Last year, I was referred to two different dermatologists because I have two skin conditions and each dermatologist is an expert on one of them. (I know how fortunate I am to have access to this level of medical care.) Something amusing happened at each visit.
After examining me and deciding on a course of treatment, the first dermatologist said, “When you get home, don’t look up this condition on the Web because you’ll get too much information and you’ll become confused and scared.”
After examining me and deciding on a course of treatment, the second dermatologist said, “When you get home, look this condition up on the Web because you’ll want to learn everything you can about it.”
Argh! What’s a patient to do?
This patient looked up both conditions on the Web and learned all about them. I’ve been using the Internet for over ten years to research my illness and to connect with other people who are chronically ill and in pain. I’ve learned that one must tread carefully in this vast terrain. The breadth of information can be overwhelming. Some of it is accurate and highly useful, but some of it can be downright dangerous to rely on. Here are my tips for wise use of the Internet:
When researching your condition, look for .org or .edu as opposed to .com at the end of a Web address.
When you conduct a search for information on your condition, you’re likely to get millions of results. Start with websites that end in .org or .edu. The former take you to non-profit associations whose mission is to educate the public about your particular condition and to advocate on your behalf. An address ending in org. is not a guarantee that the site is reliable, so you’ll have to investigate further, but the .org usually means that it’s a non-profit, unlike most sites ending in .com. (An exception is mayoclinic.com, an excellent non-profit site. There are also several reliable .com sites that cover health issues in general, such as KevinMD.com, where you can find informative and thought-provoking articles from both healthcare providers and patients.)
Web addresses ending in .edu take you to medical sites that are maintained by universities. I’ve found them to be objective and reliable sources of information. As for sites ending in .gov, such as the NIH or the CDC, I think they’re a mixed bag. On the one hand, they’re non-profit, which is good. On the other hand, some of the agencies have fixed views on certain conditions and illnesses and so are slow to update information for the public, even when the latest research indicates they should be doing so.
Be wary of websites that claim to cure your chronic pain or illness if you’ll just fork over your money.
Anyone can create a website, set up a payment method, and ask for your credit card number. Anyone. Treatments-for-sale can be packaged to sound very seductive, but If there were a “cure” for your condition, the odds are high that those .org or .edu. websites would be recommending it or at least discussing it. In addition, be highly suspicious of “patient testimonials” because you have no way to verify their accuracy. They may simply be made up. Also watch out for phrases such as: “secret formula,” “what your doctor doesn’t want you to know,” “miracle,” “works overnight.” People are spending thousands of dollars on false cures. I know because I’ve done it. I was particularly vulnerable when I was first diagnosed because I was desperate, making me an easy target for miracle cures. Please be wary.
If you find an article on your condition, check out who authored it.
Make sure it’s not someone who gets paid money to get your attention. This group can include medical writers who are paid to produce “scare you to death” articles for popular blogs and news-type websites. Scary headlines, reports about bizarre (and invariably, rare) medical conditions, and deadly drug reactions bring in readers. No matter how impressive the author’s credentials look, before you rely on an article, look for a “second opinion.” See if what it claims has been reported elsewhere on the Internet by staff writers for reliable news organizations or by those .org associations.
Be cautious before relying on other people’s experiences with various treatments.
This brings me to the subject of the various types of online support groups: chat rooms, listserves, and patient forums or message boards. These can be valuable sources of information and support, particularly when you’re first diagnosed. But, as for looking at these websites for feedback on treatments, I’ve learned that for every prescription medication, dietary supplement, or alternative medicine modality I’ve tried, I can find people who say it worked, people who say it didn’t work, and people who say it made them worse. Speaking personally, I’ve stopped consulting these types of sites for feedback on treatments I’m undergoing, even though I know the people who are participating have the best of intentions.
About six years ago, under close doctor supervision, I was prescribed a powerful and potentially toxic anti-viral. I was told about potential side-effects and even had weekly blood tests to check for any problems. Nevertheless, after starting the medication, I spent hours every day hanging out on message boards and forums, reading posts from people about their reactions to this drug. After about three weeks, utterly spent—mentally and physically—from this relentless searching and exhausting reading, I forced myself to stop because I realized what I already knew: some people said it worked, some people said it didn’t work, and some people said it made them worse. The only new thing I learned was to be scared—scared of rare reactions that would have become apparent to me without the Internet and that I would have immediately called my doctor about anyway.
I can see exceptions to my personal rule. (I always taught my law students that all good rules have exceptions.) For example, if I were undergoing a widely-used, well-established treatment, such as chemotherapy, it could be helpful to check with other patients to see what to expect. There may be side-effects that my doctor, who might be focused on the big picture, wouldn’t mention, like deep fatigue and brain fog.
Find community and support on the Internet.
I’ve said this in earlier pieces: if one is to be sick, it’s fortunate to be sick in the Internet Age. This illness would be so much more difficult to live with if I couldn’t connect with others online who understand my struggles. Internet friends are the only source of support for many people. There are social networking sites like Facebook and Twitter, and there are blogs written by people who are similarly sick. In addition, there are online communities devoted to those with chronic pain or illness, such as Jenni Prokopy’s Chronic Babe, where members can create a personal page and then find others who share their medical problems or their non-health interests, such as music or photography.
In my experience, the Internet’s hidden treasure for those suffering from chronic pain and illness is the Facebook Group in which people can share in a private setting. Many people have told me that these Groups brought them out of the painful isolation they’d been forced into due to their medical problems.
And, finally … enter the doctor.
If you find information you want to take to your doctor, I suggest you put on your diplomat’s hat! If you challenge your doctor, he or she is likely to think, “I’ve had years and years of training and experience and this patient thinks the Internet has the answers!” Your goal is to make your doctor feel that you’re sharing this information because the two of you are partners in your healthcare. So, rather than starting the dialogue with something like this:
“My Internet research shows that…” or
“I found an article on the Internet that says…”
“Doctor, I found this study that I thought might interest you…” or
“I know a lot of your patients must bring you material to read from the Internet, but this particular article appears to be relevant to my condition and I’d love to get your feedback on it.”
You get the picture: The patient as diplomat!
The Internet’s greatest strength—you can find almost anything online—is its greatest weakness. That’s why I suggest treading carefully. Be a consumer not a patient. Consider the way you “research and compare” before making a big purchase. If you bring that same rigorous analysis to the Internet, this valuable resource can go a long way toward easing the burden of living with chronic pain and illness.
Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers. Her forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.