Living with pain: Hunting for health online
Millions of Americans live in almost constant pain, tormented by arthritis, chronic fatigue syndrome, lupus, irritable bowel syndrome, shingles, a bad back, fibromyalgia, migraines, and more. In spite of the huge variety of their illnesses, these patients have much in common, according to a survey released this past summer by the American Pain Foundation. Just over half feel they have little or no control over their pain, and more than threequarters say they need new options.
One place to search for those options is the online world. But while the Web can offer the therapy of community--the knowledge that you are not alone, and tips from people suffering in similar ways--it can also hold misinformation. How can pain patients tell the good from the bad?
What can be good and powerful about the Web is the community people find there. Many patients, such as this person posting in the "Untreated Pain" online community, are frustrated by their doctors: "Hi. My name is Shana, I'm married with 3 kidlets, 1 grandkidlet. ... I sound like a hypochondriac to anyone around me ... and it's like pulling teeth to get any kind of pain meds from my doctors at the clinic here." Talking to others who experience intractable pain is itself a tonic, according to Kristianne Sunde, the resource coordinator for the American Chronic Pain Association.
The online world offers information on treatments, too, and that information may not be objective or complete. For instance, a Web search for pain treatment might lead someone to aspirin and morphine, to physical therapy, surgery, and other options. But the site is run by Medtronic, a medical device maker--and only the material on medical devices contains such enthusiastic comments as "proven, effective treatment alternatives when other pain treatments provide unsatisfactory relief." Medtronic makes two devices, a drug pump and an electrical nerve stimulator, and the site links to them. This is a responsible company. But its site might entice a patient to push for a Medtronic device, despite the company's cautions to consult a doctor about all options.
So how can you weigh whether you're getting good information? Check four criteria. First, who sponsors the site? Consider whether the person or organization has a stake in your taking any particular advice. Second, how current is the information? Medical knowledge grows and changes, so a recent publication or revision date is key. Third, can the source of the info be traced, and can the material be easily identified as fact or opinion? And fourth, is the site comprehensible by a general audience or are the discussions highly technical? These checks, according to the Medical Library Association, can keep you from getting biased information or advice that's just plain wrong. One strike shouldn't necessarily knock a site out: Not all commercial sites (.com) are bad, for example, and not all not-for-profits (.org) are good. But good sites will certainly have up-to-date information, and should tell you the source of that information so you can dig deeper if you want to. And if the language is too technical, it can lead to misunderstandings. That confusion just makes an alreadypainful situation worse.