Rutgers Cancer Institute of New Jersey
195 Little Albany Street
New Brunswick, NJ 08903-2681
Beverly, 46, tested positive for HIV eight years ago. The Washington health educator stays abreast of the latest research and is optimistic about the future. Here’s her story.
What was your first sign that something was wrong? What symptoms did you experience?
I didn’t have any symptoms but knew I had put myself at risk. I had been an IV drug user for 16 years and had unprotected sex with someone who tested positive for HIV. I knew in my heart I could be infected but was afraid to be tested. But I knew people who were HIV positive and knew if they could deal with it, so could I. Finally in 1993, I went for testing. I didn’t start to show symptoms of a faltering immune system until 1996, when I developed vaginitis, colds, and sinus infections that were more severe than ever before.
What was the diagnosis experience like?
My doctor had tried to convince me to be tested, but I didn’t want my insurance company to know if I was HIV positive. I went to a clinic that provided anonymous testing. My name was not identified with the results. The woman who gave me the results looked more scared than I was. She gave me the name of a doctor, but I didn’t go. At the time, I was dead set against starting on drugs to treat HIV. My instincts served me well. Now they don’t recommend that early treatment.
What was your initial and then longer-term reaction to the diagnosis?
I was in shock. The positive result didn’t hit me until the next day. I worked as a counselor in a drug-recovery program when I learned the result. A month or two later, changed jobs and began working as a chemical dependency counselor with HIV-positive men. Now I work with an agency that advocates for and trains women and children who are affected by HIV. I like helping people. It’s spiritually uplifting to know that I am making a difference in someone’s health. I stay on the cutting edge. I read everything I can get my hands on. There’s an ever-changing landscape of treatments. I want to avail myself to them and survive as long as possible.
How is your disease treated?
I receive medications through a clinical trial. I recently took a break from the drugs. The drugs have side effects, including a shifting of fat tissue, high blood fats, and cholesterol. But the side effects are mild. I recently developed high blood pressure, probably from the drugs. I also see a primary care physician for routine health needs and an acupuncturist, who offers a holistic approach. It’s important to remain mindful of other health issues.
Did you have to make any lifestyle or dietary changes in response to your illness?
I try to make sure I get enough rest. I’m not as good about making opportunities to regularly exercise, but I try. I take nutritional supplements and eat a healthful diet. I watch my sugar intake. The medications can cause insulin resistance, so I have to be careful. I don’t smoke, drink alcohol, or take recreational drugs.
Did you seek any type of emotional support?
After I tested positive, I went to a 12-step AA meeting for people with HIV. It was a cornerstone of support. I now work in a supportive environment.
Did/does your condition have any impact on your family?
My immediate family has been supportive. Just as I had to go through the process from denial to acceptance, my loved ones had to as well. I say let people who love you know your status. If you don’t have loved ones, find people to care about.
An area that’s still difficult for me is dating. During the four years from my drug recovery to HIV diagnosis, I didn’t date. I knew if I were dating, I would have to deal with it. Once I was tested, I started dating immediately. The last person I was involved with was HIV positive. If I don’t know the man’s status or do know that he is negative, it’s hard to tell him.
What advice would you give to anyone living with this disease?
If you are at risk and don’t know your HIV status, seek support and get tested. There are treatments that can make a huge difference in your quality of life and survival, and there will be more in the future. But you can’t avail yourself, if you don’t know your status.
Be honest with yourself and educate yourself. If you are living with HIV or anything serious, the more you accept the situation, the more you will make the best of what happens.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.