by Mary Aiken
Prior to the introduction of the Internet, your good, old-fashioned hypochondriac had to painstakingly thumb through great tomes such as Gray’s Anatomy—1,217 pages of obscure convoluted medical text—to provoke new ideas and fuel their anxiety. Now the obvious place for these frustrated folks is the Internet. You can find them hanging out in medical chat rooms, discussing their rare illnesses in forums, and logging on to intuitive diagnostic websites—where algorithms lead them, click by click, through the experience of being diagnosed with the same simplicity that prompts the general computer user through the installation of a new piece of software. (More on these “diagnostic” sites later.) Now all that information, and a great deal more, is available with the click of the keyboard, and about as hard to resist for the hypochondriac as Internet porn is for the pornography addict.
So what is the motive for anyone to engage in online medical search? My own research in this area found that many people are simply curious, like acquiring new knowledge, and enjoy the feeling of empowerment—which gives them confidence to challenge medical authorities and professionals. Others could not afford the cost and time involved in the medical consultation process. Another interesting piece of the motive puzzle: One researcher found that the average length of a consultation with a family practitioner is about eight minutes, but the “super-knowledgeable” patient who comes prepared with his search printouts tends to take up more of a physician’s time. This is an interesting gain for the attention-seeking patient in the era of overworked physicians with a cattle run of patients: more face time with the doctor and value for your money.
Psychosomatic-type behavior is highly complex and often associated with impulsivity, which itself is associated with addictive behaviors. Intermittent reinforcement, as discussed in chapter 2, could also be a motivation for the cyberchondriac, as the Web symptom crawl becomes a form of lottery ticket that occasionally delivers a rewarding result.
Munchausen by Internet
Farther along the continuum, we finally arrive at conversion disorders, a category that represents some of the more extreme manifestations of chronic illness. In common parlance, these are “hysterical” conditions, which used to go by such names as “hysterical blindness” and “hysterical paralysis.” Now renamed functional neurological symptom disorder, Munchausen syndrome, as it was originally known, is a psychiatric condition in which patients deliberately produce or falsify symptoms or signs of illness for the principal purpose of assuming the sick role.
Munchausen itself has a colorful background. Back in the eighteenth century, Baron Karl Friedrich Hieronymus Freiherr von Munchausen was a mercenary during the Russian wars of Peter II against the Turks. In retirement he became something of a curiosity—and renowned for telling tales of his adventures, often “over a bottle.” In 1785, when Munchausen was still living, a scholar-turned-thief named Rudolf Erich Raspe published a book called Baron Munchausen Narrative of his Marvellous Travels and Campaigns in Russia, which made the most of the Baron’s outlandish stories. A huge success, the book forever associated the name Munchausen with wild falsehoods. This led a British doctor, Richard Asher, to refer to patients who fabricated dramatic illnesses as suffering from “Munchausen syndrome” in 1951. And later, a pediatrician, Roy Meadow, borrowed the term to describe those who fabricated or induced sickness in others (usually their children) as suffering from “Munchausen syndrome by proxy” in 1977. Since then, there have been controversies about diagnosis and expert testimony, and a proliferation of various conditions that were once just called Munchausen by proxy.
People with a Munchausen-type syndrome, also known as “hospital addicts” in the U.K., are a much rarer bird than hypochondriacs, but they share a few traits, one being an antagonistic relationship with members of the medical profession. Like hypochondriacs, they also tend to be highly knowledgeable about symptoms, medical treatments, and care. As Laura Criddle, a critical care nursing specialist, relates in her article “Monsters in the Closet,” quite often the Munchausen syndrome individual develops the condition after hospitalization for a true illness and then begins to lie pathologically about made-up maladies. They seem to be gratified emotionally by fooling doctors, and enjoy having a deceptive relationship with them.
When the syndrome takes a different name, Munchausen by proxy, it is rarer still—and the motivation changes. The individual with the syndrome (most often a mother, in 93 percent of the cases) uses another person (usually the mother’s child) in order to work out a disturbed scenario with medical experts. Dr. Meadow, who gave the behavior its name, described one mother who mixed her own blood into her baby’s urine sample in order to fake illness. Another mother poisoned her toddler with table salt.
One of the most famous cases of MSbP, as it’s called in the clinical journals, is that of Kathy Bush, a Florida woman whose twelve-year-old daughter, Jennifer, endured two hundred hospitalizations, forty surgical procedures, multiple poisonings, and treatment for dozens of serious and suspicious infections over the course of her childhood. After Kathy Bush was arrested in 1999, the girl was sent to live in foster care out of state, where she received medical care and improved. Later, she was reunited with her mother and denied abuse had taken place.
It’s a form of child abuse, but unlike a parent or caregiver who cruelly harms children by lashing out in anger and frustration, the Munchausen by proxy mothers are motivated by an insatiable need for social attention and recognition. They become emotionally rewarded by their ability to fool people, to receive praise and sympathy, and to be perceived as being embroiled in something important. Of course, there are sometimes secondary gains or motives—subsidized housing, welfare, free medications, and financial aid. But the big driving factor seems to be a desire to be seen as an angel, a rescuer—a stoic caretaker of a chronically sick child. It becomes the mother’s identity.
