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Patient Perspective: Learning About HIV—the Virus and the Stigma—and Helping Others

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Anonymous Patient

Anonymous patient has no relevant conflicts of interest to report.

View ClinicalThoughts from this Author

Released: January 10, 2022

I was introduced to the stigma associated with my HIV diagnosis very abruptly. I awoke in the hospital after an acute illness, and a medical resident entered my room and asked me how long I had been an HIV drug user.

I became very upset and agitated and told him that I didn’t do drugs and I didn’t have HIV. He told me that I indeed had HIV and that I only had 2 years to live. I asked him to leave my room and not to come back. As he was leaving my room, he repeated that I only had 2 years to live. I decided then to prove him wrong.

Stigma From Healthcare Professionals, Family, and Beyond
Soon after, my son came to visit me, and we both cried. But his tears were not for me. His tears of concern were for the many people he knew in town and what they were going to think. I told him to get out if that was how he felt. The tears kept coming, but he didn’t leave. I told him I couldn’t change his mind or my HIV status—all I could do was move forward and deal with it.

I also attended my nephew’s church for 3 years. As he says, everybody—no matter what—is always welcome there. But during altar call, when I finally revealed that I was living with HIV, my nephew jumped across the pulpit saying that it was not my fault! I told him to stop and that it was not his call to tell people what is and what is not my responsibility. I haven’t returned. No one is at fault for carrying a virus for which there is no cure.

Once I had personally accepted my HIV diagnosis, I asked about volunteering at a local center that helped people with HIV, but I was denied because I was a client. I saw that as a challenge. I hate negative responses when I know there must be options.

I reached out online to various HIV groups across the United States. I would stay up until 3 or 4 am because so many people were still online and willing to talk about personal things they were going through or groups they were working with to help build bonds with other people.

From these conversations, I learned that it is important to me to help other people learn about HIV and the stigma surrounding it. Unlike some people, I wanted to talk about HIV, and I think that was how I handled the stigma. I was almost to the point of introducing myself and immediately telling people I was HIV positive—I wanted to know who was for me and who was against me. If you wanted to learn more about HIV, I was there to teach you!

So many people have no one to talk about HIV, and they keep everything inside. Maybe they can talk with their physicians, but maybe not. Just think of that medical resident who came into my room. He wasn’t professional; he wasn’t kind. I think I can deal better with the stigma of someone who’s not in the medical industry because they’re a little bit easier to explain things to.

I plan on doing my volunteer work until I can’t anymore. For whatever reason, God gives me the strength to get up out of bed, to talk to people, and to give them hope so that they continue to take their medications for HIV. I tell them to not worry about what other people think of them, and I encourage them to share some of the good things that have happened in their life with someone else. There is life beyond diagnosis.

Your Thoughts?
In your community, how do you support patients with HIV who face stigma because of their diagnosis? Join the discussion by posting a comment sharing your experiences, and then learn about other key decisions in HIV.

Educational grant provided by:
Gilead Sciences, Inc.
Janssen Therapeutics, Division of Janssen Products, LP
ViiV Healthcare

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