Thursday, December 4, 2008

Medical web searches lead to 'cyberchondria'

Cyberchondria -- leaping to dire conclusions while researching health questions on line -- is attracting increased attention.

Last Monday, Microsoft researchers published results of a study of health-related searches on its search engine and a survey of the company’s employees. The results confirmed that self-diagnosis on the Web leads searchers to conclude the worst.

“The researchers said they had undertaken the study as part of an effort to add features to Microsoft’s search service that could make it more of an adviser and less of a blind information retrieval tool,” The New York Times reported on Nov. 25.

The long-term goal is creating search engines that could detect medical queries and offer advice that did not automatically make searchers fear the worst, according to the story. In the age of too much information, that certainly sounds like a good idea. In the meantime, if you are going to search, a woman interviewed for a USA Today story had a good idea. In addition to checking out her symptoms (in this case anemia) she also searched for "anemia and benign conditions" so that she could have a balance of information.

If you do end up being diagnosed with a serious condition, the Internet can help you research treatment options and find the best doctor to treat you. After everything is in place, you might want to follow the advice of my doctor at the Dana-Farber Cancer Institute: STAY OFF THE INTERNET.

Through writing this blog, I already know more than I’d like to know. For example, when writing about my bouts with CMV, or cytomegalovirus, which affects people whose immune systems are weakened, I looked it up and found that in the worst-case scenarios, it can lead to disease and death. When caught early, however, it produces few if any symptoms, and they test for it early before it gets full blown.

Of course if you are prone to hypochondria, you don’t need the Internet to give yourself the worst diagnosis. Medical school students are known to have “medical schoolitis,” diagnosing themselves with every disease they learn about. Newspaper reporters like myself are also vulnerable. We write a lot of hard luck health stories, some with happy endings, others to benefit a cause. Then we worry that the disease of the day will pounce on us or on our loved ones.

I’ve always been a bit of a hypochondriac. A headache meant a brain tumor, and my sensitive stomach signaled stomach cancer. Then as a reporter I found new things to worry about. Once I wrote about an adorable toddler being treated for leukemia. Her mother said she became worried when her daughter developed small black and blue marks all over her body; these turned out to be a sign of low platelets caused by leukemia.

This was around the same time that Katie was learning to ride a bike. With each tumble, she developed another black and blue mark on her legs. I called the pediatrician. A nurse asked me if the marks were all over her body, and I said no, just on her legs. She said that if it was serious, the marks would be all over her body, but I could bring her in if I was worried. I let it go when I saw that each new mark corresponded to a new fall. By the way, the nurse told me that lots of parents called with the same question about bruises and leukemia.

When it came to my own diagnosis many years later with leukemia, I wasn’t a big Internet user, so I wouldn’t have looked up my symptoms. In any case, there wasn’t much to look up. I don’t think I would have found much if I did a search for “fatigue during a 10-K road race,” which was my only symptom.

I did know enough to feel that something wasn’t right, so I called my doctor the day after the race. He had a cancellation two days later, and when I saw him he did bloodwork “just to be sure.”

Not even two weeks after that, I was in the hospital. I had been diagnosed early enough so that I was otherwise in good health. Bottom line: If you really think something is wrong, call your doctor.


Susan C said...

I hadn't heard that new word - cyberchondria.

I was never a hypochondriac before cancer. As a matter of fact, I was the opposite. (What's the opposite of hypochondriac?) My philosophy was that 75% of complaints just take of themselves without medical intervention.

Not any more. I am so in tune with my body and make note (literally - I keep a symptoms diary) of every little change. Now THAT sounds sick. : )

susiegb said...

Funny you should talk about 'cyberchondria', and being a hypachondriac. I certainly used to be one, and I also would think a headache that lasted for more than a day or so was inevitably a brain tumour, etc etc. The amount of time and worry I have wasted over what turned out to be nothing ... !

But, oddly enough, when I did actually get cancer, that seemed to change. This whole positive outlook came over me. Nowadays it's like - well, I've actually had what I was always terrified of and (relatively speaking!), it wasn't as bad as I'd imagined.

I do look stuff up on the web - but seem able to selectively ignore things that highlight the worse case scenario. I know that most stuff on the web about the type of NHL I have (mantle cell) was written years ago and treatment/survival rates have changed hugely since then.

One of the best things about the web and having a serious illness I think, is the support people can get from others who have the same thing, either via discussion boards or blogs (like this one!) I'm sure that has revolutionised people's experiences and the isolation one can feel ... :)

PJ said...

I have always been a worst-case- scenario person. Imagined illnesses NEVER materialized, but I was nevertheless prepared. Ironically, leukemia blind-sided me.

Would the opposite of hypochondria be hyperchondria? I wish I could say I'm there.

Diane said...

Always good to check back in with your various posts (been so busy with work I haven't had time to read them lately).

I totally agree about staying off the internet. There is too much information and each case is unique enough that you can't really use it effectively and it just becomes overwhelming.

Stay focused on what your professional team at DFCI tells you and leave it at that. You are in the best hands possible.

Anonymous said...

I love it! I agree 100% to go with your gut. Nobody knows what your body feels like inside other than you. I too had a gut feeling something was "off"- oh yeah try a spleen 5 times it should have been and a WBC of 300K!
Great post, I really enjoyed it.

Jay Goldman said...

Hi Ronni - I just want you to know that I think about you often, don't have anything profound to say, but want only the best outcomes for you. Was out in Brooklyn tonight taking in a play that utilized Neil Young's songs to mark scene transitions. You kept coming to mind. Not sure why. Please tell Madison that I have a beautiful, 9 year old chubby Chocolate Lab named Lucy. When you're ready for company, Lucy would like to meet Madison. - Jay G.

Nelle said...

When my son got leukemia I went to the medical library at the nearest college (Rutgers) and read everything possible. I actually asked his doctor if he could have certain drugs that he had not yet used. My son was his first patient to try a new antianusea drug zofran. He then began to use it on all his patients. I am the kind of person who wants to know as much information as possible. While I would not diagnose myself via the internet, once diagnosed I would do all the research. My son's doctor told me I had times I drove him crazy but that he was impressed at the efforts I made to have some input. Having had low counts and my spleen removed I think I have a very mild hypochondria but others don't feel I do. Perhaps I hide it well. LOL