21st: Six clicks from death

When you're facing a strange new illness, the wealth of medical information online can help. It can also drive you crazy.


Cynthia Joyce
May 24, 1997 11:00PM (UTC)

I woke up one morning last fall and the entire right side of my face felt like it had been injected with Novocain. I ran to the mirror to see what was going on and attempted a series of Jim Carrey impersonations to work the numbness out of my face. The left side went along willingly, but the right side stared back at me, unblinking and totally expressionless.

By the time I made it to work, it had gotten worse. The right side of my face now looked like a fallen souffli, and the right half of my tongue felt like rubber. I tried to downplay how scared I was, offering lame little jokes like, "Is this what they mean by 'self-effacing'?" My jokes didn't have the desired effect of putting my co-workers at ease, because by now my speech was so slurred I sounded drunk. By mid-afternoon, the right side of my face was completely paralyzed -- yet, oddly, my hearing on that side was amplified. I felt like a cross between a stroke victim and the Bionic Woman.

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My doctor took one look at me and, ruling out the possibility of a stroke (rare for healthy 27-year-olds), diagnosed me with Bell's palsy -- a typically temporary condition resulting from damage to the seventh cranial nerve. He said no one knows what causes this damage, but most people fully recover in four to six weeks. He didn't tell me what happens to the other people, and I didn't ask. Although I understood that I was probably going to look like Bill the Cat for at least a month, I was relieved that my doctor didn't seem overly concerned. As I went to fill his prescription for steroids, I vowed to keep busy, stay away from mirrors for a while and learn everything I could about my syndrome.

As it turned out, staring at my distorted reflection would prove to be far less threatening a pastime than staring into the kaleidoscope of information on the Web.

The first thing I did when I returned to work the next morning was search the Web for information on Bell's palsy -- beginning a series of self-misdiagnoses that did more lasting damage than the palsy itself. Because I didn't know where to find reliable health information, I started with a general search on Alta Vista. The first article that turned up was a Healthgate document from the National Library of Medicine's Medline database titled "Management of Bell's palsy." I read the abstract: "The natural history of Bell's palsy is favorable. Eighty-four percent show satisfactory recovery without any treatment, however 16 percent suffer moderate to severe sequelae."

Sequelae? Good God, what could that be? I'd never heard of it before. I quickly did a new search on "sequelae." My heart was beating in my ears as I waited for the search results. I tried to picture what sequelae might look like. I imagined myself in scarf and gloves, trying to conceal the sequelae that covered my neck and hands. I pictured friends and co-workers recoiling in horror as sequelae spewed from my right ear. I wondered if sequelae was contagious -- would I have to be quarantined?

The sequelae search results finally appeared, barely staving off my hysteria. I clicked on an article from the Journal of Clinical Oncology titled "Late Psycho-Social Sequelae in Hodgkin's Disease Survivors: A French Population-Based Case-Control Study." Of course, I'd never suffered from Hodgkin's Disease, but it didn't matter. My line of reasoning went something like this: The incidence of sequelae in French populations must be pretty high to merit a control study being based in it. My mother's side of the family is French. As far as I was concerned, this constituted conclusive data. But I was forced to admit I was probably off-track when I calmed down enough to notice that the dreaded "s" word wasn't even mentioned in the conclusion.

I went back to the original search and followed the second entry, titled simply "Sequelae." It read: "Sequelae ... may include persistent hypesthesia and dysesthesia, persistent motor weakness, infection, amputation and death. These are the direct result of nerve and muscle injury." The various -thesias didn't mean anything to me, but seeing the words "nerve damage" and "amputation and death" so close together within the same paragraph threw me into a panic.

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And it didn't end there. By the time I finally bothered to look up "sequelae" in Webster's and found that it means only "something that follows," I had diagnosed myself with a brain tumor, encephalitis, Lyme disease and two different strains of the herpes virus. Whatever Web page I started from, I never seemed to be more than six clicks from a death sentence.

As my doctor predicted, I recovered fully within four weeks. He didn't tell me about the 16 percent who never recover or suffer the dreaded "sequelae" of recurring paralysis, because he correctly assumed I'd automatically count myself among them. And since Bell's palsy may be linked to stress, he wisely decided not to give me cause for more. Nonetheless, during those four weeks, I think I found every single one of those 16 percent online.

Although I didn't know it at the time, it's safe to assume that because Bell's palsy usually goes away after several weeks, the people posting in online support groups like the Neurology Web Forum represented a disproportionate segment of those Bell's palsy sufferers whose symptoms never faded. I certainly had no reason to distrust their accounts -- but lots of reasons why I didn't need to hear them just then. Still, I opened every one of those links, and needless to say, with subject heads like "SCARED," "10 years later ..." and "BELL'S STRIKES AGAIN," the stories only added to my hysteria.

Clearly, of course, people with serious illnesses -- particularly those who have been properly diagnosed -- can greatly benefit from online support groups. Dr. Allison Szapary, a resident at the University of California at San Francisco, believes that although younger residents like herself typically use medical databases like Medline "every day, all day," online support groups are far more useful for patients than such data-heavy sites. "I think the Web is better for offering emotional support than for actually giving good factual information," she says. "For people going through serious illnesses, it's important for them to feel connected to others going through the same thing."

