The Cyber Effect

by Mary Aiken

  It’s a medical matchmaking service of sorts—syndicating individuals with similar symptoms. And the way people sort themselves into illness forums creates a fundamental shift in the psychology of the environment. For epidemiologists who study the incidence of illness in the general population, disease is a numbers game. For example, how many people do you know personally who’ve had a cold? Let’s say hundreds or even thousands. How many people do you know who’ve had swine flu? Not many. This difference in incidence doesn’t matter just to scientists. It informs our own perception of our health and vulnerability. In other words, due to relative incidence, you feel more likely to get a cold than swine flu.

  Until you go online…where a virtual community, drawn from a population of hundreds of millions, is suddenly on your desktop, and nearly all of them with a similar complaint. This has a rather grave cyber effect on your perception. For Lisa, she was plunged into a world where every single person she would encounter or read about claimed to have Lyme—and often in some drastic late phase. This too, as discussed previously, is online syndication—the one-to-many and many-to-one interactivity facilitated by algorithms. It’s similar to how deviants and swingers find each other online, but with a different result. In the environment of a medical forum, surrounded by fellow sufferers, you are much more likely to believe you are ill, and even seriously so.

  The participants in the Lyme forum, where Lisa wound up, had raised more than twenty thousand different topics regarding the disease, and these had generated seven times as many replies. And despite the promises of comfort, most of these were terrifying. In 2009, a young mother shared the details of her treatment regimen with a Lyme newcomer:

  I am on 40 pills a day, b-12 shots twice a week and Rocephin IVs 2 times a day, four days a week. My LLMD is going to umm change some things up when I go back in June if I am not better by then.

  Only time will tell. Ummm I was diagnosed in January. I have been sick most if not all of my life.

  All we can do is learn as much as we can to fight this disease and it’s co-infections and fight to get well. Just stay positive and in time, it will be easier to accept the diagnosis and start to move forward.

  At times it is overwhelming because I passed it to both my daughters and I don’t like seeing them hurting. But I have ummm talked to them about the disease and they are ok with it. That makes it easier on me.

  Who are these “experts” in the medical forums? In that lean, virtual, and socially impoverished medium, the old-school metrics can’t be used to establish trust. You don’t know whom you’re communicating with, so—much more important—why are you taking their advice?

  According to the forum, there was evidence from a new study that Lyme might be passed from a pregnant mother to an unborn child, and another study suggested that the disease could be sexually transmitted. The fact that most doctors would consider these studies inconclusive was not mentioned. And like most of these sites, content is not monitored for accuracy. Medical misinformation can also leak and spread from one site to another, making it seem consistent and valid as you search, but in fact being merely the result of copy-and-pasting of erroneous facts and opinion. A Pew Internet Project study of medical information searches in the United States showed that eight of ten online health inquiries began with a search engine, but only a minority conducting them bothered to check the sources of the information or the date that the webpage was created.

  Lisa’s panic rose as she read the posts and comments from supposed Lyme “insiders,” her mind swirling with all the new information about drugs, injections, symptoms…Come to think of it, my neck does feel a little stiff. If she had approached this physical sensation logically, she would have realized that her neck pain was likely the result of all the hours she’d just spent hunched over her laptop, not Lyme.

  But health anxiety is not about logic.

  Down at the bottom of the MDJunction webpage, there was a fineprint disclaimer, one of those endless scrolls of terms and conditions that nobody reads before they click “Agree.” It reminds me of the notices in restaurant cloakrooms and restrooms: “We are not responsible for lost or stolen items.”

  These signs, it could be argued, indicate that the proprietor is aware of the risk by specifically denying responsibility for it. The medical disclaimer at the bottom of the page where Lisa was looking—“The information provided in MDJunction is not a replacement for medical diagnosis, treatment, or professional medical advice”—leads to the same idea.

  But by then Lisa—formerly healthy, thoughtful, and relatively carefree—had descended into hysteria. As the sun began to rise, overtired and strung out, she became determined to not let Lyme disease overtake her body and ruin her life, as it had ruined the lives of so many she now felt she knew. She searched for a local medical clinic, checked the hours of operation, and emailed for an appointment, even though it was a “walk-in” clinic that didn’t require one. She bookmarked the driving directions on her mobile phone, wrote down the dose of antibiotics she planned to ask for, and called her husband to recount the bad news.

  Her visit to Cape Cod was a disaster. By day’s end, when she finally reached home—having made no progress with Michelle in planning their high school reunion—Lisa had spent hundreds of dollars on an unnecessary doctor’s visit, obtained a prescription for a course of strong antibiotics that would give her indigestion, gastritis, and an awful yeast infection. Worst of all, the chair in the doctor’s waiting room where Lisa was sitting had been previously occupied by a teenage boy with a highly contagious viral flu and a 104-degree temperature. Three days later, Lisa came down with the same flu—and gave it to her entire family. They spent the next two weeks in bed.

  Did Lisa have Lyme disease? Almost certainly not. Her malady was just as insidious. Overnight, she’d become a poster child for a twenty-first-century phenomenon called cyberchondria.

