AIDS Community Research Initiative of America (ACRIA) Vol 14, No. 1 - Winter 2004/05
Patricia Storey

I remember growing up as a child in the 60's and 70's when life was oh so much easier and less complicated - at least in my mind.

There was only one thing that was required of me at all times and that was to "Do as you're told." It was a golden rule understood by parents and grandparents alike, repeated to me so often that it became a part of my schema. And I learned to act accordingly.

What I didn't understand, however, was that the rule applied to all relationships across the board and it didn't matter who was doing the telling. As a child, grandma always said, "A child should stay in a child's place." After stepping out of place one too many times and not being able to sit more often than I can remember, I finally learned not to question any adult no matter how ridiculous they sounded at times.

Going with the flow worked for many years, but then something happened that I had no control over. I grew up, and it isn't as simple as our parents would have us believe. Life is very complicated and, in order to survive the journey, one of the skills you must acquire is learning to advocate for yourself. The "Do as you're told" mentality instilled in me as a child may have been sufficient in childhood but, as an adult, I found out the hard way that it didn't get me very far maneuvering through the challenges of life.

After learning that I was HIV-positive in March of 1998, I began to look at life in a totally different way. I question everything and everybody and no longer take anything at face value. I'm learning to live each day as if it were my last, and my values, priorities, and relationships have changed drastically. These relationships include those with each one of my healthcare providers.

Before I was HIV-positive, I would go to any doctor; it really didn't matter what initials followed his name as long as he had an office, a nurse, and a prescription pad ready to write what I thought was the cure-all for whatever ailed me.

Today, all of that has changed. The doctor/patient relationship has taken on a whole new meaning, and I can no longer afford to compromise my health by trusting my care to doctors who aren't knowledgeable about the illnesses that are specific to me. The way that I took great care in choosing the dealer with the best drugs when I was using is the same care I take in finding the right healthcare provider.

A positive doctor/patient relationship is a crucial component of the healing process. There must be mutual respect, open communication, and a willingness to listen and respond to each other with nothing less than positive vibes. It's important that we feel comfortable enough in our relationships with our providers to be able to agree to disagree with each other. After all, they're human and, therefore, capable of mistakes, just as I am.

One factor that has greatly improved my interaction with my doctors is that they know I'm my own best advocate and strive daily to keep abreast of the HIV/AIDS pandemic. Someone who is self-empowered has the ability to unlock doors and create communication opportunities that someone who isn't empowered cannot.

I no longer take on the role of a spectator when it comes to my healthcare. I am an active participant with expectations that far exceed any other relationship in my life.

Living with any chronic illness can be a challenge physically, emotionally, and financially, and the last thing you need is to be locked into a doctor/patient relationship that isn't working. The goal is to promote healing, not to hinder it.

When my friends come to me complaining that they aren't satisfied with their doctor or the healthcare they're receiving, I leave them with these words: "What are you going to do about it?"

Patricia Storey is a member of ACRIA's Community Advisory Board and a student at the Black AIDS Institute.

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