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Home » Articles » Cool Tools
Are you TRULY well-informed about your illness(es)? (In honor of National Fibromyalgia Awareness Day May 12)
by Jenni Prokopy, the Editrix
Are you well-read? Well-informed? Do you keep up on research? Read the latest journals?
If so, you probably know more than I do about your conditions. Maybe MY conditions!
In recent months, I've had a few opportunities to speak with folks about fibromyalgia, perhaps the most serious illness I live with. I always do my best to inform others (when they ask, and if it's appropriate) but sometimes I wonder if I really know enough. My conditions are well-controlled so I'm not trolling the web in search of treatments; I don't even read every email update that comes from the associations that represent my conditions.
So am I truly well-informed? Probably not, or at least, not as well as I want to be.
The fine line between "informed" and "obsessed"
In the early days after my fibromyalgia diagnosis, I spent hours and hours hunting for the latest research, magazine articles and web sites. The resources back then (1997!) were paltry (and that's being generous). For a couple years, I was obsessed with fibromyalgia, reading everything I could get my hands on.
I was also freaking out at every moment! All that research and reading was planting seeds of fear and doubt and confusion. Lots of the information was conflicting, out-of-date, or just plain scary—and I didn't have any reliable resources to calm my nerves or point me in the right direction. Instead of feeling informed, I felt overwhelmed and adrift.
Today: a different story
Things are much different today. I have reliable doctors who point me in the right direction and are very well-informed on the latest mediations, research and treatment options. The National Fibromyalgia Association (NFA) has wonderful resources including a magazine and a well-stocked web site. There are lots of great web sites built by health care organizations, doctors and even patients. And I (ahem) have a wonderful community of smart, savvy Babes around me when I need help.
But I could probably do better. Certainly, I should be reading those handy email alerts I get from the NFA and other health organizations. Considering this got me thinking about what ALL of us could do to be more informed, and eventually I came up with a list:
Start your research with reputable web sites
Before you start reading horror stories on someone's blog (that someone who you met at a support group, or your cousin, or whoever) try heading to a few reputable sites first. Start with WebMD, head over to the Mayo Clinic, check out HealthyWomen.org and MedlinePlus.
Join an association (or two) that serve your condition
I belong to the Arthritis Foundation, and American Chronic Pain Association and the National Fibromyalgia Association, and they all offer wonderful resources. Find the groups that fit your needs! And if they aren't offering everything you want, volunteer a little time and maybe you can help shape their efforts. You'll feel great about contributing, too!
Sign up for news from the Kaiser Family Foundation
This organization really knows their stuff. They have a wonderful collection of newsletters and alerts that can keep you up-to-date on a wide variety of issues. Sign up at their web site (and browse their copious resources, too).
Get fed! With a news feed, that is
Use a feed reader (like Google Feed Reader, for example) and subscribe to all your favorite web sites and blogs. It's a terrific way to aggregate all the news you want into one spot, which you can access from any computer.
Subscribe to magazines (so cheap!)
For the most part, they're cheap and you can get some great ideas. Browse your local bookstore or newsstand, or check out the lists at World-Newspapers.com, Yahoo Health Magazines and MagsDirect. For $20 or less you can get a year's worth of good info, and sometimes a free issue for a friend, too.
Read some (free!) medical journal articles
MedScape (a sister site of WebMD) is just one of a few sites (but I think it's the best) that offer free access to medical journal articles. Some reading is good; when you start taking journal articles to bed to read before sleep, you've got a problem. Use this information cautiously.
Keep developing a great relationship with your docs
I can't say enough about how important it is to have a good relationship with your doctor(s). The more comfortable you are, the more you'll trust her with questions and concerns; when she sees how informed you are, she'll feel more comfortable pointing you to additional resources...rinse and repeat.
Don't like your doc? Check out this free ebook, Finding Dr. Right, from Vitals.com. It's got terrific advice on finding a new health care provider.
Bottom line: there's nothing more valuable for information-gathering than the relationships you build with health care providers. Any new treatment or approach you read about and want to try should be discussed with your docs first, OK?
Posted: 5/7/2009 in Cool Tools