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One reason it's so useful, especially for people with chronic or degenerative illnesses, is that people can describe even their most embarrassing health problems without having to look someone in the eye -- and in such situations, unlike in other kinds of Web conferences, the anonymity actually encourages more honesty.

As a cancer survivor, health writer and producer for the popular Ask Dr. Weil alternative medicine site, Steven Petrow knows first-hand both the advantages and dangers of online medical resources.

"When I researched medical libraries like the University of Pennsylvania site, I wound up with more information than I knew how to interpret. When I went to my doctor I was a mess -- I thought I was going to die," he says. "I've been a health writer for more than 10 years, and when I read a study, I have to read all the footnotes very carefully, and sometimes I still don't understand. So you can only assume your average consumer would be confused some of the time."

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Several sites, such as Reuters Health, offer information under two separate categories for consumers and professionals to help alleviate this problem. Patients still have access to medical research, but can get it in layman's terms. Without that option, Petrow points out, having all the latest info "doesn't cure your problems -- it could actually create new ones."

The editors of the Journal of the American Medical Association attempted to address some of these issues in an April 16 editorial in which they warned that "health care professionals and patients alike should view with equal parts delight and concern the exponential growth of ... the Web as a medical information delivery tool. Delight because the Internet hosts a large number of high-quality medical resources and poses seemingly endless opportunities to inform, teach, and connect professionals and patients alike. Concern because the fulfillment of that promise remains discouragingly distant."

Part of the problem with the Web, they argue, is that "science and snake oil may not always look all that different on the Net." Petrow agrees that the unregulated proliferation of health information sites on the Web makes it easier for consumers to be duped, especially by sites promoting alternative medicine.

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"I think it's easier to scam people online," he says. "Some of us are hoping there will be some kind of oversight in terms of fraud on the Web, because right now there isn't. With print magazines, at least you have to have 'advertisement' written on the page if it's an ad. It's hard for someone to tell what's legitimate or not, and part of the problem is when fraud is actually being committed, you don't have an actual physical location where someone could be prosecuted. The consumer law needs to evolve to a national level that incorporates the Web."

The authors of the JAMA editorial take a different view. They argue that because the Web is a global and decentralized medium, government regulation isn't the answer. Instead, they favor a standard set of guidelines for authorship, attribution, disclosure and currency that online resources wishing to establish their reliability would adopt. "Web publishers of all stripes -- ourselves included -- should be free to post whatever they like and live with the consequences. Let a thousand flowers bloom. We just want those cruising the information superhighway to be able to tell them from the weeds."

But as my doctor, Jesse Dohemann, points out, even by-the-book science can start to smell like snake oil if the doctor-patient relationship is eroded. "I had a guy in here recently who had horrible hives, so I sent him to all the top allergists, and no one could figure out what it was," Dohemann recalls. "He got in touch with a doctor from New York online who prescribed him medication normally used to treat people with Parkinson's disease. The hives did get better, but the guy was now taking a combination of drugs that would have crippled him within 10 years. This doctor may have been a real M.D., but he was also a ding-dong."

As the rise of the HMO has put greater emphasis on primary and preventive health care, alternative medical information like that provided by Ask Dr. Weil has become a growth industry. And the kind of general advice to people such sites provide -- watch less news, eat more broccoli -- would probably keep them out of legal trouble, even without the prominently displayed liability disclaimer, a standard feature of most sites offering free health advice.

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But the "free" part of that equation may soon come to an end for the online services of more traditional medical institutions. Because many health-related sites offer interactive elements -- like the "Internist's Casebook," which lets you play medical detective -- their mix of straight advice and "infotainment" allows them to rely on advertising revenue. But sites that cater more to health-care professionals, like Medscape, Medline and the Mayo Clinic, may soon be forced to charge subscription fees. "I think the love affair with free information is going to be coming to an end," Petrow predicts. "And the question seems to be, you pay for this type of information now, why wouldn't you have to pay for it on the Web?"

Looking back on my experience with Bell's palsy, it wasn't all a nightmare -- in retrospect, it even seems pretty funny. And I did, in the end, discover an entire range of health resources, as well as develop a great new pastime -- albeit a rather obsessive one.

For a while there, I was researching my every sneeze online. I no longer needed a Physician's Desk Reference to tell me which drugs I couldn't take with alcohol -- I could look it up at PharmInfoNet. I could find out everything I never wanted to know about the freckles on my shoulders, my receding hairline and why I get leg cramps. I even found an interactive ovulation site -- one of my personal favorites -- featuring the "What-If Ovulation Calendar." Believe me, figuring out the last day of your menstrual cycle has never been so much fun.

But as my experience showed, too much information can sometimes be a real health hazard. So do the Web a favor: If you've ever suffered a debilitating, embarrassing or long-lasting illness and been lucky enough to live to tell about it, then please do. You may not cure anyone of whatever ails them, but you just might keep them from going crazy.

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Cynthia Joyce

Cynthia Joyce has been a writer, editor and Web producer for 20 years. A former Arts and Entertainment editor for Salon, she lives in Oxford, Mississippi, and teaches journalism at the University of Mississippi.

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