Cyberchondria: How the Internet Is Making Us Paranoid About Health

Carlos was accustomed to dealing with stress and deadlines. As a systems engineer he lived a life of details and constant interruptions, but this new project seemed to be pushing him to the edge of his patience. The headaches started a few weeks earlier and were affecting his ability to concentrate on his work. At times he felt that the pressure behind his eyes would push them out of their sockets.

Carlos decided to take a short break from his work and he entered "headaches" into his computer's search engine. In less than a second it found over 34 million hits, providing him with more information than he could ever read, so he decided to open a few of the more familiar-looking sites.

After 10-15 minutes he found himself searching "brain tumors" and being confronted with another 4 million sites. What impressed him most was that there were some very bad brain tumors that could kill him in less than a year. As his throat tightened and his heart started to race, he decided to head home and do a little more online "research" into what was certainly a serious problem.

At first glance you might think that Carlos was overreacting and that you would never respond in such an illogical fashion. Think again. The Pew Internet and American Life Project reported that 80 percent of all American Internet users, or 113 million people, searched for health-related information in a single year. The Internet is a terrific source of valuable health information, but the study revealed that the individuals using it did not discriminate as to the quality of the sites they visited or the great variation that exists from one site to another. Like Carlos, they could put in a common symptom and come up with a serious illness.

Cyberchondria

Just about everyone is familiar with the term hypochondriac, a condition that has existed for as long as man has been aware of the relationship between symptoms and illness. Famous hypochondriacs have included Adolf Hitler, Tennessee Williams and Howard Hughes.

Hypochondriasis is the fear of a serious illness that continues despite the reassurance of physicians and testing. These fears and anxieties about illness may become debilitating and interfere with daily life. In the past people, would go from doctor to doctor seeking an answer, but now many people never see a physician and rely solely upon online information. For hypochondriacs and the "worried well," the Internet is fertile ground to escalate their concerns. This interaction of excessive anxiety brought on by the use of online health information has been coined "cyberchondria."

How Does It Happen?

In 2008, Microsoft published the results of a large study that looked at how people search the Internet for health related information. They looked at 40 million page samples for three common symptoms -- headaches, muscle twitches and chest pain. What they found was that search engines, unlike physicians, do not understand "diagnostic reasoning" and therefore do not discriminate between common benign disorders and less common serious problems.

The ranking and appearance on a search page is not in the order of how likely it is to be that individual's problem. A physician will consider many variables such as a person's age, past history, associated medical problems and symptoms, while factoring in the level of anxiety, depression or other emotional problems. The Internet is impersonal and does not currently take these other factors into account.

An Internet search for a common symptom like headaches would over represent serious problems. While migraine and tension headaches are much more common than a brain tumor, an online search can take one down the same path that Carlos traveled.

The Microsoft study confirmed that searching can lead to an escalation of symptoms and become a transformation of benign symptoms into concerns about more serious illnesses. A person's anxiety over his headaches leads to an Internet search that takes him to a discussion of brain tumors. Both the search and the anxiety can escalate as the person spends more time searching for information about brain tumors.

The focus is now on more serious conditions and the person has been diverted from the much more common and probable diagnosis of migraine. By the time Carlos arrives at his doctor's office, a stack of search printouts under his arm, he will demand an MRI scan and additional testing to allay his fears of a brain tumor.

Refining Search Engines

A better understanding of medical anxiety caused by the Internet, should lead to better search engines. The Microsoft study concluded that, "Beyond the potential problems with the quality of medical content ... we believe that Cyberchondria is based more centrally on intrinsic problems with the implicit use of Web search as a diagnostic engine."

In their study, 75 percent of the people surveyed had at least once interpreted the ranking of web search results as indicating the likelihood of a disease. Benign muscle twitches quickly become Lou Gehrig's disease and the person's anxiety escalates as quickly as the search engine spits out new results.

Laymen and even physicians will ignore the "base rate" or low probability of a rare disorder and may immediately assume that their symptoms are due to a serious condition, ignoring the very low probability. The large amount of information on the Internet about serious and rare illnesses can make that information readily available to laymen to interpret without the benefit of medical advice.

What Should You Do?

• Become an informed user of search engines and be aware that the ranking on the page does not necessarily correlate with the quality of the information or the frequency of the disease.
• Ask yourself, "how much time do I spend searching health related materials and looking for a diagnosis?" You may be a cyberchondriac.
• If you find yourself stuck in a search of serious or rare diseases -- stop searching and get a medical opinion.
• The Internet is a source of a great deal of useful information, but many times it is best to use the Internet in partnership with your physician.
• Talk with your physician and tell her what is making you anxious, but be willing to accept that it may be something simple or something for which there is no clear cut explanation.

Finally, I see many patients who I tell, "Your symptoms fall in a category I call 'life's unexplained events' and we will just have to wait for awhile and see what happens." Sometimes, not giving symptoms a name is better than embracing the wrong diagnosis that you found on the Internet.

