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Let Me Say This About That
The Significance of Patient Participation

By Sam Howell, MD

August 1999

In my practice of internal medicine I treat many persons with chronic illnesses, AIDS included. With the new treatments, AIDS has now become a chronic manageable illness instead of an illness where you constantly and frantically pushing back the date of death. No one can fight this illness for you. My attitude is that my patients are the captains of their own ship, I am their navigator, and give them advice and direction. Only the patient himself can take the medications, suffer their side effects, and report whether or not the treatments seem beneficial.

An actively participating patient has some sense of self-control. HIV is not just an illness...it is a lifestyle! Yes there are rules and guidelines to follow, but there is no one treatment, one size fits all, that can be applied to everyone. All rules have exceptions and there are millions of micro-decisions to made, often on a daily basis. An informed and active (as opposed to passive) patient makes my job easier. An informed patient may well discover a drug side effect or interaction that I just plain missed. The medical management of AIDS has never been easier and is only getting harder as our treatment options proliferate.

Frankly, to trust your body to your physician as blindly as I might trust my auto to my mechanic is probably hazardous to your health! Physicians are only human (even though many don't act like it) and we all have made mistakes. Remember, your physician, by definition, cannot see or feel your symptoms as opposed to physical findings that he may discover on examination, yet patient symptoms probably account for 80% or more of our decision making. If you don't know what you are looking for, you won't recognize it when you see it!

There are many good and honorable reasons to make exceptions to the treatment rules, but these exceptions should always be made in an informed capacity, and preferably in consultation with a physician who is willing to treat you in a negotiable rather than dictatorial fashion.

Finally, remember that all illnesses have their physical, mental and spiritual components. If you pour all your energies into the first two and neglect the latter, you are wasting a most valuable resource. May God bless you and strengthen you as you continue on your perilous journey.




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