The Positive Side

Fall/Winter 2001 

Why I Attend HIV Rounds

By Wayne Stump

AS SOON AS I LEARNED TO READ, my favourite books were the “How and Why” science series. As a child, I simply had to know all I could about how everything in the world worked. This motivation to ask the Hows and Whys hasn’t changed much, except I now realize that most things are more complex than I ever would have guessed.

Since 1989 — the year I was diagnosed with HIV — I’ve learned to be skeptical about most things I’m told, especially when it’s coming from professionals or government officials. These days I verify everything I hear against my own common sense and knowledge and, when possible, back it up by checking resource materials. To the dismay of many, I’m sure, I barely disguise this skepticism.

Making the Rounds

A few years ago, as a CATIE volunteer, I saw a notice on the office bulletin board about a series of one-hour talks — called “HIV Rounds” — taking place in a basement lecture theatre at the former Wellesley Hospital in Toronto. I decided to slip into the lecture hall and see what this was all about. Most of the audience was comprised of doctors, nurses and other health care professionals, complete with hospital badges and stethoscopes. Feeling a little nervous, I wasn’t sure if I belonged. Who was I, a volunteer with my modest educational background, to be sitting in a room full of lab coats?

But it wasn’t all that bad. For one thing, nobody asked me to leave, even after I snuck a little lunch provided by the nice corporate sponsor. Although the speakers presented their ideas rapidly and it was difficult to absorb every detail, I did manage to jot down some notes and retain a few concepts. And, to my surprise, the scientific approach of the presenter and the ensuing audience discussion pressed all the right buttons in me.

Rubbing Elbows at Rounds

Now I’m a regular at Rounds. My favourite type of talk is the Case Presentations, in which a doctor presents details of a particular patient’s relevant medical history, without revealing his or her identity, of course. Sometimes the doctor will ask audience members to suggest a specific diagnosis or ideas for further testing. The discussion and debate that follows provides tremendous insight to a layperson such as myself about medical practice and the intricacies of decision-making. From those discussions I’ve learned that medicine is an art as well as a science. Plus, the interchange with health professionals has helped me to understand the benefits, risks and limitations of my own HIV treatment better than I could on my own.

For some people, movie-star sightings are a big deal; that’s how I feel when I get to see the giants of the HIV research world at Rounds. Sometimes I even have the opportunity to ask a question or exchange a few words with them after their talk. Speaking with these doctors and scientists can be quite revealing. Why did they choose to study HIV and what are they like as people? Of course, most professionals who present at Rounds tend to focus on their work and the intellectual rigour of their findings, not on themselves as people. But by listening carefully, one can glean subtle clues about their personal perspectives.

A More Rounded View

One thing that attending Rounds has changed for me is my view of health professionals. If anything, my distrust of doctors has abated somewhat. I’ve been most impressed by the general intelligence and passionate commitment of these professionals. Sometimes after a talk I’ll ask a presenter for further references — hello skepticism! — to peer-reviewed periodical literature or biomedical journals, which I later peruse at CATIE or the university or hospital libraries. Often this means slogging through dense basic science papers I quite frankly don’t understand, but at least I have the satisfaction of knowing that the presenter based his or her arguments on solid ground.

The challenge of learning new things is a lifelong quest. Since I’ve taken it upon myself to learn about biological sciences and medicine through the lens of HIV disease, I’ve discovered how complex models of living matter are and, hence, the internal workings of our bodies. Learning all that I have about HIV disease has also given me a sense of power and control over my own health care.

On the flip side, ever since attending Rounds I’ve been able to look at HIV through the lens of biological sciences and medicine. That has been the greatest reward of Rounds: seeing HIV as a biological phenomenon stripped of all religious, political and social judgments. From this vantage point, I’ve been able to shed some of my own internalized shame and guilt surrounding this disease. Knowing that what I have is just a disease is incredibly empowering.

Lastly, I’ve discovered that even the smartest doctors and scientists don’t and probably never will have all the answers to the mysteries of how our bodies work. Like me, they’re still searching for answers, learning something new every day.

Wayne Stump has been a volunteer at CATIE for five years. When he’s not rubbing elbows at Rounds, he can be found riding his bicycle in the streets of Toronto.