I suppose the first time I appreciated the incentive to learn and accessibility of specialist medical information was watching the movie Lorenzo's Oil. But over the last three years, I've also come to understand more of what I need to know for my own specific medical condition.
People sometimes get a little impatient with me when I lapse into medical terminology in describing my own situation; but part of that is simply because as I become immersed in such information, I see the distinct advantages of precision that such language conveys to those who know the context for these terms. Over time, friends and family members are learning what I have discovered as well, thereby further facilitating some of our conversations.
But distinguishing what I need to know from what I don't need to know is not always easy. Some things which I have dismissed as purely routine, have turned around and bit me. One example is the use of products for cleaning around the PICC line insertion point, the barrier films used, the swab sticks, the wrap and gauze, and adhesives. Nobody told me that I would need to have this information readily available to answer question about skin sensitivities. But that is precisely what has happened in the past three weeks as home care and cancer centre nurses struggle to help me overcome rashes, itchiness, and concerns about inflammation.
This example only goes to prove that my "anal" approach to medical information simply didn't go far enough. I am keeping a diary of just about everything being done or happening with my body in the hope of avoiding "ignorance" in the future and expedite decisions about using appropriate products.
If I have advice for anyone dealing with such intensive medical care issues, it is this. Learn everything that you can, write it down or get your care giver to write everything down, and get copies of your medical records. Be sure to include both generic and brand-specific information.
This is only useful advice for those who can handle the information overload or have a natural interest in such matters. But even if you're not naturally inclined to learn these details, it helps to have the information available. It saves time, it prevents needless mistakes, and it keeps medical practitioners aware of the important fact that you know what you're talking about. When they realize that, most will respond with more detail and avoid the fluff and platitudes patients so often get as a kind of default communications strategy from their doctors.
What do you need to know? Hard to say precisely, but the best default answer to that question is this: "everything that might possibly be useful; everything that another medical practitioner might want to know."