For more information go to: www.richardsenelick.com

 

 

 

Follow Richard C. Senelick, M.D. on Twitter: www.twitter.com/RichardSenelick

Comments

[toxicshock]

11:07 AM on 05/29/2011

Another major problem is ignorant people with their anecdotes: "My sister had that, and she was later diagnosed with cancer! You must have cancer!" All because someone had similar symptoms does not mean that it will apply to everyone else! Stop being Dr. Google and go see a real one!

[Capt Kirk]

01:48 PM on 05/15/2011

I've got a news flash: the Internet is feeding paranoia about a lot more than health issues! In fact, the Internet is essentially a giant paranoia machine, very effectively reinforcing the misconceptions and false information that foster paranoia, fear and hatred across wide spectrum of topics. Maybe it's time to log off.

[mcc1cam]

10:07 PM on 05/14/2011

I am definitely headed into the cyberchondria zone. It doesn't help that in both doctor's and dentist's offices there are signs everywhere for WEB,MD! I recently had to go to an ENT specialist, and at my follow-up exam, armed with my CT scans, he didn't have time to explain what the problem was, instead he told me to Google the letters LPR (as a writer, he said, I should be great at research), told me to go to a gastroenterologist, and that was that! I used the Internet all right, I went to my online banking site, and cancelled my co-pay check!

[briandanairb]

05:33 PM on 05/14/2011

I have on 4 occasions over the last few years informed my Doctors, one a specialist, about new medications for my illness that they weren't aware of.
I also asked them about some treatments and testing they'd never heard of, all from information I got from the internet and in each case it was a positive outcome both for me and them. Yes one shouldn't right out believe everything the internet says on health, but it has very useful and accurate information as long as you get second and third opinions. But one shouldn't just believe what their Doctor says about their health either, especially if something is telling you more is at hand. Get a second or third opinion ALWAYS!

[briandanairb]

05:21 PM on 05/14/2011

There is a reason that a Doctors business is called a 'Practice' that's because even though they are highly educated in medicine, they don't know everything. Yes it's ignorant to rely on the internet completely for medical information, but it is very useful in many ways medically, I stay in sites that are related to hospitals or known research institutions. It's a good idea not to take one doctors word on something, If your inner voice is nudging you that something worse is wrong even if your Doctor is reassuring you there's not, go see at least one more Doctor. I mean we are told to get 3 estimates when doing business so why not do the same for your health. The world is full of people that will attest to the fact that they spent years suffering because their Doctor said don't worry it's nothing, only to find out from another Doctor later that something worse was happening, sometimes too late to help. Yes it's bad to believe the internet up front but it's also wrong to think a Doctor in Practice is always right.

[WileyKeeton]

09:35 PM on 05/13/2011

The internet doesn't make me paranoid about my health, it makes me paranoid about my doctors.

[Cher L]

05:47 PM on 05/14/2011

You are so right! I double check everything they tell me if I am concerned. And thanks to the internet I have discovered on more than one occassion that a medication I was given had a base of a drug I am highly allergic to. Even tho the chart is marked 'Allergic!" she still make that mistake twice.

[sumogirl]

04:51 PM on 05/12/2011

I'd like to see more physicians use the internet to keep up their knowledge of newer treatments and research studies for illnesses that don't quite fit into the norm. I switched doctors because I thought mine was lazy and not up to date on treatments. I'm much happier now with a doctor who isn't intimidated by the internet and doesn't treat me like I'm crazy for asking about various symptoms. I think it can be hard to avoid self diagnosis, but usually common sense takes over. Ultimately, I think it boils down to whether one trusts his physician.

[RMankovitz]

11:51 AM on 05/12/2011

From my reading of this article, the message is: the average consumer is not competent to discriminate correctly concerning online health information, and must ultimately yield to the all-knowing medical practitioner. The likely result of doing otherwise is to be labeled a “hypochondriac”, defined in DSM IV as a mental disorder.

While we are on the subject of labels, the mainstream medical community appears to have earned its very own: “the number one leading cause of death in the U.S.” For details, see:

http://www.whale.to/a/null9.html#ABSTRACT

The article implies you’re more likely than not to be misinformed if you research health issues online. There certainly are tons of wrong health information on the web, whether intentional or unintentional, and some of it comes from BigPharma pushing Frankendrugs.

Here are some other possibilities from online health research:

You now know much more about your condition than your doc; you know when you have been misdiagnosed/misprescribed; you know that you have not received informed consent; and you are now empowered to take charge of your own health.

Finally, we are given the ultimate advice to patients: "Your symptoms fall in a category I call 'life's unexplained events' “

To me, this is bumper-speak for “I have no clue what is wrong with you (and I am sure nobody else does), therefore I will make up something to appease you.

Roy Mankovitz, Director
http://www.MontecitoWellness.com
A research organization

[Vinny123]

08:55 AM on 05/12/2011

According to the Institute of Medicine, approximately 200,000 people die yearly due to medical errors and only G-D knows if these figures are higher because there is under reporting of such events in hosptials and by physicians. Although the majority of physicians are well intended, their treatment recommendations may need to be questioned, not to engage in argument or debate, but to ensure that one is obtaining the appropriate diagnosis and treatment for their medical condition that does not do more harm than good! To be able to have this dialogue with one's physician, the patient needs to be informed and due to the fact that many physicians do not do a very good or complete job of informing patients of their medical conditions or their treatment, it is in the patients best interests to educate him/herself by conducting their own internet searches pertaining to their medical conditions and evidenced-based treament interventions.