  Symptom + Algorithm = Heightened Anxiety

  The human mind is the most complex of machines, a wonderful labyrinth of biological engineering and design. But despite centuries of scientific investigation, the darker reaches of the psyche are still poorly understood. Psychosomatic involves both mind and body. There’s a common expression that, while reductive, describes it pretty well: “It’s all in your head.”

  Nobody has quite described the classic health anxiety sufferer as well as Joseph Heller. In Catch-22, his satirical novel about World War II, we meet Hungry Joe, an air force pilot who has completed his mandatory requirement of flying fifty missions and is now waiting to go home. Hungry Joe has quite an arsenal of neurotic inclinations and compulsions. He has “collected lists of fatal diseases and arranged them in alphabetical order so that he could put his finger without delay on any one he wanted to worry about.”

  The novel predates the Internet by decades, but Hungry Joe’s condition is very twenty-first-century: fingertip search, categorized lists, a need to worry that only escalates with more searching. He’s a high-achieving anxiety case addicted to worrying.

  The term cyberchondria was first coined in a 2001 BBC News report, popularized in a 2003 article in Neurology, Neurosurgery and Psychiatry, and later supported in a groundbreaking study by Ryen White and Eric Horvitz, two pioneering research scientists at Microsoft who wanted to describe an emerging phenomenon engendered by new technology—a cyber effect, in other words. In the field of cyberpsychology, we define cyberchondria as “anxiety induced by escalation during health-related search online.”

  The word anxiety is really a catchall for a range of emotions that are a manifestation of anxiety—worry, nervousness, dread, panic, hysteria. The word escalation in this medical context refers to the common trajectory from run-of-the-mill complaints to more serious and rare illnesses. You search online for “sore throat,” for instance, and find yourself engrossed and horrified by descriptions of esophageal cancer. Anxiety escalates as well.

  How serious is cyberchondria? It’s helpful to think of psychosomatic-type condition
s as a continuum. The family of illnesses now called somatoform disorders all involve presentation of bodily symptoms suggestive of medical problems for which no organic basis can be found. At the far left, you have the “worried well,” and that’s most of us, who may imagine we are sick sometimes when we aren’t. Next on the continuum, you have “health anxiety,” which can be fleeting but is no fun. It is described by Gordon J. G. Asmundson, a leading scientist in the field, as being due to “fears and beliefs, based on interpretations, or, perhaps more often, misinterpretations, of bodily signs.” Anxiety occurs in normal populations and in some cases can interfere with and disrupt relationships, employment, and recreation activities.

  “Cyberchondria” comes next in seriousness, and it can also be fleeting or chronic. I first heard about it through the work of White and Horvitz, who published their research in 2008, starting the process with a 40-million-page random sample of “Web crawls.”

  Forty million? Now that’s what I call a study.

  Scientific research has relied heavily on sampling since 1662, when the English merchant John Graunt invented a method to estimate the population of London using partial information, that is, based on a sample. The very idea of a sample now seems pretty quaint. With the rise of big data, traditional research methods are being jettisoned. Why look at a limited subset or representative sample of a data set when you can look at everything? The unknown sample—N—that scientists seek to define could eventually encompass the entire known population itself.

  White and Horvitz, in the largest study of its kind—can we stop for a second and try to fathom what it means to consider 40 million pieces of anything?—were able to support the relationship between medical search online and heightened incidence of health-related anxiety. When ten thousand of these Web crawls were manually analyzed, the research scientists were able to confirm there was an escalation in many searches—showing that searchers had progressed from reading about normal complaints to looking at rare and serious medical conditions. In a companion survey of 515 individuals, nine of ten respondents said they’d conducted at least one online search for symptoms of common medical conditions that led to a review of more serious illnesses. One in five said this happened to them “frequently.”

  The conclusion: “The Web has the potential to increase anxieties of people who have little or no medical training,” White and Horvitz wrote, “especially when Web search is employed as a diagnostic procedure.”

  I met Eric Horvitz at a Microsoft summit in 2012 and sat beside him at dinner. At the time, probably less than a handful of people worldwide were researching cyberchondria. By then, I had spent three years studying his brilliant work, conducting research, and writing papers inspired by his initial findings. We talked nonstop that night about everything from hypochondria to Munchausen by Internet (which I will describe a bit later in this chapter). Our table companions looked on, baffled, as if trying to figure out what language we were speaking. “Cyberchondria?” one of them chimed in. “I haven’t seen that movie yet.”

  The desire for information that will help us thrive is a natural, primal urge, as discussed in earlier chapters, like the act of seeking itself, a gratifying and dopamine-rewarding experience. But in the case of medical information, the good feeling doesn’t last long.

  Why? Because for years and years, the algorithms that drove search results did not take clinical incidence and statistical probability into account. Instead, they were based on advertising-type search models. Rankings were done by “frequency”—a crude metric that wound up presenting information very differently from the way a doctor would. Imagine for a moment that you went to your doctor complaining of a headache, and she said, “Well, you could have anything from a hangover to a brain tumor.” “Oh my goodness,” you’d likely respond, “talk to me about the brain tumor!”