Technology has the power to exacerbate a factitious disorder—when a person deliberately feigns or exaggerates having an illness. It doesn’t require a huge imagination to see what happens when you mix a disturbed individual who likes to fake illness with the richness and plausibility of information now available online—or the communities that gather there. As long ago as 2000, Dr. Marc Feldman, a psychiatrist in Birmingham, Alabama, who specializes in factitious disorders, coined the terms virtual factitious disorder and Munchausen by Internet to describe those who use the Web to aid their deception and masquerade. (Feldman himself runs a Munchausen website, where members of the cyber-public can report new suspicious cases.) Some specialists have even made the case that Munchausen by Internet is a natural evolution of the original condition—a more efficient and rewarding environment for the patient’s deceptions. Think about it. Logically the sympathy of hundreds of people online is far more powerful than sympathy from one person in a white coat. And rather than deceiving a small circle of friends, neighbors, and medical professionals, they can fool potentially millions.
A shocking example of Munchausen by Internet was perpetrated by a blogger, David Rose (a.k.a. Dave on Wheels), who described himself to his virtual audience as a profoundly deaf cerebral palsy victim and quadriplegic living in Los Angeles. Over a period of four years, between 2008 and 2012, he inspired a growing fan base of followers on Twitter and Facebook with his funny asides and heartbreaking story, which he said he wrote using a Tobii computer that followed the movements of his eyeballs. As he garnered more and more attention, Kim Kardashian and other celebrities began retweeting Dave’s sad musings and bravely uplifting one-liners. Then, out of the blue, his “sister” Nichole posted the stunning news of Dave’s death from pneumonia on his Facebook wall. This unbearable end to the Dave on Wheels saga drove thousands to leave “RIP” comments on his page while continuing to share his poignant story with others online. One die-hard fan even booked a flight to L.A. to attend Dave’s funeral, prompting a confession from “Nichole Rose” that Dave was a fictional character, a persona invented to “inspire people to love and live a better life.
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What drives an individual to such lengths of pathological lying and stagecraft is likely true mental illness—not just the desire to create an Internet hoax or cute joke. And in spite of Munchausen sufferers’ need for sympathy, it’s pretty hard to muster much of it for people who enjoy manipulating and fooling others, or the Munchausen by proxy individuals who abuse their children for emotional gain. This isn’t usually the case in cyberchondria by proxy, the condition we’ll get to next, which is quite often the result of good intentions gone very wrong.
Cyberchondria by Proxy
The Sydney Morning Herald told the story of a devoted son who was worried about his father, a seventy-year-old man who complained of body aches and jaw pain when he chewed. He had been diagnosed with temporal arteritis, an inflammation of the vessels that supply blood to the brain and head, and was taking a number of medications.
The son was suspicious about all those drugs—and wondered if his father’s pain could be a side effect of one of his many prescriptions. Sure enough, he found exactly what he was looking for online. His father’s symptoms were listed as possible side effects of Lipitor, the popular cholesterol-lowering medication that his doctor had prescribed. Well, that was easy. All his father had to do was stop taking it for a while and they’d see if his pain went away.
But when the man’s father went off Lipitor, instead of getting better, his condition deteriorated rapidly. The pain grew more intense, and he was rushed to the hospital. After an examination by his physician, the man’s temporal arteritis was found to have gotten much worse. If untreated, he would lose his sight. The reason he’d gotten worse? The Lipitor wasn’t hurting him, as the online information seemed to suggest—it was keeping him alive.
In the newspaper account, the man’s physician, Dr. Brian Morton, former president of the Australian Medical Association in New South Wales, spelled out the problem: “There is potential for Dr. Google and well-meaning family members,” he said, “to cause catastrophe.”
When reading the initial study of cyberchondria done by White and Horvitz, I was impressed with the attention to detail, the volumes of data, and the meticulous way that the two scientists had compiled their findings and supported the construct of the condition. But something else drew my attention: While the results showed that 58 percent of individuals who did a medical search online were searching for themselves, the figure that jumped out at me was the staggering number of slightly more than 40 percent who searched for relatives, friends, work colleagues, and practically anybody else.
Academics call this a “gap in the literature.” I saw it as an opportunity to identify a new cyberchondria-type phenomenon, describing those who habitually and compulsively search for others. I used Munchausen and Munchausen by proxy as models, and after the exciting results came in and my findings were written up, the term cyberchondria by proxy was introduced.
