Monday, April 21, 2008

I'm not a Doctor, but I play one on the Internet


For years, I've discouraged people from scouring the Internet to find out everything they need to know about Lupus. While the web is a great resource, and I regularly visit medical websites, each time I do, I'm reminded of the generic, misleading and often erroneous information that's available online.

Seven years ago, one of the first things my pulmonologist instructed me to do was to avoid looking up Lupus on the Internet. He said I would be doing myself (and him) a favor, because the information I might find would be out of date, inapplicable to my particular case, or incorrect altogether. Since then, I've learned to search cautiously, but just the other day I found myself falling prey to the information overload that can so easily happen with Internet searches.

I was looking online for a link to accompany the mention of a medical term in one of my blog entries. I naively started clicking on the results of my generic Google search, only to find some very daunting and not-so-positive stuff. I'm not ignorant when it comes to the realities and risks of having Lupus, but I do find it overwhelming to have such an enormous amount of information, statistical data and research analysis so readily available. In fact, I stopped my generic search after reading one too many horror stories, and went right to a website I knew I could rely on (see my picks for good sites below).

This kind of thing happens with almost any medical condition you look up online. A girlfriend of mine, who is also pregnant, had some muscle pain in her upper thighs. She wanted to find out if it was a typical pregnancy symptom, so she looked it up online. One of her first findings: a woman who had experienced muscle soreness in her thighs, which then moved into her stomach and eventually led to a miscarriage. You can imagine my friend's dismay when she read this. She followed up with her doctor, who dispelled the leg pain/miscarriage connection completely. He attributed the pains to the typical aches of pregnancy, and the changes that a woman's body undergoes. It doesn't mean that the story online was false - it just shows how easy it is
to make a wrong deduction.

When possible, I've found it much more valuable to get my questions answered by someone who may know me or the specifics of my disease - a physician, a pharmacist, or someone from my Lupus support group. The information I receive is then tailored to my needs and specific to the questions I've posed; I don't have to wade through all of the extraneous (and frightening) information that doesn't apply to me.

I also find the pictures illustrating some of the medical conditions I look up particularly disturbing. I don't intentionally search under Google images for these things, either. They come out of nowhere, popping up on a web page before I have chance to divert my eyes.

For example, I know how silly I looked when I was suffering from angioedema: One 1/2 of my lower or upper lip would swell to three or four times its normal size. It wouldn't have been so bad if my entire lip had grown in size - I could have played it off as a tribute to Angelina Jolie or Lisa Rinna (seen at the left). But this 1/2 lip stuff was just unbearable. And it hurt, too. When I happened upon some very icky pictures online demonstrating angioedema, it only made things worse. It didn't confirm my diagnosis, and it didn't reassure me to see other people with the same thing. It just gave me the willies. Same goes for the delightful pictures showing Lupus rashes or hives. I even looked up poison ivy one summer, searching for a good over-the-counter remedy (which I found in Zanfel, by the way), and I ran across some very nasty looking cases of P.I. Yuck!

For the most part, I try and spare you from those pictures. Perhaps you can stomach them better than I can, but I figure it's better to assume that the pictures may be a little too much for you, too. If my links do have pictures, I try to make sure they are illustrations, rather than real-life photos (except those of Angelina and Lisa - I figured you could handle those lovely ladies!) Drawings of swollen lips I can handle. The real deal? I'll take a pass.

Of course, there are some very valuable websites online, and I encourage you to use them when you are looking for additional information. My favorite and most reliable Lupus site: Lupus Foundation of America. I also can usually trust Medline Plus, an NIH website, and the Mayo Clinic website. No matter what online resource you're using, though, be prepared to sift and filter through the information. Remember - it most likely doesn't all apply to you!

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