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Humberto Talks About Life with HIV
Humberto, a former IPPF/WHR employee, talks openly about his experiences living with HIV and the importance of eradicating the stigma surrounding the disease.
I am HIV positive, and know more than I’d like to about the power of stigma and discrimination. Stigma against those of us living with HIV makes it hard to talk about our experiences. It also makes people afraid to get tested, which contributes to the spread of HIV/AIDS. I want to share my journey with you and open up the dialogue about HIV because it’s essential for everyone.
I found out I was HIV positive in 1986. Here’s what happened: my lymph nodes were inflamed, so I went to a doctor in New York City who I thought would have other gay male patients. He asked me to sit down and said, “You are HIV positive.” I wanted to die right then and there. He drew blood to confirm. When I called to find out the results, he said, “syphilis is negative and you’re positive.” Then he hung up. That was the extent of the support and counseling I received in 1986.
I worked for IPPF/WHR, which focuses on sexual and reproductive health, and was living in NYC, so I had many advantages compared to people with HIV working in other professions or living in other places. I was relatively lucky. But still.
Despite the field I worked in, I was still scared to get treatment through my insurance: I didn’t want my office to find out and fire me. I had no indications that would happen, but that was my fear. I managed to get AZT through a program outside my insurance. I had a terrible reaction it, and finally decided to start using my regular health provider. But I still didn’t tell anyone at work.
Years later, when my office was implementing an HIV policy, I finally had the courage to say something. I presented at a staff meeting where I talked about all the stigma and discrimination I had faced and its negative effects. Because any negative comment, joke, story about someone getting fired increases your fear, your own internal sense of stigma about living with HIV.
There were times when I was suicidal and thought, there is no way I can carry on with this, I’m going to end my life. Thank God I was resilient, and had the support of my partner. I’d already experienced a painful coming-out process as a gay man from a Catholic country. Disclosing my HIV status was like coming out of the closet all over again. To this day, honestly, I don’t know which was harder.
This is why it’s so important to talk about it, and why I continue to do so. I think people are still very afraid. In some cases, it’s not even that they really have stigma or prejudice, it’s that they are afraid and don’t know how to deal with it. We are all humans, and we’re scared of what we don’t know.
Since I’ve started telling my story, life has been so much easier. It’s easier to be myself, and open up and really take part in discussions. But not everyone is in a position to do this, even today. You hear about people in some countries being killed for having HIV. We all have heard stories of horrible things that happened to people who are HIV positive, and harm is still inflicted in smaller ways every day, when people receive poor services or are denied the support they need—such as when my doctor hung up on me back in 1986. More still needs to be done, and we have a lot to contribute to this.