I Spent Two Months as a Cyberchondriac
When hypochondriacs flock online, a community of the truly sick helps them find comfort
A year ago, around Christmas, I noticed a red rash on my right breast. I was nursing my six-month-old, who liked to sink his fingernails into the flesh of my breast as he ate. On this occasion, he had left a series of tiny cuts, like paper cuts, but they quickly grew red and itchy, and the patch spread. I thought the cuts were infected, and then I wondered if I had been bitten by bedbugs or fleas.
Predictably enough, I Googled “itchy red rash on breast.” The first result, boxed off in an authoritative square at the top of the page, was inflammatory breast cancer (IBC), an extremely aggressive form of breast cancer that presented unusually — rather than the characteristic lump detected by feeling or mammogram, IBC flares up as a sudden rash, usually hot to the touch, and sometimes accompanied by a dimpling that resembles the skin of an orange.
When I saw this result, I felt a flush of chill power through me, as if I’d been injected with ice water. Every result on the page was about IBC. I was only 36; wasn’t this too young? I Googled more. I read the blog of a 30-year-old woman diagnosed with IBC, the mother (like me) of two small sons. The last blog entry was written by her husband and contained her obituary.
Also on the first page of Google results was a breast cancer forum, a place for breast cancer patients to meet virtually to discuss treatments and side effects, to celebrate small victories like chemo that doesn’t cause hair loss, or large victories like the triumphant declaration of NED (No Evidence of Disease). I clicked on the forum and scrolled through the thread titles: “Could it be IBC?” “If not IBC…then what’s going on?” “Worried sick!”
I had found my people.
My favorite joke about hypochondria goes like this: A woman walks into her doctor’s office for the third time in as many weeks. The doctor looks at her and says, “Ma’am, I’m afraid you have hypochondria.” “Shit,” replies the woman. “That, too?”
Hypochondria is a specific kind of neurosis that is still mostly seen as funny in our culture — or, if not exactly funny, then entertaining because of its quirkiness: Charles Darwin’s detailed records of his own farts, for example, or Howard Hughes’ wild germ phobia, which prompted his transformation into a glove-wearing recluse. But if Darwin and Hughes had access to the internet, studies suggest that their hypochondria would have been much, much worse. For most of the eight out of 10 Americans who use the internet to help them figure out their ailments, knowledge is relief; we might learn, for example, that we don’t need to rush to the ER for a 103-degree fever, or that the tingling in our hand is probably a sign that we slept funny and not multiple sclerosis. But for about 38 percent of us, using the internet to research medical information escalates our worry, tipping us from a normal level of concern into health anxiety. Psychologists have developed a term for this: cyberchondria.
Cyberchondria has been the subject of scientific and academic study for at least the past decade, but most of the information we have focuses on how problematic internet use negatively affects sufferers of health anxiety, rather than how the anxious person might affect others. Dr. Thomas Fergus, an expert on cyberchondria who teaches in the Psychology and Neuroscience Department at Baylor University, acknowledges this: “To date, much of the research on health anxiety has been in isolation from others,” he says, “rather than in relation to others.” What little research there is tends to focus on the way people view hypochondriacs. “Others may view an individual constantly expressing health concerns negatively (e.g., frustrating, fragile, needy, difficult to reassure) and may ultimately withdraw support from that individual,” Fergus says. This makes people who suffer from health anxiety particularly prone to isolation and alienation. They feel that no one takes them seriously. They feel unheard. In a way, then, when I began spotting others with health anxiety on illness message boards, this made a kind of perfect, if unfortunate, sense. If no one else could reassure us, perhaps ill people would.
Until I got the rash and learned about IBC, I would never have described myself as a hypochondriac. But anxiety — and the strain it put on those around me — was nothing new. I was diagnosed with an anxiety disorder just a few months after moving to New York City, fresh out of college. This was in September 2002, one year after 9/11, when cable news stations ran chyrons alerting the nation to the current threat level for a terrorist attack. In the autumn of 2002, we hovered almost constantly at orange, just below red, the most dangerous. Each day, my new husband took the subway from our apartment in Queens into Manhattan or Brooklyn, depending on whether he was headed to his internships in art therapy or to graduate classes at NYU. The subway stations were full of National Guard soldiers, long guns slung over their shoulders, black boots. With regularity, the papers would report credible threats for an attack on the subway.
