For cancer patients in online support groups, another grief: illness fakers

baronmunchhausen-223x300For all the benefits that the cyber world has bestowed on billions of users, it also has brought out trolls and bullies aplenty. It also potentially has created a new category of sick people. They use online forums to fake illnesses and gain sympathy and even money. There’s even a new term for it:  Munchausen by internet.

To be sure, this is not yet a formal and widely accepted medical or psychiatric diagnosis but a description of a phenomenon that appears to be rising and has gotten media attention when exposed through the experiences of patients with serious and chronic illnesses who band together in online chat groups, writer Roisin Lanigan reported in the Atlantic magazine.

Lanigan says that patients with cancer, for example, find the cyber forums invaluable. They not only allow those with the disease to discuss their fears, emotions, and experiences, they can allow individuals to share tips and ideas on how to cope with situations that patients have never encountered and may be overwhelmed by.

But in documented and sometimes high-profile instances, participants in the support groups not only have pleaded for and received money and donations of goods and other valuables, they have been exposed as frauds and cheats. They’re not run-of-the-mill scam artists or petty thieves. Lanigan says they are “outed” as disease fakers. They devastate those with genuine cancer or other serious illness with the detail they can muster after their symptoms and experiences. Their craving for attention, sympathy, and empathy crushes the spirits of the truly ill, who are vulnerable and need the human connections that Munchausen by internet (MBI) patients just shred.

Becca Jean Munoz, a breast-cancer survivor from Texas who runs her own Facebook support group, told Lanigan that cancer survivors “suffer, emotionally, physically, financially. It blows my mind that someone would fake this disease for attention. It’s sick.” Munoz recently ousted from her group a healthy woman who had claimed falsely in three online communities that she was in the ICU with sepsis and dying of cancer. “It really affects [a support group’s] members when a fraudster is uncovered,” she said. “We’re sharing really personal details of our lives here, and fakers make a mockery of things.”

Lanigan cites Marc Feldman, a psychiatrist at the University of Alabama at Tuscaloosa, for coining MBI as a description in 2000. He told her that people with the condition “are often motivated to lie by a need to control the reactions of others, particularly if they feel out of control in their own lives.” The affliction got its name from a fictional German nobleman (illustration above) noteworthy for his wild exaggeration and tale telling. It has variants, including “by proxy,” a popular plot on medical TV shows with parents’ who injure or make their kids sick to get themselves attention in their treatment.

Lanigan, who herself was diagnosed and treated for breast cancer, says that patients in online support groups don’t need the added stress of having to sleuth out whether fellow chatters are real or fakes. But they do, especially because it upsets and angers them:

There have been no large-scale scientific investigations into the internet’s cancer fakers, and the evidence is limited to only those who have actually been suspected or caught. But among the internet’s cancer communities, it’s an often-acknowledged problem, albeit still a shocking one. Among 10 people from three groups I spoke with recently, every person recalled someone being outed for faking in their communities at least once, if not more.

In my practice, I see not only the harms that patients suffer while seeking medical services, but also their struggles to access and afford safe, efficient, and excellent medical care. This has become an ordeal with the skyrocketing cost, complexity, and uncertainty of treatments and prescription medications, with too many drugs proving dangerous.

Though medical science has made many great advances in its care, cancer remains the No. 2 killer of Americans, claiming almost 600,000 lives each year. Patients undergo an array now of drug, chemo, and radiation treatments, with media reports blaring what seems almost daily about new therapies with drugs costing six figures and more. If the disease weren’t frightening enough in itself, patients can’t help but be dazed by the information they’re barraged with and the financial and personal tolls their illness can impose.

MBI? Let’s see if it is real or just a fancy name for sick or criminal behavior, which, sadly, can flourish online. This is a gentle reminder that not everything on the internet is true nor should it be believed without checking. Alas, as the American Cancer Society has found, patients may be exposed to a burgeoning market of dubious if not outright bad information about their illness and care. Medical misinformation can be harmful and dangerous.

Choose your medical caregivers with care and keep asking lots of questions (be skeptical) about what they recommend. A high level of trust in them may be called for, especially if you’re dealing with major injury or illness. Odds are good they’ll steer you better than randomly discovered internet information. It isn’t easy and it may not be the best time. But patients and their loved ones may wish to arm themselves and become smarter consumers of health and medical news.

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