There are many of us who live with chronic or recurring illnesses.  We have the responsibility to ourselves and families to keep pace and hold firm in our insistence as to what is the best health care available for us. This means keeping massive amounts of documents—blood work, scans, procedures, operations, and doctor’s reports. It also means keeping a schedule for these tests and procedures as well as staying on a special diet, if prescribed, and taking your medication on a timely and regular basis. Indigenous to today’s world, we must keep up with the “information highway” and learn of the latest research, clinical trials and best practices pertaining to your disease or illness. Most of us belong to a listserv or support group so we can interact with others who have the same needs and issues. In this type of community, it is also a social responsibility to our fellow patients to offer up the benefits of our knowledge and resources.

 

As much as we complain that some doctors have less than optimum communication and listening skills, we in turn must learn these same skills so that our visits are productive. We don’t always realize it, but to treat us “well”  it is necessary for physicians to know us in spite of our illness or disease, i.e., our basic personality traits and life styles. I find most now accept my aggressive and can-do attitude and allow me a great deal of latitude in decision-making for my care. Always an overachiever (in some areas of life), I have about 25 professionals who treat me, including my primary care physician, secondary, tertiary care specialists, and alternative professionals. I have found that doctors don’t have the time to coordinate all of the spokes on my “care wheel”, so the responsibility is mine. I monitor and manage my tests, scans, visits and know when I should schedule them. Personally, I have two types of cancer and some serious coronary artery disease. I juggle any medical issues from the front burner to the back burner as the situation or timing dictates. My cardiac issues most always take precedence. Since the medical systems that support your doctors do fail on occasion, the patient or his/her advocate, has to be ready to step in.  

The Practical Patient Newsletter Winter 2011

 

 

 

Participatory medicine is a groundswell movement in which the paradigm is shifting from patients being mere passengers to becoming responsible drivers of their health, and in which providers encourage and value them as full partners.  http://participatorymedicine.org.