[published: January 14, 2009]
Confessions of a Cyberchondriac
A Wi-Fi-wielding hypochondriac with the common cold is a terror to both hospital and home.
If it’s not GERD, then it’s viral labyrinthitis; if it’s not benign paroxysmal positional vertigo, then it’s allergic rhinitis; if not global laxity then candidiasis; if not mandibular tori, it’s gastroenteritis; if not ocular migraine, then it’s UTI, if not pityriasis rosea, it’s stye, if not streptococcus, then it’s tonsillitis, bronchitis, laryngitis, shoulder bursitis, conjunctivitis, shingles, TMD, beefed up adenoids, paresthesia, deviated septum, or pinched sciatica. Add to this list of non-life threatening albeit irksome disorders that I’ve actually had at some point during the past few years, the following that I’ve diagnosed myself with and haven’t had (yet): MS, Meniere’s disease, odontogenic tumors, cardiac arrest, mitral valve prolapse, Ehlers-Danlos syndrome, and meningitis to name a few. I have what one might have called hysteria a century ago, but thanks to advances in technology and cultural sensitivity, I have cyberchondria today. And it is surely the most dangerous of all my afflictions. For a Wi-Fi-wielding hypochondriac with the common cold is a terror to both hospital and home indeed.
Cyberchondria was first coined in the late 90s to describe the tendency to adopt worst-case scenarios while researching health issues online. The literature on the disorder has recently grown to include the results of its first systematic appraisal, a study undertaken by Ryen White and Eric Horvitz at Microsoft Research, which defines cyberchondria as “the unfounded escalation of concerns about common symptomatology, based on the review of search results and literature on the Web.”
The study goes on to charge that it is how we search the web, not the use of the web for medical advice in general, which has increased the prevalence of this disorder. Rather than consult a professionally maintained medical site like Merck, Mayo Clinic or WebMD when sick, most people use the web as a diagnostic tool, and simply enter symptoms into a search engine. The results are skewed by page rankings and recent Google caches, which preserve truly terrifying disease support forums. According to the study, typing “headache” into a search engine is just as likely to pull up caffeine withdrawal as it is brain tumor. In reality your odds of being diagnosed with a brain tumor are 1 in 10,000, but dehydration, tension or really needing that latte are not necessarily the results that drum up page views and hyperlinks.
To search for information on muscle twitches online, another example used in the study, opens one up to paroxysms of a psychological sort, given that half the websites returned will make some mention of a debilitating neurological disorder. That leg tremor is not an innocuous caffeine induced twitch, or benign tick common in the general population, but ALS, otherwise known as Lou Gehrig’s disease, making an early introduction. The term fasciculation has ruined many a life; just type it into the search bar, read the related results, and see if you don’t start noticing the errant tremble.
I’ve had to navigate the treachery of the message board minefield myself. A year ago, a bout of vertigo led me to sites where sufferers begged for long-term labyrinthitis relief. I came to my physician armed with anecdotal evidence suggesting that I was in for a lifetime’s worth of motion sickness. My doctor informed me that my vertiginous plight was most likely due to an inflammatory disorder affecting the vestibular organs of my inner ear (aha, just as my research suggested), or could be related to a benign condition wherein calcium carbonate crystals called otoconia, normally found in my utricle, were jostled out of place and were now wreaking havoc in some other chamber of my inner ear’s semicircular canal. I was to carry out a series of exercises called the Epley Maneuver three times a day in order to clear the canal of crystals and regain my sense of equilibrium. He claimed that both problems were self-limiting however, and that either would probably resolve itself within weeks or months, even without the physical therapy. “Months?! According to derangedlabyrinth@aol.com if I have this condition more than two weeks, I will have it forever,” I told him. It eventually cleared up.
My own case of cyberchondria may be the natural outgrowth of a generally pessimistic outlook combined with a crappy immune system and too much access to high-speed internet. However it may have just as easily developed as an adaptation. I didn’t have insurance for years, and approached healthcare with a DIY ethos better suited to crafting. To avoid the medical system and its attendant costs, I even performed minor surgery on myself: I’ve removed questionable moles, dug deep metal shards from my feet with an Exacto blade, pressed the flip-top heads of my fingertips back on bloody, when they were ripped off by a windowpane, then applied a butterfly stitch. I’ve refused an ambulance when I had chest pains, and have probably visited every free and low-income health clinic in NYC.
Bad experiences with said clinics and medical schools further cemented my reliance on the web for fixes. Sure, the NYU College of Dentistry operates on a sliding scale, but after waiting for eight hours you may find yourself in the chair while a first-year smears dental bonding all over your front teeth and a passing teacher yells “what the hell are you doing?!” Two hours of elaborate chiseling may follow. The Red Hook Health Center will treat you for $25 but the receptionist won’t sugarcoat how maimed those styes have left you. A hearty “holy shit!” might suffice as greeting. And all I can say about time spent with Ob/Gyn interns is just, why?
So it was to the online hive I turned for assistance. And, for the most part I found it a font of useful tips: Cranberry juice can stave off that nascent UTI, and sometimes you don’t have stomach cancer — you just need Gas-X. While it’s true that one must be careful to avoid certain homeopathic pratfalls, like oil-pulling for one (don’t say I didn’t warn you), trolling the internet like a truffle pig in search of rarities below the epidermis does have its plus sides. I’ve become extremely adept at identifying disorders on shows like Mystery Diagnosis before the first commercial break. That poor woman wracked with pelvic pain, dizziness, and heavy periods? Endometriosis, duh. Why did it take 20 years and an hour-long special to figure that out? The woman with gigantic legs? You’ve got Proteus syndrome. And don’t get me started on the woman with chronic sinusitis—you have a knife in your head!
Even now that I have insurance it’s difficult to kick the symptom-searching habit. To make up for time lost, I visit my general practitioner often; and I’m the first to suggest an illness when there’s a break in conversation, even if he’s just pausing to inhale.
Physicians are increasingly forced to contend with patients like me, although I’m hardly the worst out there. I may come prepared with a checklist of disorders that I expect my physician to seriously entertain, but I don’t exaggerate or downplay symptoms in support of my theories. I have yet to request blood work, MRIs, or CAT Scans for my hunches, but a perusal of online cyberchrondriac haunts suggests that I am perhaps the only one to avoid such excesses and costly procedures.
For this reason alone, some of the Microsoft study’s closing recommendations for navigational web design features seem like good ones. Suggestions include introducing specialized ranking algorithms that would return more probable causes for symptoms before the sensational ones. Another is to have the search engine assume some sort of diagnostic mode when a medical search is detected; this mode would prompt the searcher to enter risk factors like age, weight, gender etc. in addition to their symptoms before the page links to further information. Until then, however, perhaps it’s best to stay away from those message boards no matter how tantalizing their siren call. After all, sometimes a tick is just a tick—until you drop dead from it, that is.
Nicole Whelan is a writer and musician who lives in Brooklyn. Her last piece for Last Exit was New Jack City in Issue 4.
Copyright Last Exit 2009
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Robert · Jan 16, 06:12 AM ·#