Nobody would argue that responsibilities of caring for young children and elderly parents aren’t sometimes overwhelming. When a child becomes sick with a high fever—even with the common cold or flu—parents experience an extreme kind of anxiety. According to Laura Criddle, all parents “present somewhere on a continuum of medical neediness.” Many normal parents worry—even becoming hypervigilant or misinterpreting and exaggerating their own children’s behaviors and symptoms. If by some chance you happen to experience a “near miss”—when a doctor or medical expert misdiagnosed your child’s illness—this can also result in a growing mistrust of members of the medical profession. This kind of trauma can cause an individual to become more dependent on online searches, and one of the most unfortunate outcomes of cyberchondria by proxy is the amateur prescribing of cures and medicines, the dispensing of prescription medications to unsuspecting friends and family. Don’t share your pharmaceuticals with loved ones! And don’t send anyone to a so-called Canadian pharmacy to buy cheaper drugs. In 2013, more than 1,600 of these Internet pharmacies (none of which was actually in Canada) were shut down. In many instances these drugs, when purchased by undercover agents and tested, were found to be not cheaper generic drugs but out-and-out counterfeits.
My own research findings in this area included some cautionary tales. One woman reported an incident in which her partner had been given medication by a relative who had searched online, and the dose provided had been too strong—in fact, it was an overdose. A number of participants described bringing printouts to a doctor’s office, referring to a Web search as similar to getting a “second or third opinion,” and noted that the practitioner’s attitude toward their self-diagnosis was “disdainful” or “dismissive” or “irritated.” Participants were supportive of using chat rooms for medical information exchange.
Interestingly, cyberchondria by proxy individuals do exhibit behaviors found in some of the more serious disorders—the challenge to authority, compulsive medical information seeking, escalation, and symptom checking. Connecting these dots was beyond the bounds of my study, but it may be an important component of fully understanding this phenomenon in years to come.
One finding spoke volumes to me: Participants with a medical family background reported resisting the temptation to search.
Your Imagination + Artificial Intelligence
There is regular search—just plugging in a word, or two words, and getting results that make you anxious. That’s where most people start, hoping to satisfy their curiosity about a medical problem.
Next, they might visit a diagnostic website. These sites are designed to lead a worried participant through a set of questions to determine a probable diagnosis.
This is where the power of suggestion becomes a factor. As humans, we can be highly suggestible. Suggestibility describes someone who is “easily influenced by other people’s opinions,” or, in this case, the opinion of an algorithm.
How can a normal, healthy person who’s experiencing some health anxiety wind up manifesting some actual symptoms?
Let’s say you have a pain in your arm that you’re worried about. You did a pretty exhausting workout in the gym yesterday, but that fact isn’t front and center in your mind. So you find a nice diagnostic website to ease your worries. If you enter the words to describe your main concern, “pain” and “arm,” you will be presented with a nicely laid out graphic with little directional arrows. First you’ll be asked if you’ve experienced pain in your arm. When you answer yes, you’ll next be asked if you’re experiencing tingling in your fingers.
Here’s something to try at home: Hang your arm down by your side, relax, close your eyes, and wait a minute. If you imagine a line going from your tired neck to your stiff shoulder and through your sore tennis elbow all the way to the tips of your fingers still pulsing from relentless tapping on keyboards eight hours a day…
Do you feel that tingling?
Of course you do.
Now you’ve graduated to the next question on the diagnostic website: “Is the pain in your arm radiating across your chest?”
Now that you mention it…
You click the box that says “Yes.”
Question #4: “Are you palpitating?” Of course your heart is beating fast—you are having an anxiety attack—but along the way, you have picked up a perfect “cluster of symptoms,” something you’ve been taught by the website.
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A real doctor has been taught to carefully avoid prompting patients with questions like “Is there tightness in your chest?” And medical professionals know that practicing good medicine means not encouraging suggestibility. That’s where diagnostic websites fall short. They seem almost designed to spark the imagination. And while they attempt to provide diagnoses, they are actively suggesting, prompting, and even provoking symptoms.
Think about it this way: If you are having a problem with starting your car, the act of searching for an answer online is not going to intrinsically damage your car. But if you are having a problem with your health, the very act of reviewing symptoms may help them to manifest physica
lly or mentally in a technologically amplified psychosomatic effect. I have another unofficial term for this, technosomatic effect.
So your heart is racing, your chest is tight. With your painful arm, you pick up the phone and call 911. When the EMT arrives, you reel off a perfect cluster of symptoms that have been prompted by the website. You may be the wrong age, have no relevant history, and appear reasonably well. But how can the EMT—or the emergency room doctor—be certain? Your perfect cluster makes it sound like a textbook cardiac event.
A medical professional has no recourse but to run a battery of tests, scans, EKGs, MRIs, and blood panels—or whatever intrusive diagnostic procedures are called for, given your cluster. If nothing unusual is found, often another round of tests will be ordered, and panels, scans, and follow-ups.
The irony of this sequence is that many of the diagnostic procedures carry an inherent risk. As anyone who has been brought back for a second ultrasound or a more comprehensive mammogram knows, one of those risks is the heightened stress and anxiety from the medical testing alone. Empirical evidence supports this. One of the highest anxiety-inducing events in life is awaiting the results of medical tests and diagnoses.
But something much worse can happen: A medical problem of some kind will be found. Why is that a problem?
Knowledge, as you’ll see below, is not always a good thing.
Getting That Full-Body Scan