I might have gone to the doctor the first day I worried over the patch of skin on my ankle. Then, it was the size of a pencil eraser, now its silhouette looks more like a squished pea. It's not like the dark, irregular moles we're told to watch over and talk to our doctors about. It's scaly, and turns red when the rest of me tans.
Instead, I let the blemish worry me. Typing at my desk, my mind drifts to it, wondering whether the ache in my ankle is caused by the skin lesion -- surely a bad sign -- or from something else. I check by poking the blemish with my finger, and rubbing hard as if trying to erase it. There it is.
Surely making an appointment with my GP would be preferable to this. I could go to the doctor, show him the inside of my ankle, and let him tell me it's nothing. Unless, of course, he doesn't. I'll have to be prepared for that. I should find out for myself what this scaly red thing is. When the others have gone home from work, I stay at my computer.
But before I can Google "basal squamous cell carcinoma," I recall the warnings from dozens of doctors and newspaper articles. They bear cautionary tales of the "cyberchondriac" -- some person, usually a woman, who became convinced she had a bogus affliction because she'd read about it online.
So if I search for my own symptoms -- which I know are real -- am I falling prey to the same naïveté? Or am I taking control of my own health?
Despite expert advice not to surf for a diagnosis, millions of Canadians are.
Studies show that nearly a third of Canadian Internet users are trolling for health information, as are more than 60 per cent of American users. One of the top health websites, WebMD.com, gets 162,000 Canadian users in a month who average more than 15 minutes there. Of the 174 support groups cached on the Google search-engine, nearly 150 are health-related. These people aren't just getting information on their doctor-approved health problems -- they're self-diagnosing.
Some go on-line because they crave control. Like me with my ankle, these people haven't been to the doctor yet, but want to pile up research as protection against whatever they might encounter when they do. For others, it's a last resort. They have tried everything the system will give them -- GPs, specialists, examinations, diagnostic tests -- and are desperate for answers about what ails them.
Either way, they've abandoned the traditional model of healthcare where patients are passive and doctors know all. And despite the warnings, they're not turning back.
Surfing for answers
For Jay Fiddler, the breaking point came when two GPs, two rheumatologists and dozens of diagnostic tests couldn't tell her what was wrong.
Before she got sick, Jay was a vibrant 29-year-old who taught nurses, dentists and other health professionals how to handle patients with HIV/AIDS for AIDS Vancouver.
She went rock-climbing and worked out regularly. But by the fall of 1999, her joints were so inflamed she could barely walk. Her hair was falling out, she had itchy rashes twice a day and lymph nodes the size of tennis balls.
The first doctor told her not to worry. "You're being hysterical," she told Jay, "you just have allergies." The doctor gave her Claritin and told her to get some rest. The next doctor thought she might have late-stage syphilis or AIDS. "She ran every test you could imagine. Hundreds of them," Jay recalls. All were negative. Jay was referred to an oncologist, who removed a lymph node from her right underarm to test for cancer. The skin on her leg was biopsied for the rash.
Still, no one could tell her why she was sick. The pain and swelling were so bad she couldn't keep working. She had lost 30 pounds, and couldn't keep food down. She left her union job with AIDS Vancouver and moved back to Saskatchewan where her parents live.
For three months, her father stayed home from work to nurse Jay and help her figure out what she had. With Jay mostly stuck on the couch, she and her father searched the Internet using her symptoms and the results of the doctors' tests. They entered "rash" "fever" "twice daily" and "high ferritin" as search terms. Hundreds of sites popped up; many mentioned Still's Disease, a rare form of rheumatoid arthritis.
Jay posted her symptoms on a discussion group at www.stillsdisease.org and the responses brought hope that she'd soon have answers. "People were writing back and saying, 'that's exactly what I went through,'" says Jay. "It's so hard when you don't have a diagnosis -- I was beginning to think I was going crazy."
The biggest blessing with online information is that anyone can post information. If Jay only had access to sites from major organizations, such as the Arthritis Society, she would never have heard about Still's Disease. The condition is so rare - affecting only 1 in 700,000 people -- the society doesn't even include it on their site. By finding other sites, she was able to talk to people who said they had the disease, and compare her symptoms to the ones they reported.
But then the biggest curse of online information is that anyone can post information. That means anyone seeking health information has to wade through a marshland of con artists and rumour mills. If it's not commercial interests pushing bad advice, it's an anonymous poster who's just plain wrong.
"How can the average person know how to evaluate that?" asks Arminée Kazanjian, a University of B.C. professor at the Centre for Health Services and Policy Research. (For tips on finding good sites, see "Surfing Lessons" below.)