  Obviously your doctor wouldn’t say that, but this is what health-related search was like. It offered a selection of options that included the worst-case scenarios, and people had a tendency to click on those first. This impacted the frequency rankings, moving the worst-case results up to the top of the results. And because the algorithm did not take into account your age, gender, general health, or medical history, it had little or no context.

  Two of the leading causes of anxiety are uncertainty and perceived danger. The cyber effect of online medical search only adds information overload to the mix, creating a vicious cycle that may lead anybody into a vortex of dread. The bottom line: Instead of getting the considered, educated opinion of a medical doctor who has studied probability and risk, the worried individual looks at the search results and sees at the top of the list some of the most extreme, horrifying scenarios.

  This is why a search would offer a brain tumor as a possible cause of your headache, without noting that this type of tumor occurred in just .002 percent of the population, mostly in a certain age group that was probably not yours. Yes, your headache could spell certain death. But the chances of that are infinitesimally small. The only thing that health search gave you was a big dose of anxiety, which is far more likely to harm you than the illness you don’t have. It was like this from the inception of search until early 2015—when everything changed.

  Now if you put in the words “head” and “neck” into a search, a pop-up box appears with a probability statement for “head and neck cancer.” Yes, you may still be studying the symptomatology of a wide assortment of malignant brain tumors, but now, at least, you’ll know the chances of having any of them are “rare.”

  But that won’t deter some people from searching and searching, almost as if they are hoping to find something to worry about.

  Hungry Joe + Hypochondria

  Hungry Joe became anxious if he didn’t have missions to fly. He had become addicted to the adrenaline rush, and he missed the anxiety and drama when it was gone. In the absence of that excitement, he looked for other things to worry about, and his alphabetical list of maladies and disorders provided it.

  Moving along my continuum of health anxiety, we wind up on familiar ground, hypochondria—clearly the condition that Heller meant for Hungry Joe. Once upon a time in recent history, there was a genuine disorder called hypochondriasis. It referred to a situation in which individuals were inordinately preoccupied with their own health—or rather their poor health. I say “was” because the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) made a number of sweeping changes. About 75 percent of what we previously called hypochondria is now subsumed into a new diagnostic concept called somatic symptom disorder, and the remaining 25 percent is considered illness anxiety disorder.

  Losing an official diagnosis and description may cause anxiety in its own right. Many people become quite attached to their diagnostic labels and don’t appreciate watching their illnesses classified away. In the interest of clarity, please forgive me if I just use the good old-fashioned term hypochondria, as it is popularly understood. All the literature that I will refer to, written over the past hundred years or so, uses that term.

  What are hypochondriacs really like? They have a general preoccupation with health that is distracting and life-altering—and they are sure there is something seriously wrong with them. Rather than consciously faking their symptoms (like some other disorders, which I will get to soon), hypochondriacs can have authentic physical symptoms and changes in the body that cannot be traced to a cause other than the mind. Family members may roll their eyes—“Guess what kind of cancer Mom thinks she has now?”—but in many cases, Mom truly feels the pain, numbness, tingling, or tightness that she persistently complains about.

  Fed by a great deal of anxiety and imagination, hypochondriacs have a deeply held belief that small symptoms and physical glitches are signs of a serious and probably fatal condition, but have trouble supplying a precise description of their symptoms. They are amateur medical experts, avid readers of health newsletters, medical studies, medical magazines, and books about medical topics. They re
peatedly seek medical advice and make frequent visits to the doctor’s office, but their anxiety and concern aren’t abated by a doctor’s reassurances that they are fine. In fact, they are likely to be disappointed when no actual physical problem is found. This only escalates their ruminations about an undiagnosed disease.

  Another trait of the hypochondriac is a distrust of the medical profession—and a subconscious wish to undermine the authority of the doctor. The patient knows best. When a doctor can’t seem to find a problem—and therefore no cure—the hypochondriac will move on to a new doctor. The hiring and firing of many physicians in an unreasonably short period of time is another indication of the condition.

  You’d be hard-pressed to find many doctors who enjoy their time with these difficult patients. Some doctors regard people with health anxiety as nuisances who take up space and time that could be devoted to truly sick people in need of care. And when the day finally comes when a doctor gives a patient the news that they do have a diagnosable condition, and it’s called somatic symptom disorder or hypochondriasis, this only leads to more frustration and upset, often causing a sufferer to become even more focused on health. This would be the time to seek the help of a psychotherapist, but I’m afraid that rarely occurs.

  Hypochondria is found in 4 to 9 percent of the population, a figure that had been stable across studies for decades prior to the introduction and widespread use of the Internet. The condition appears equally among women and men, and seems to run in families, either due to a genetic predisposition for the disorder or behavior learned from their home environment. Like most individuals with these types of disorders, and not surprisingly, the hypochondriac experiences a wide range of emotional difficulties in life—often having trouble with impulsiveness, neurotic tendencies, and hyper-self-consciousness. There is usually an accompanying anxiety disorder or depression.