I developed an obsession with safety. When the papers — mostly the Post — blared that the subway was sure to be attacked imminently, I begged my husband to call in sick for work. When he (lovingly, rationally) refused, I asked him to call me the second he got off the subway train. I had timed the trip and knew how long it should take, so I would sit by the phone and wait, occasionally picking up and checking for a dial tone like a lovesick teen in an ’80s movie. If the allotted time came and I didn’t hear from him, I would start pacing. The longer the time passed, the harder it became to breathe. I kept the news on, waiting for an attack to be reported, certain I would see my husband’s sneakers poking up from beneath a sheet in some shaky aftermath footage. Some days — many days — I had to leave the apartment and walk the neighborhood, clutching my stomach and staggering past the bodegas and discount stores. Sometimes I wept. In New York, this probably made little impact on passersby, but even so, I couldn’t have cared less what I looked like. When I would make it back home, the answering machine would be flashing, my husband’s oblivious, cheerful voice: I made it to work. I’ll call you when I’m leaving! And then the cycle would begin again.
My husband and I had only been married a few months when I began having panic attacks, and he was patient beyond what anyone could expect from another human. He knelt beside me as I lay on the floor of a subway station, hyperventilating and close to fainting. He didn’t try to talk me out of sitting at the coffee shop next door to the building where he had class so I could wait for him, ensuring he wouldn’t have to walk alone at night. When he took a job at a store near our house, I would walk to meet him at closing, which was often midnight. This last, finally, tested his patience: me, peering anxiously into the windows of the store in the darkness, watching as he and his co-workers swept the floor, closed out the registers. I don’t know what he told the people he worked with about why I was there, but I know it embarrassed him. I recognized the tight, thin line of his mouth when he caught sight of me out the window.
So, 15 years after moving away from New York City, when I came down with the rash and fell into the dark fog of reading about IBC, I confided in my husband, but I understood, intellectually, the need to keep the depth of my fear to myself. We were parents now, with little time to talk outside the earshot of our children, and part of me didn’t want to let on how close I was to taking us back to the days when I was laying on the filthy floor of a Manhattan subway station. When our children were asleep, I would research, late into the night, becoming more and more convinced that my time with my family was limited, that something fast-moving and insidious was growing in my body. More than anything else, I lurked in the forums, pulled between reading the stories of those who had IBC, and those who, like me, were staring into the future, trying to make out what was coming.
When you click on the Inflammatory Breast Cancer homepage, the very first thread you’ll see is an announcement from the moderators called “Worried About IBC, But Not Diagnosed.” It’s such a common practice to have cyberchondriacs post on cancer forums that there are usually special threads devoted to those who want to ask questions about the disease before they know if they’re suffering from it. This announcement reminds seekers that the forum is “dedicated to our members who have been diagnosed with, are in treatment for, or have completed treatment for IBC.” It also notes that posting pictures is prohibited — originally this, too, was a common practice among those fearful of having IBC. It ends with a note reminding visitors to see their doctors if they are worried about symptoms.
People who suffer from health anxiety generally don’t have a problem seeing doctors — they usually go often, and may switch doctors, or see more than one at a time. (Some sufferers avoid doctors even when it’s obvious they need to go, but they are a minority.) The problem is not the doctors but the waiting: waiting to see a physician, waiting for test results, waiting for next steps. So when worriers post online, they usually include the caveat that they have made a doctor’s appointment but are driving themselves mad with worry in the meantime — a circumstance I understood well.
