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This essay is not meant as an indictment of any doctors, nurses, or other personnel. I owe my life to the many medical professionals who
have helped me over the years. However, having a chronic illness has taught me to take a more active role in my treatment. I believe it is important to be an assertive patient, especially with a rare illness, so that you and
your doctor(s) can work as a team to fight MPA.
Over the past thirteen years, I have battled both my disease and the various medical professionals I have dealt with. I changed from a meek, compliant patient into an assertive collaborator in my medical care. I learned that
even when I cannot change a particular situation, I can alter my response to it so that I feel more in control.
When I first got sick, I saw a nephrologist who was an excellent doctor but didn’t seem to know how to interact with me. There was no room for discussion in his office. If I questioned a prescription or direction, it was as if I
had committed a mortal sin.
Medical education seems to stress technical skill over interpersonal skill. Many of the medical journals I have read recommend using observation and skillful questioning to get information out of patients, as if patients are
incapable of offering anything useful without help. Even worse, some articles actually recommend treating patients like children. It seems that the medical community sometimes regards patients more as objects to research or
puzzles to solve than as intelligent beings able to make decisions and offer input.
There are doctors who are not afraid to admit that they are confused or puzzled by a situation. They listen to patients and consider their feelings when recommending treatments, and they give patients input into decisions
regarding their health.
After five years, I found a doctor who respected the fact that I knew my body well and that I did have considerable knowledge about my disease. More than once, he recommended or changed treatment solely on the strength of what I
said I felt or thought. Although many doctors might say that relying on a patient’s opinions in this way is unsound, I believe that the trust he showed helped me to feel more in control of my disease, and, if nothing else,
improved my mental state.
I believe that the time and effort it took to find a doctor that I could interact well with was worth it, and that there is simply no reason to stay with a doctor who makes me feel angry or frustrated, no matter how talented
(s)he might be.
Educate Yourself
The first step toward being able to collaborate with your doctor is learning as much as you can about your
disease. Those of us who have an extremely rare disease have all the more reason to learn about it. Often we have to educate many of the doctors who see us
My learning was, at first, on a very basic level. I listened to what doctors said. I took notes when they came to consult in my hospital room. I read my chart and asked anyone who seemed willing to answer my
questions what this notation was or what that test meant. I started asking the doctors why they thought what they did. I rephrased what doctors said to me to be sure that I understood what they were talking
about. Whenever I did not understand, I asked again.
Granted, some doctors and nurses were clearly upset when they saw me reading my patient chart. Some people bristled when I asked questions, but I refused to let them intimidate me. This was my health, after all.
After I got some basic information from the medical professionals, I moved onto published literature. Articles about even the rarest disorders can be found in medical journals and magazines, nearly all of which are
available to the public. The popularity of the Internet has made it even easier to find information; a number of medical journals are now directly accessible on the World Wide Web.
Change Your Behavior
To take control of your disease and treatment, you must become a strong patient. Treat all medical
professionals with courtesy, but remember that no one has the right to be rude, pompous, or threatening simply because of a degree or position. Remember that you are an adult, not a child, and you are not an
inferior being. No matter what your level of medical knowledge, you do not deserve to be patronized, and you should never stand for that kind of behavior.
How can you become a more assertive patient?
- Come prepared for every doctor’s appointment with enough knowledge about your disease to describe it and discuss it.
- Know the names and doses of all the medicines that you take.
- Ask questions constantly—not to challenge or provoke, but simply to understand.
- Express your opinions clearly when you meet with doctors.
- Above all, remember that treatment recommendations are not orders. You have the right to decide on treatments without bowing to intimidation.
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