Words of Experience from Positive Women
The following are the wise words of two women who have considered anti-HIV therapy at one point or another. They share the processes they went through when making their decisions, what helped and the challenges they faced.
Sarah has gone back and forth about starting therapy. Her CD4+ cell count is just below 350 and her viral load fluctuates between 30,000 to 40,000 copies. Her provider recommended she begin therapy. She decided not to start anti-HIV therapy. Instead, she uses traditional Chinese medicine, herbs, acupuncture, and eats well (only organic fruits and vegetables). She is healthy and feels great!
Q: What types of things did you think about when considering therapy?
A: As I was going through the motions of investigating, while my heart told me not to take it [anti-HIV therapy], my doctor and other people told me to start taking it. A lingering feeling of the gamble if I take it or if I wait is always at the back of my mind. It's a constant struggle.
Q: What kinds of resources did you use to help you think through the decision?
A: I spoke to friends and Project Inform. I read a lot and used the Internet or got information from places like TheBody.com, Kaiser Family Health Foundation, Centers for Disease Control, National Institutes of Health, and BETA (San Francisco AIDS Foundation's treatment publication).
Q: What type of advice would you give to a woman considering therapy?
A: The decision that you make is yours; other people shouldn't tell you what to do. Understand the medications and what they do. Flush out all your concerns, expectations and fears. You need a lot of education!
Diane was diagnosed with HIV in 1988 when only one drug was available -- AZT (zidovudine, Retrovir). Her doctor tried everything he could think of to stall the progression of the virus and put her on a 30-day cycle of AZT at 1,200mg/day. That's 3 pills every four hours all day. This is twice the currently recommended dose of AZT, but was still used by many doctors in 1988, especially in people who didn't have AIDS. Diane recalls her experience: "It was a very negative introduction to meds for me and it really scared me."
In 1992, Diane's CD4+ cell count dropped to 500. After having her labs show CD4+ cell counts below 500 on three separate occasions, her doctor suggested therapy.
"I asked him if I take meds until my T cells [CD4+ cells] go above 500, can I stop? He said no, that I would be taking meds for the rest of my life. It felt like the beginning of the end. I felt like I was being punished. I had not disclosed my status and didn't know how to deal with that. I knew there were a lot of side effects.
"At some point, I began to realize that the pills were not my enemy. I was supporting my body. They (the pills) are like this superpower. At the same time, they were also harming my body. They reminded me that I was sick! So I had to make friends with my pills. The more I learned about what the meds were doing, the more I could understand it. I started to embrace them."
Q: What advice would you give to women considering therapy?
A: Ask every question you possibly can, as many times as you can, until you completely understand it. Understand that the drugs are not perfect. They are a tool in your toolkit along with the healthy eating and taking care of yourself. They are a component in a whole picture. Find a buddy who is also on meds. It is possible to live your dreams with HIV, and taking meds can be part of the success!
Q: How did you deal with side effects?
A: Side effects are as unique as the individual. They don't happen 100% of the time. They happen 10-20% of the time (and not in everyone). Talk out your fears about side effects. Take a few days off if you can at the start to get used to the drugs. Have someone around -- you may feel sick. Talk to other folks, and talk with them about your fears. Never put a handful of pills in your mouth . . . one at a time between bites of food (only for drugs taken with food). Drink water with a splash of juice to ease the nausea that may come with the taste of the pills.
Q: Do you have any other advice?
A: Find a buddy to cheer you on! Numbers (like CD4+ cell counts and viral loads) are guides. Even if you are far from taking therapy, it's okay to start researching and asking questions now so you're not overwhelmed when you come closer to making that decision.
This article was provided by Project Inform. It is a part of the publication WISE Words. Visit Project Inform's website to find out more about their activities, publications and services.