and kind intentions, she had turned her medical condition into a cash cow by which she could receive donations and other financial assistance, much like many others. The exploitation of people’s goodwill seems to be central to high-profile cases surrounding MBI: Kaycee Nicole fooled millions with her realistic, bare-bones struggle against leukemia. Wellness blogger Belle Gibson winkled a book deal, an app, and presumably a fortune out of her fight against brain cancer. But people often forget about others who are involved: the victims themselves.

Picking up the pieces
After the fraudster has been discovered, most groups attempt to prevent the person from benefitting even further by cross-posting information from one forum to another. If they are lucky, major publications will pick the story up, catapulting the issue into the public eye. But it’s difficult to measure the emotional damage that people with MBI have thoroughly dealt on people who thought that they had a connection with them. So far, only a few research papers have thoroughly explored why those with MBI choose to fake diseases they’ve never had and dupe people they’ve never met. Less research has been devoted to the psychological effects this may have on their victims.

Furthermore, it’s always a question of “Why would they do that?” that haunts those affected. Perhaps it’s because those with MBI needed to be loved, and the Internet seems to be an eternal spring of support and love. It’s what makes faking it so enduring: it feels so good to be loved. A now-deleted Wired article details the stories of various people with Munchausen syndrome (by Internet) and a poignant quote from one of those interviewed, “Sara”, stands out:

“Just because it is given a name, Munchausen syndrome or Munchausen by internet syndrome, does not mean that I can or will get away with everything I have done. I am a fake, a liar, a fraud, a manipulator, whatever you call it. I have intense self-hatred and I know that I am pathetic, despicable and evil… Everyone wants and needs someone to care for and about them. Humans crave love and attention. We all want to feel loved. We all want to feel that someone actually cares about us.”

The Internet has made it surprisingly easy to have an illness. Common courtesy has warded off suspicion on delicate topics as a chronic, life-threating illness; despite the work of hoax-busters against possible fake cases of cancer or deaths, there could be (and possibly is) hundreds, if not thousands, cases of Munchausen by internet. And the damage, whether financial or psychological, may not be measurable.

After James’s letter had gotten out, Munchausen by internet had splintered my former social circle and destroyed any chance of reconciliation with James and his now-ex-girlfriend. To this day, I wonder why we had been so easily duped. In a sense, “Sara” was right. We all wanted to feel loved. Some people just chose to do that at others’ expense.

Final Editor: Mana Reed Stutchbury
Cover: Unsplash/Marcelo Leal

Karina Afandy
Hailing from Indonesia, Karina is currently studying Communication Science at UvA. Whenever she’s not stressing about the films she’s going to watch next, you can find her reading history books or napping.

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