The first thing many people seem to do when they get a diagnosis of a physical or mental illness is to go to the internet and search on that illness. Patients who are prescribed medications do the same. Often the search results lead to internet forums. These forums consist of user-generated content that usually is not moderated or edited by any professional. Anyone can post on these forums. This seems reasonable, right? But in this article, I’m going to tell you why, for the most part, you should avoid reading these forums. And I will also tell you why you should be skeptical of Google search results regarding any illness.
When people read on forums about their illness or medication, they get scared. Many of the forum posts will say that your illness leads to awful and dire outcomes and that the medications prescribed to you will make you depressed, addicted, or crazy.
For instance, I often treat tinnitus patients. Samplings of the forums that cover tinnitus suggest that most of the people who post on these forums are completely miserable and suffering terribly from their tinnitus.
So what’s the problem here? Isn’t this useful information? Can’t patients learn something interesting and helpful from these forums?
Unfortunately, Internet illness forums often present a distorted, grim, and negative impression of most illnesses and most medications. Why is this? The main reason is because of selection and sampling bias. The groups of people who post on illness forums are not a representative sample of people with a particular illness. Let’s use tinnitus as an example. If you read the tinnitus forums you would assume that everybody with tinnitus is anxious and depressed about it.
But actually, we know from research studies that roughly 20% to 40% of the population experience tinnitus symptoms from time to time. We also know that roughly 2% of people who have tinnitus symptoms suffer psychologically. So the data from research suggests that a small subset (2%) of people who have tinnitus symptoms suffer anxiety and depression as a result of their tinnitus. Most people (98%) with tinnitus symptoms do not suffer significantly or they have adapted over time and gotten over their suffering.
But the forums are full of posts from the people who suffer the most. People who don’t suffer don’t spend their time posting. And people who have overcome their suffering also don’t post. So reading the forums gives a tinnitus patient a distorted and scary view of the experience of tinnitus.
The other problem in reading internet information about illnesses is the way that Google Search ranks and orders search results. When you search on tinnitus, what you might not realize is that Google presents pages in order of popularity, not in order based on how accurate or scientific they are. Sites that are clicked on more frequently will rise up in the Google search results and sites that are clicked on less frequently will fall down. When you do a Google search people typically click on the most shocking and scary links. “Tinnitus caused by alien abduction” will get a lot of clicks even though it may represent a site run by a single person who claims to have been abducted by aliens. Thus the alien abduction tinnitus site will move up in the Google rankings.
Boring scientific sites fall down in the search rankings. That’s because they have scientific names that don’t encourage people to click on the links.
So how can patients get accurate information about their illness or about medication treatments?
One way is to search within scientific and medical sites. For instance, Medscape is an excellent website that offers medical articles about almost every illness. WebMD is another site more designed for lay people, which also offers good information. If you want to search scientific articles you can use the PubMed search engine which searches published research articles.
Let’s do a Google search on tinnitus. Overall, the 1st page of Google results is pretty representative of medical and scientific sites. But the 3rd listing titled “In the news”, is an article “Martin McGuinness tells of misery living with tinnitus,” from the Belfast Telegraph. Pretty grim, you think, misery!
But if you actually clicked through to the article you would get a very different impression because what Martin McGuinness actually says is that tinnitus “had a limited impact on day-to-day life and work and that family, friends and work colleagues were very supportive. It does not limit me in a professional or personal capacity.” This is a much more positive view than suggested by the title and the Google link.
This is a great example of why the Internet is dangerous. The headline is what’s called clickbait, a link that falsely represents the actual page, which is designed to attract people’s clicks.
Forums about medication are also problematic. Many psychiatric medications can have side effects. For most people, these side effects are minimal or tolerable and are overbalanced by the benefits of the medications. For a minority of patients, the side effects are not minimal and these are the patients who are over-represented in most Internet medication forums. Also, on an Internet forum you never really know all of the medications the person is taking, the accurate dosages, as well as their underlying illness.
There is one more problem with reading about illnesses on the Internet. It’s one that particularly disturbs me. Many websites, even websites that purport to be objective, actually are selling something. They may be selling a supplement or vitamin, or an e-book or some other kind of program to treat an illness. Obviously, to increase sales, these commercial websites will paint a distorted negative picture of any illness or condition. They may also disparage other more traditional and scientifically validated treatments or drugs. In general, you should be skeptical of any information that comes from a website that sells products or services.
- Take Google search results with many grains of salt. Remember that Google orders search results by popularity not by accuracy.
- Beware of Internet illness and medication forums. By and large, they are populated with an unrepresentative sample of illness sufferers, the ones who suffer the most and cope the least well. Reading them will depress you and make you anxious.
- If you want to get information about your illness or potential treatments, consider using established and reputable medical and psychological information sites. An exhaustive list of best medical sites can be found at the Consumer and Patient Health Information Site. Some of the good medical sites include Medscape, WebMD, and MayoClinic. Some of the best sites for mental health information include PsychCentral, NIMH, American Psychiatry Association, American Psychology Association.
- Finally, remember that a very large percentage of websites are actually selling something, and be skeptical of information from these sites.
In conclusion, suffering any illness or condition is unpleasant and sometimes scary. Don’t make it worse by consuming information on the Internet in a random way. Be skeptical and selective and remember that Google is not always your friend. Often a good physician or good psychologist can give you clear and balanced information.