Munchausen by Internet

New technology brings with it new ways to hurt, scam, and lie to other people. I know more than I'd like to about trolls, phishing, and other common abuses of the Internet. But I hadn't realized that there are apparently a disturbingly large number of people masquerading as terminally ill.

I read "The Lying Disease," an article by Cienna Madrid in The Stranger, our local alternative paper. I found the article deeply affecting, and the abusive behavior described in it enraged me. Here's the gist: some people pretend to be ill in online correspondence, seeking attention in forums that exist for people with illnesses to find community and support, or by communicating directly with others who they expect to be sympathetic. It's like Munchausen's Syndrome, the infamous mental illness whose sufferers fake physical illnesses to the point of having unnecessary surgeries. (Munchausen's by Proxy is the disease in which you cause illness in someone in your care in order to bring sympathy and attention to yourself; if you saw the movie "Sixth Sense," you saw Munchausen's by Proxy.) But with Munchausen's by Internet, no one has to actually suffer physically for you to benefit from the sympathy and attention of strangers. Therefore, it's much easier to achieve and it seems to be becoming an epidemic.

Why would someone feign illness? Is it in part because the media portrays chronic, serious, and terminal illness as romantic? For example, people with cancer are portrayed as noble and courageous; dying from a terminal illness (as opposed to a car accident or gunshot wound) is shown as tender and touching. And of course, there's plenty of drama involved in TV and movie renditions.

When she lost her hair during the first chemo treatments in
2006, Sandy had me take photos every few days to document
it. As her hair became wispier, she ended up with a little
pointed bit on the top, like Tin-Tin. I was surprised that she
didn't know who that was, but after doing a little online
research, she embraced the nickname.

In real life, at least as I witnessed it, terminal cancer was a bother. It and its treatment got in the way of Sandy being able to do the things she wanted to do, but it wasn't dramatic except for the initial diagnosis period and the roller coaster we were on the last five weeks of her life. Even her severe headaches and nerve pain in the spring weren't dramatic; they were frustrating and agonizing, but if anything, Sandy wanted to pretend they weren't there. She wanted to find relief and forget about them.

Sandy never wanted cancer to become her identity. She downplayed her metastatic cancer, afraid of whining and of changing how people thought of her.  In fact, she was surprised to learn that she'd been so casual about it that most of the fans at Escapade in early 2011 didn't even know she had cancer.

I understand the desire to have people shower affection upon you, and I was certainly gratified by the outpouring of love that Sandy received. But I can't imagine enjoying affection and caring that was based on a lie. My overriding need throughout my life has been to be known, and to be loved by those who know me best. How hollow must the joy be when you're shown love based on a fraud?

Sandy's biggest frustration in the months before she died was that her energy each day lasted just long enough for her to do the basics (dress, eat, check email) and go to whatever appointment she had that day. Her to-do list wasn't getting any shorter. Her days felt pointless because she felt she was just treading water.

Now, imagine one of these cancer fakers had pulled her into a correspondence, sucking the tiny bits of energy she had into their manufactured dramas. That's exactly what these folks do, demanding the attention and focus of people who need to be prioritizing their own care, their own lives, and making a difference in whatever meaningful way they can, whether they're dying or suffering through treatment for an earlier stage of cancer. It's appalling enough to drain some energy from a healthy person, but far more damaging to further exhaust someone who has no reserves.

It's clear to me that Munchausen Syndrome by Internet does need to be added to the DSM-V, due out this coming May. But I'm wondering if that's enough. I don't know how you'd create criminal or civil law to cover this, exactly, and it's territory that seems a little problematic to approach through the law. But the damage this behavior does is real, and it's perpetrated upon people when it's likely to do the most harm.