Doctor's Orders: Don't Look!
Most likely we have all been there – we’re sitting in the office with our doctor and are told, "Now, don’t go looking on the internet for answers because what you find will be wrong/scary/too much" (pick one or fill in your own choice). Of course, it is only human nature that the very first thing we are going to do immediately after leaving that appointment is head to someplace with a computer and search the internet for details. I’ve been known to not even wait that long and can be found in the parking lot on my smart phone looking for more information.
Why do we seek more information on the internet?
Why do we pay good money and spend our time to see the doctor but yet we don’t follow their instructions regarding information-seeking? Free will? Stubbornness? For me, the internet is a resource that is just too tempting to resist. I understand the doctor’s concern – I’ve counseled many a person newly diagnosed with MS who has read the worst-case scenarios on line and jumped to the conclusion they would be in a wheelchair in a short time or some fate even worse. Their perception was based on the things they found on the internet.
The dangers of self-diagnosis
I’ve also heard in online patient chatrooms from countless people who had experienced balance problems, numbness, or vertigo and immediately checked their symptoms online and found MS was one of the possible ailments. They write in a panic, positive that they have our disease and their life is doomed. The information they found may have been accurate, but it didn’t necessarily pertain to them and their own medical condition.
My relationship with Dr. Google
Don’t get me wrong – I use the web extensively for information-seeking and have a very close-up and personal relationship with Dr. Google from years of use, but I have also taken the time to learn about the types of information I can find and how to choose legitimate websites for my information.
Why do doctors tell us to avoid searching MS information online?
A few years back, I would have believed that physicians resisted their patients’ search of the web for information because it would undermine their authority in the exam room. With the opening of the internet, we were suddenly given access to information that previously was limited to people attending an institute of higher learning. The internet helped to create a patient movement that puts us at the center of our care.
Harmful false information
Now the concerns I hear more often from medical personnel is there is so much crap out there – erroneous information, especially talk about cures and treatments that aren’t legitimate. Doctors want us to learn more about our condition, but they want us to learn what is true and accurate. I often hear the phrase “snake oil” and how they want to save their patients from financial harm, too.
It takes a lot of time and energy for the doctors to talk us out of the misguided belief that something we may have found on the internet is going to be good for us and our MS.
Misleading medical websites
As of late there have been a lot of new medical sites show up on the web – they can be about MS or they can be about any other disease. I often see them because of targeted ads that show up on my Facebook page that direct me to the new sites. Often, their information is wrong and other times, it is just a direct copying (plagiarism) from the writings of the many of us blogging about MS or other legitimate sources. There is a lot of money to be made on the web by getting people to visit websites to either collect our ‘likes,' buy something, or expose our computer to spam or malware. Lisa Emrich recently wrote a brilliant educational piece for MultipleSclerosis.net on this problem and I hope you take the time to read the results of her many hours of research in Buyer Beware: Influx of Suspicious Websites.
Be wise about where you look
When you want to learn more about multiple sclerosis, there is absolutely nothing wrong with looking on the internet, but be wise about where you look. The information here at MultipleSclerosis.net and that found at the major advocacy sites such as http://mymsaa.org, run by the Multiple Sclerosis Association of America, have been fact-checked and verified for accuracy. There are other advocacy organizations that also have great online resources for our use.
Finding the right resources
It seems to be human nature that we will want to look where we’ve been told not to peek and that presents a new challenge for today’s doctors. In place of telling us to not look, the medical professionals should provide directions as to where we can find trusted information. William Osler, a Canadian doctor and one of the founders of Johns Hopkins Hospital wrote “The good physician treats the disease; the great physician treats the patient who has the disease.” To which I would add, the best physician guides the patient where and how to learn more about their disease.
Wishing you well,
Do you celebrate your MS Anniversary?