Over the past year, I’ve spent many hours on medical forums, especially cancer forums, and there are a few things that I’ve noticed again and again from the hypochondriacs’ posts. Perhaps the most notable is that someone always responds. And the people responding aren’t paid to do it or people who’ve gotten the all clear and then took on this role because they have energy to spare. They’re the ones who have cancer. We are not doctors, they say. Then: Don’t panic. This type is very rare. The symptoms you describe could be a wide range of things, most of them very common and easily treatable. Don’t worry, and please do keep us updated.
We talk a lot about emotional labor, the managing of our own or others’ emotions to accomplish some goal. A recent article in Slate argues that we are overusing the term, misusing it, to apply to any work we may do that we have feelings about (that is, most of it.) But Slate also acknowledges, “[W]hen there’s a partnership or friendship in which one person is the go-to emotional servant while the other disregards others’ feelings and well-being will-nilly, these people are rightfully called emotional vampires.” What about when the relationship is not a partnership or friendship, but two strangers in cyberspace? It seems horrible to me to burden those who have been diagnosed with an aggressive cancer with anxieties that will likely turn out to be nothing at all. Even amid the work of keeping themselves alive, they never ask each other if it should be their job to comfort the anxious. They just do.
And when the cyberchondriacs disappear from the forums, it’s likely because they are fine and have been diagnosed with something much more ordinary. Sometimes they make one final post with the good news of the all clear. How hard must it be to experience the naked relief of someone celebrating that they do not have the ailment you live with day in and day out? As Fergus says, “The individual suffering from the health problem may perceive that his/her experience is being minimized by the person experiencing heightened health anxiety posting about a possible health problem.” But Fergus also brings up an interesting theory that may explain why so many of the ill are so generous in their responses: The support they receive elsewhere on the forum may lessen any distress they feel when cyberchondriacs invade their space. The danger? Fergus says that if the distress that the ill feel while reassuring those with health anxiety outweighs the benefit of the online community, they may disengage altogether, which would obviously be a great loss. As I worried my way through a potential cancer diagnosis, I realized much of this intuitively — remembering how easily people with severe health anxiety can become emotional vampires — and I refrained from posting. Though only just.
In the end, I found a website called No More Panic, based in the UK and devoted to people who suffer from anxiety disorders. The most popular forum is called “Health Anxiety,” but there is also a separate one for symptoms. I recognize the shamelessness of the posters: They ask questions about anal discharge, about blood in their poo, about their toenails, about seeing sparks in their eyes when they take a shower. The mood on these boards is different from the cancer forums. In the cancer forums, there are gentle reminders; on the health anxiety boards, there is more tough love. Some of the posters there have been through cognitive behavioral therapy for their health anxiety and know that reassurance-seeking is a maladaptive behavior. When a “senior user” on the forum, who goes by the username Server Error, recently posted that he was worried he had MS because his toes were numb, another user reminded him, “Use your tools. It’s not something until they say it’s something. You know that.” Another user chided, “You know [your symptoms] can be anxiety because you see it in here in thread after thread every single day. How can such a logical person get fooled by something as illogical as HA [health anxiety]? Easy.” Server Error said that all his logic was pointing him toward MS. It would be illogical, he argued, for it to be anything else. “You’re spiraling,” one user warned.
Server Error’s thread turned out to be more than 200 posts long. Server Error, as it turned out, had gone off of his anti-anxiety medications. He made an appointment with a therapist and got sorted out with different medications. By the time of the thread’s last post, Server Error was upbeat. His symptoms had dissipated, and he had refused — to the applause of the forum’s users — his doctor’s offers of more testing.
I went to my doctor’s appointment around Valentine’s Day, having spent almost two months disoriented, exhausted, and disconnected from my family due to the sheer terror of believing I was dying. My diagnosis: thrush. Not cancer? I asked the doctor, incredulously. Thrush had been nowhere in my Google results. Not cancer, she said, not particularly kindly. After taking two doses of anti-fungal medications and applying a topical cream, my rash disappeared.
Soon after, I created a username and password and joined No More Panic. I found a post by a user afraid they had cancer. I clicked reply. The symptoms you describe could be a wide range of things, most of them very common and easily treatable, I wrote. Don’t worry, and please do keep us updated.