Kazanjian recently completed a case study on the quality of osteoporosis information available on specific websites. Osteoporosis is a condition that often affects women after menopause. Their bones lose density, become brittle and are more likely to break. The best way to avoid osteoporosis is a healthy, active lifestyle and good genes. But there are large sums of money to be made by convincing women to manage their risk of osteoporosis, and Kazanjian found many websites that promoted costly -- and dangerous -- interventions.
Some sites, for instance, told women to ask their doctor for a bone mineral density (BMD) test, but failed to say that BMD results have almost no bearing on whether the woman will get osteoporosis or break a bone. Other sites recommend Hormone Replacement Therapy (HRT) to prevent the disease. No mention of evidence that HRT increases a woman's chance of breast cancer and heart disease, or widespread calls to take the drug off the market.
"Many sites look quite respectable and authoritative," says Kazanjian, "but some were just elaborate ads for the companies that market these products."
So the Internet has some 21st century snake-oil salesmen. If I do look up my ankle problem, I could find useful answers or a pile of prattle. The real question is: when I do go to the doctor, should I abandon my information for expert opinion?
"I think that attitude is a bit patronizing," says Anne Rochon Ford, a consumer advocate and executive of the Canadian Women's Health Network.
Rochon Ford says the "don't do anything without consulting an expert" adage is something doctors -- and journalists -- have to tell patients for legal reasons. But she says that in some cases patients who have done careful research may know more about their condition than the doctor does. "Nobody is more interested in it than they are," she says.
That's especially true for rare conditions, like Jay's. She had been reading about Still's Disease for three months, but none of her doctors had ever seen someone with it before. When she told a rheumatologist what she'd been finding on the Internet, he had to look up the disease. She wasn't scolded for doing her own sleuthing, but the doctor did tell her she was wrong.
Jay's face turns sour as she remembers his words. "Your rash is itchy -- Still's Disease isn't," she recalls him telling her. "And it's salmon coloured -- yours is pink." A second rheumatologist said the same thing; they'd looked up the disease in the same book.
Motivated to learn
Kazanjian says it's impossible for doctors to keep up with every rare condition and new development in their field. "There is no time in the day for continuing education," says Kazanjian. "For a doctor to keep informed about his practice, he'd need to read 16 or 17 journal papers a day," she says. A concerned patient, on the other hand, will make time to learn why he or she is sick.
"In many cases, the same information doctors have is available on the Internet," says Kazanjian. But online sites can also give people information that doctors don't have -- like the experiences of other patients.
Getting health advice from average people isn't new -- or limited to the Internet. When I got chickenpox as a kid, I pooled anti-scratch information from my friends who had already had the disease. Internet chat-rooms are similar, but the community can be composed of people from anywhere. At alt.support.cancer.breast, women ask whether anyone else had refused chemotherapy, and share tips on avoiding nausea.
At stillsdisease.org, Jay found that -- contrary to her doctors' books -- many other people with Still's say they do have itchy rashes. Convinced by her research and desperate after months in pain without a diagnosis, Jay applied for an appointment at the Mayo Clinic, a world-renowned American medical research centre. They agreed to see her, and she travelled with her dad to Rochester, Minnesota for a four-day visit.
Jay was in the doctor's office for 10 minutes when the doctor said, "I think you have Still's Disease," and prescribed a course of treatment. The visit cost $22,000.
I can't handle fretting over the patch on my ankle any more. I go online, and search for "skin cancer" and "types." It isn't long before I find descriptions of every kind with snapshots. I scan down the page: not that one, too dark; not that one, too bumpy. My stomach churns as I see a photo that matches the scaly patch on my ankle. Basal squamous cell carcinoma: a slow growing but potentially deadly form of sun-induced skin cancer. I put a band-aid on the patch to protect it from more exposure. Four more months of worry, and I make an appointment with my doctor.
Rewriting the manual
When the patient comes to a doctor's appointment with his or her own answers, a power shift is inevitable. But doctors have been struggling with this new relationship for years before the Internet spread.
One of the first groups of patients that infringed on physicians' territory was the Persons with AIDS Coalition, a group of gay men with the disease that came together in San Francisco in 1982. Hundreds had already died of what was called "Gay-Related Immunity Disease" and they were fed up with waiting for medicine to help them. The group started by offering survival hints and information on new treatments, and turned into a community-based research project where a couple of sympathetic doctors helped the men find and test promising -- but not yet approved -- new treatments.
Kazanjian says patient involvement in decision-making is now so prevalent it has a name: disease "co-management." "We have always looked at physicians as the highest authority of health care," says Kazanjian. "Now, people want to work with a physician to co-manage their problems, especially for chronic disease: cancer, diabetes, AIDS."
