Information brings confidence
May 18th 2009PostmasterCoping & Health Information
I have attended several conferences and meetings recently discussing the role of information technology in patient care. This is a real interest of mine and one that I have personal experience in. Shortly after my initial diagnosis (I couldn’t do anything for about a week) I began what turned out to be an insatiable search for information about my disease, treatment alternatives, odds, personal stories, etc. I used this information, primarily from the Internet, to manage my disease throughout my long, eventful journey. Admittedly, I am a control freak about my health. I need to know exactly (or as close as possible) what is happening to me and what I should be doing about it. But I wouldn’t do it any differently.
I have been surprised recently to learn that many patients do not feel a need to know all about their disease, that they either don’t want to know or they are more than satisfied to follow their doctor’s orders. Is this denial or blind acceptance of medical authority? Perhaps. But who am I to criticize how people choose to cope? I just hope they are making a conscious choice.
Learning as much as you can about your disease has many, many benefits. First and foremost, it gives you some control over a disease that is very hard to control and that makes its own rules. This is important for me but may not be for others. Secondly, it helps me make decisions in collaboration with my medical team. This is very important. The Internet cannot make you a doctor but it can help you discuss and understand diagnoses, test results and alternatives in an intelligent manner. And not just with doctors. I’ve found it very useful to explain my situation to family and friends in an understandable way. This is my support network and they need to know to be able to help.
But most importantly, it can give you confidence that you are getting the best treatment possible. If you know what the doctors know and, to some extent, what they don’t know, then you are better able to assess whether you are being given all of the information available. That the decisions you make are based on the best information you and your doctors have.
When you are dealing with a disease that takes so much control away from you and that is fraught with gray areas, confidence is hard to come by. Grab what you can.
Posted by Doug
