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

It's hard to talk about my relationship with my physician without first talking about my experience before I became sick with the dreaded PCP (Pneumocystis pneumonia). Prior to getting PCP, I was not a compliant patient, nor was I very open and honest with my physician. I only took my medications if I was around someone who would notice that I wasn't taking them. My doctor's office is an hour and a quarter each way by car, and every time I went, I knew that I would be forced to wait at least an hour. I'd cancel my appointment if I could think of any good excuse to do so. Hang nail or headache anyone?

Each time my doctor saw me, he would try to explain my health. It would just go in one ear and out the other, as if he were talking to someone else. I was in total denial. I flushed big amounts of medication down the toilet at least three times a year. To this day I don't understand why I even picked them up from the pharmacist. It was easier for me to deny what was happening than to live with the side effects - diarrhea, nausea, vomiting, fatigue, and headaches.

In 2000, PCP came to visit my body. I remember calling my doctor only because I really thought that I was about to die and I was scared. I was a single mother of two children, and there was nobody else good enough in my eyes to finish raising them. I was sitting in the emergency room, and the doctor came in and told me that he thought that I had PCP. I remember crying, thinking, okay, this is it, my number is up. He sat down and talked to me. I think this was the longest discussion that I had ever had with him. He explained what was happening and what the course of treatment would be. He explained what a respirator does and told me that there was a possibility that I would need one. He explained how he would go about putting me on it if needed and that he would eventually get me off it. I was horrified, but I had reached rock bottom. I needed to trust someone. He told me that he felt that he could pull me out of this if I followed his directions to the letter.

For the first time in my life, I realized that doctors really do care about their patients and that they're human beings, too. I realized that he truly cared and was going to try his best to help me get through this. From that point on, I realized that my care would be more beneficial if I responded openly and honestly to his questions. I also felt more comfortable bringing concerns to him. He knows that I won't just call because of a hang nail. He respects that it is ultimately my body and my choice, and I like that he respects that. He tells me what he would like to do for me, and we talk about it. We work as a team to figure out what will and what won't work. Before getting sick, I would agree to anything and then only do what I chose to do. Before getting sick, my doctor was only getting half of the picture.

I've learned some important lessons because of my experience. I've learned that starting and stopping my medications so many times was worse than if I hadn't taken any at all. I developed resistance to a lot of medications by starting and stopping them so often. I burned a lot of opportunities, and now I pay the price by not having those medications available to help me today. I also learned that doctors are human beings trying to help us. But we, as patients, need to do our part, too. It's important to understand what's happening and to report changes that we notice. As patients, we're the best ones to tell our doctors what our bodies are feeling. Doctors and patients need to work as a team. It's sad that it took my getting really sick for me to realize that I needed to build that relationship with my doctor.

I think that I originally went into such denial because of my first doctor-patient relationship. I had received a letter from the Red Cross stating that I needed to get a follow-up HIV test after donating blood. When I found out my status in 1985 (from a different doctor than my current one), he told me that I had six months to live. I remember him asking me all kinds of personal sexual questions that I was in no way comfortable answering.

My husband was with me, being tested for HIV for the first time. One doctor pulled me into one room while my husband was pulled into another one. We were both drilled about our sexual experiences. I was horrified. I felt that I had done something very wrong and very dirty. The hardest part was knowing that I hadn't done anything wrong - I had fallen in love and married, which, to this day, I do not feel was wrong. I couldn't understand why they kept asking the same questions over and over about who I had had sex with and how and where, when I didn't even understand what HIV stood for. These experiences made me afraid to talk to anyone who called themselves a doctor or a nurse. Even though I changed doctors, I carried this feeling with me until I became sick and eventually realized that I could, in fact, trust my physician.

Things are a lot better now. My viral load is undetectable, and my T-cell count is 367, from a low of 8! As of the year 2000, I have taken every dose everyday and been 100% committed to my health regarding medication. I am committed to sharing my past experiences with others to make their HIV/AIDS travels more knowledgeable and smoother.

Penni Cleverley lives in St Johnsbury, Vermont and works for Vermont CARES (Committee for AIDS Resources, Education, and Services). Penni is Co-Chair of the Vermont Department of Health Community Planning Group (CPG) and a member of the Vermont Department of Health's HIV/AIDS Services Advisory Council (HASAC).

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