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Part I: How do you know where to start looking?
The blood tests are done, the x rays taken, the docs have weighed in, and a diagnosis has been made. In some ways it is a relief: you have an answer as to why you haven’t been feeling well. But. . . now what? What does this diagnosis mean for the next few months? Years? More tests? More procedures? Is your family at risk for this condition? Can you go on vacation next month? All these questions have the pesky habit of not coming to mind in the doctor’s office but much later when the only resource available is your closest search engine.
When you first get a medical diagnosis even if your provider is saying it’s “routine” you can feel as if your life has been upended. You now have to live with that diagnosis of diabetes/ high blood pressure/ high cholesterol/ gallstones, or a cancer. The starting point is not letting this diagnosis define you. You have dreams and goals for your future: what are they? Do you want to be sure you can keep up with your grandchildren? Are you determined to enjoy things like the occasional cigar or nice glass of wine? Do you want to simply be able to eat a good meal without running off to the bathroom? By knowing WHAT you want you might be able to limit the flood of information that would come up if you typed in something like “diabetes” into the search bar.
Being extremely specific about what you are looking for helps you to focus your energy on useful information. Medical diagnoses can be frustratingly broad like “diabetes mellitus” or “fatty liver.” When you put those terms into a search engine you could end up down a rabbit hole at the extremes of your disease process. Know what tests brought you to this diagnosis. Was it one lab value? One ultrasound test? Multiple tests over a long period of time? This will also help you filter out what is actually applicable to your own personal condition.
The internet can be an overwhelming flood of information. By creating these small channels you can control the stream of medical information without drowning. I highly recommend my patients write down questions as they come up. Sometimes I have had patients with a color-coded lists that they go through methodically. There are sometimes whole websites devoted to a particular issue that I am able to direct them to. In my next series I will speak more about reliable web sources and how to find them.