The Changing Face of HIV/AIDS: Susan’s Story

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October 31 2012


HIV/AIDS is often perceived as a gay male disease. The association is longstanding. In the early 1980s, when doctors first identified the disease in the United States, HIV was known as “GRID”—gay-related immunodeficiency disease.

Today, the face of HIV/AIDS is changing. In the United States, almost 30 percent of new cases are now in women. UNAIDS reports that HIV is the leading cause of death among African-American women ages 25-34, and worldwide, women account for 50 percent of people living with HIV.

Susan*, an advocate for HIV/AIDS awareness, has had first-hand experience with HIV and its rising threat to women. She lives in Tampa, FL, where misunderstandings about HIV/AIDS are common. Susan hopes to spread her story to her church, her community, and the world in order to educate others and erase the misconceptions about the disease.

Susan’s Story, In Her Own Words:

I first found out I was HIV positive 11 years ago. Prior to this, I had had three marriages in which HIV may have been a risk, but we avoided getting tested. I talked about getting tested with my third husband, but he told me that he loved me, and I loved him too, so we would just have to deal with it if it came because we would be together forever. Unfortunately, he passed away on me.

Soon after, I decided I needed to get tested. At first, the doctors turned me away because they believed I was not at risk for contracting the disease. Maybe this was because I did not “fit the box,” but I told them I was concerned. I tested positive for HIV. The nurse was more upset about it than I was. I told her not to worry, and that I loved my husband to death so it did not bother me.

There is a stigma against the disease. People think that you are dirty, that you are nasty, that you are filthy. This makes people afraid to get tested and ashamed of themselves if they have the disease. I think I married my husband because at age 40, I was afraid that I would never find anyone else who would love me for me. It is important that people are aware of what is going on so that we an get rid of the stigma.

I have gotten comfortable with myself and my own situation, but I understand that many others are not. There has to be more awareness. Where I live, I rarely see information about HIV on the TV, on the radio, in magazines, or even at the doctor’s office. When you open a magazine you see cancer, but you do not turn the page and see HIV and what research is being done. There must be more of a focus on fundraising for HIV/AIDS research.

I have had this disease for years, and finally have realized that I need to talk about it, put it out in the open, and be a positive mentor for people in my community. I will be participating in a ‘Ladies Seminar’ at my church in order to teach women, both young and old, about HIV. Our young girls have been born and raised in this church, but once they turn 18, they become pregnant. They may not listen to us when we say, “don’t get pregnant,” but it is my hope that they will listen to the risks of HIV. I want these women to be aware of what is going on around them, get tested, be proud of themselves, and take care of their bodies.

AIDS is a lifestyle. I have this disease and it will stay with me forever. However, my quality of life has changed and I respect myself more than back then. I envision a cure being found in my lifetime and see myself as making a difference in the world and in my community.

*The name of the author has been changed for privacy reasons.

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