Even the language of medical journals has changed, says Kazanjian. "I don't see the word 'compliance' as much anymore -- suggesting that the patient has not followed orders," she says. "These lines are softening now."
Doctors are slowly coming around. Marrion Fuller of the Canadian Medical Association -- the national lobby group for doctors -- says the CMA doesn't advise patients one way or the other about seeking their own information on the Internet. "But we think they should share the information with their physician so he or she knows what the patient is looking at," says Fuller.
The CMA predicts the health care of the future will involve even greater patient involvement, with a diminishing role for doctors. A 2000 report projected the most likely future as one where self-care -- including the use of online information -- will be the rule, not the exception.
Rochon Ford sees no reason why patients who are able to research their own ailments shouldn't do so. "We have doctors on an unreasonably high pedastal," she says. "They have information some of us need, and skills we don't have…. That doesn't mean we can't educate ourselves."
Medical students lagging
If co-management is the health care of the future, now would be the time to start telling medical students about it. But Ashok Krishnamurthy, a UBC med student and resident at two Victoria hospitals, says his class wasn't taught how to handle Internet-surfing patients. "The subject came up from time to time in group discussions," he says, "but we never learned anything specific about it."
Rochon Ford says the main thing doctors need is a willingness to consider their patients' ideas. "Good physicians also learn from their patients," she says.
Jay's story might have been different if the four doctors stumped by her illness had listened. The Mayo Clinic diagnosis meant her research had been right after all.
"I was mad," says Jay. But she counts herself lucky that her family was able to help her pay for the trip and research the illness. "I'm convinced that if I hadn't gone down there I would still be sick."
Now, the glow has returned to her freckled cheeks and on good days she can still go to the gym. She's not free of the disease: she walks with a limp, and has to begin medicating herself at 4:30 a.m. to get to school by 9. After her weekly methatrexate injection, she has to stay in bed all day to recover from the nausea. But with treatment, Jay was able to leave the couch and move back to Vancouver to get her Masters degree and start a PhD doing research for Canadian Blood Services.
Me? A cyberchondriac?
I tell my doctor I've been worrying about a patch on my ankle, and show it to him. "It seems to match the…" I stop myself. I saw the pictures and read the descriptions; I'm pretty sure my concern is valid. But am loathe to be admonished or lumped in with the cyberchondriacs.
The doctor smiles, and urges me to continue. "What do you think it is?" he asks. I said -- I admit it -- I'd been checking websites and it looks like the scaly red patches of basal squamous cell carcinoma.
He takes a closer look. I'd been fearing this moment since I first noticed the patch. I'd imagined him saying "Send her to chemo!" or "We'll have to amputate at the knee." Instead, he says, "Might be…in a few years."
"Might be?" I ask. He tells me that most people get spots like that and they are caused by sun. Some will turn cancerous, others won't. The best thing I can do is know it's there, protect it from sun, and keep track of the shape and colour. "Let me know if anything changes," he said. "And we'll freeze it off."
Watching I can do. It's a relief to stop worrying whether cells from that spot of skin had already spread silently throughout my body. Maybe I should have had it checked out a little earlier. But if I hadn't gone to the doctor armed with information, I probably wouldn't have gone at all.
Stamp of approval: Start your search with a clearinghouse of pre-approved sites. They're limited in the topics covered, but all links have been checked to see if they're accurate and helpful. Here's a few to try:
• Canadian Health Network (Health Canada) www.canadian-health-network.ca
• Canadian Women's Health Network www.cwhn.ca
• Healthfinder (U.S. Health & Human Services) www.healthfinder.gov
When you're looking for information on a site, make sure to check who funds it and chooses the content. If the site is reputable, this information shouldn't be hard to find. Sites run by companies will often contain some useful information, says Kazanjian. But readers should know where it's coming from.
Be very skeptical of sites that promote specific brand-name drugs, says Rochon Ford. The promotion may be obvious (in the form of an advertisement) or more subtly placed in an article. Either way, it's there for the company to make money -- not for you to get information. Often, the drugs they advertise are still under patent, and a less expensive generic drug may be available.
Readers should also be wary of sites that use emotional tactics to coerce people into certain methods of treatment. Look for sites that offer evidence to back up their claims. Also, balance is key -- you want to see the pros and cons of a treatment, not a persuasive testimonial.
Lisa Johnson specializes in health and science writing. She has reported for CBC Radio, the Georgia Straight, and UBC's Thunderbird and currently works for CBC in Nelson.
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