Although there is always the risk of becoming alarmed by some of the information one finds on certain sites, indicating symptoms and diseases that are malignant and not applicable, if scrutinized appropriately, these sites can provide significant amounts of information that can assist a patient in making informed decisions that can significantly impact on the outcome of their treatment.

[PCL07]

01:50 AM on 05/12/2011

Did ya ever think that the internet is easier than going somewhere that charges too much or doesn't accept people with no health insurance? Plus, when you do see your doc, more often than not, they're prescribing more pills. Perhaps a more in depth analysis in a socio-political scheme can bring a better article about learning about healthcare without incurring massive costs, but thanks for the heads up.

[itsnoteasybeingblue-n-tx]

11:48 PM on 05/11/2011

If people had access to affordable medical care they could share their concerns with a doctor instead of a message board.

[Vinny123]

10:10 PM on 05/11/2011

If used appropriately, implying being able to sort through and negating superfluous and questionable medical websites, a layperson can obtain extremely relevant and valuable medical data pertaining to state of the art diagnostic and treatment modalities for specific medical conditions, that can mean the difference between experiencing a positive versus a negative treatment outcome. There are in fact credible medical databases, physician directories and ratings, and moderated medical chatrooms covering the spectrum of myriad medical conditions, that can inform and guide patients in finding the most effective evidenced-based treatment modalities as well as locating medical specialists which can optimize their treatment outcomes.

As in all professions, there are the good, bad and ugly, and the medical profession is no different. Medical diagnosis and treatment can range from horrific to outstanding. Although many physicians do not like to be questioned by their patients or to be provided with novel information regarding a treatment modality that the patient observed in an article or on TV, resulting in their being labeled "problematic", "neurotic" or worse, the fact is that there are a significant number of physicians who are not up-to-date regarding the latest treatment interventions resulting in the need of savvay patients keeping themselves informed of evidence-based, state of the art treatment treatment options. Such knowledge may make the difference between surviving a serious medical illness or succombing to it.

[Pauline Jaing]

08:59 PM on 05/11/2011

A doctor saved my life; I also have sleep apnea which was diagnosed by a doctor, so I certainly am for going to the doctor. However, these days, whether the doc likes it or not, s/he will spend no more than 15 minutes with you, even if you are in terrible pain, and prescribe something and/or give you a test.

I went to doctors, got acupuncture, went to a chiropractor, for very painful cramping in my legs when I woke up in the morning. I Googled the symptoms and home remedy sites, and tried various natural remedies. Finally, on one forum they advised to take 3 magnesium tablets before bed. I would try anything natural, and I could not believe my fortune when it worked.! That was several years ago!

Google "health effects of ____________" for vinegar, epsom salts, baking soda, etc. and you will find a treasure trove of home remedies that actually work.

[CelebrityDx]

05:19 PM on 05/11/2011

We recommend the book "How Doctors Think" by our colleague Dr. Jerome Groopman at Beth Israel Deaconess Medical Center in Boston.
We've also pointed out that health information which the U.S. Government provides is, unfortunately, hard to find, often redundant and not well-aligned with the top 12 health topics of interest to consumers.
http://www.medpagetoday.com/Blogs/22332

[jmills616]

04:42 PM on 05/11/2011

"The Internet is a source of a great deal of useful information, but many times it is best to use the Internet in partnership with your physician."

"Talk with your physician and tell her what is making you anxious, but be willing to accept that it may be something simple or something for which there is no clear cut explanation."

By all means give this very generalized advice a try, however, the bottomline is don't rely on anyone but yourself. The average doctor isn't interested in listening to anything you have to say and will just nod their heads and smirk projecting the illustion of concern and understanding. If your'e disiplined enough to take the many hours and sometimes weeks pouring over information, learning the lingo and becoming informed then your'e one in many thousands of humans. You'll likely be better for it. If on the other hand your'e too far immersed into "the system" and at the same time too over worked, lazy and not very disiplined your likely to be on the downward spiral into a life of illness and disease with the help of "well credentialed" authorities more than happy to write a prescription for whatever ills you.

[sumogirl]

05:36 PM on 05/12/2011

Thank you! My 97 year old father was a diabetic and developed terrible bedsores on both heels while hospitalized for two weeks. His physician and 2 expert colleagues affiliated with the hospital recommended amputation ASAP just above one knee. To my family, that was a death sentence (and I found two articles online which supported that). Thanks to his nurse/caregiver, we were referred to another hospital with a wound care center. The doctors there advised us not to amputate but worked on his wounds weekly while we carefully followed their instructions at home. Dad recovered and was with us for another year before he passed from natural causes. Doctors aren't used to being questioned about their treatment and their egos sometimes get in the way. I'd like to give my dad's physician the benefit of the doubt because he had no idea of how determined we were to keep my dad out of the hospital, alive and in one piece. IMO, the more informed we are as patients, the better the treatment.