Ramses’ Story

Ramses: My Story of Learning How to Live Well with HIV

In 2013, Ramses tested positive for HIV.  He was 20 years old. “I got sick, with one thing after another. Swollen lymph nodes. Then a cold sore. Eventually fevers.”

He’d go get medical attention, but no one was seeing everything in totality.  He thought maybe he had the flu.  In his worst thoughts, he wondered if he had cancer.

Then one day, he couldn’t get up.  He went to the emergency room. “It was a doctor, one who was not very friendly,” Ramses recalls.  “He looked down at me and said ‘you probably have HIV.’  I was shocked.  I had not considered that a possibility.  It was a terrible way to put it to me.  I asked if he had tested me?  Was he sure?  Was this a diagnosis?  Or just his opinion?”  The doctor did a blood test, and sent Ramses away, telling him they’d let him know.

Ramses waited over a month for the test results to come back.  He was scared, as he didn’t know much about HIV. He admits that, in the past, he had been among those who had thought unkind things, said unkind things about people who had HIV.

While Ramses waited for his test results, he started doing some research about HIV.

Although it was a time of great stress, a long period of waiting, he says it did help prepare him emotionally, and give him some time to do the research and learn more about HIV.

“The fact that it was so drawn out, as difficult as it was, it helped me prepare a bit instead of the news coming as one big shock,” he remembers. “In school all we got was scare tactics. AIDS is bad, it kills, don’t get it. So I had to learn the reality.

By the time I actually got the diagnosis, I was somewhat prepared. Of course, I was scared.  But I thought:  Ok, I am going to have to face this. I am not ready to die and I found out that with medications HIV isn’t a death sentence.

I did not want to become hopeless. So I tried to see this news in a positive light.  I want to take this diagnosis, and accept that HIV is part of me, and I want to be a good person.” He admits he did have a moment or two of pity and self-blame, but a catharsis of tears–and some supportive people–helped him.

Soon after finding out the news, Ramses told his mother.  Although Ramses was living with her, their relationship had been strained.  She was upset about him being gay, and they had a difficult relationship since he came out to her.  He tried to keep it from her for a time, but knew he needed to tell her.  Her response was not what he expected.

“We were both crying as I told her.  When I told her that I was HIV positive, suddenly everything changed.  It brought us together.  It put things into perspective.  She was able to focus on her love for me, rather than judgment.”

When asked how he went from HIV self-stigma to accepting himself and his new status so quickly, Ramses talks about his mother, and the positive responses he received from other people he loved and trusted with the news.

“I got connected with a very helpful and supportive doctor who taught me about HIV and he showed me how I can manage my disease to a great degree if I take my meds and live a healthy life,” he relates.  “And early on, I told my sister, and my best friend, and a few others.  Each time I shared this news about my diagnosis, I was expecting stigma, shame, people thinking I was going to die. Instead, I heard ‘it’s ok, I love you.’ That really helped me to love myself more.”

Ramses did have negative reactions from a few people. He shared the news with a good friend, who then shared Ramses’ HIV status with others, including someone who started sending texts to Ramses that AIDS was going to kill him.

And once, when Ramses went to a new doctor for a routine medical issue, he disclosed on the intake form that he is HIV-positive. The doctor refused to see him. Although his initial reaction was being hurt and bringing him to tears, Ramses soon realized how inappropriate that was, and made a complaint about that doctor’s ignorance and discrimination.

“It’s been a learning process for me. The stigma has been a barrier at times. But I have some awesome people in my life.” The affirming responses from those who matter most to him have been most impactful, he says. “To be honest, I still struggle with telling people sometimes, but I feel a need to tell people. I want to end this stigma. I don’t want anyone else to feel that stigma and rejection and hopelessness. No one should have to face that.”

Soon after he started anti-retroviral medication for his HIV, Ramses’ viral load was reduced to an undetectable level, meaning he was likely to stay healthy and he could not transmit HIV to anyone. “For a while, I didn’t want to date,” Ramses shares. “I didn’t want to have to tell someone and risk rejection. But after some time I did start dating.  Eventually, I met someone I really cared about, and we started talking and getting to know each other. When I was ready, I told him about my status. He told me he was HIV-negative.”

“I was uncertain how he would react, but I was hopeful because things were going very well between us, and it seemed like he wanted to understand what it might mean to date someone with HIV.  It took him a bit of time to process it, and do some research about how we could stay safe.  He talked to one of his friends who is positive, who helped him better understand.  He went on PrEP for extra protection.  We could talk about it and take precautions so we both felt comfortable.”

After they fell in love and spent a few years together, Ramses’ partner proposed to him, and they were married in 2016.   His mother was there at the wedding, and continues to be one of the supportive people in Ramses’ life.

Ramses came to TIHAN recently–not for support services, but because he wanted to get involved and volunteer. He heard about TIHAN from a friend at the Petersen HIV Clinic where he gets his medical care, part of the University of Arizona’s infectious disease division which collaborates with Banner Health. “I’m getting involved with TIHAN because I want to stop the stigma and judgement,” he shares. “I want to start the conversation about HIV. I want to do outreach and educate people about HIV. I want to share my story. Maybe I will become a link specialist to help people like myself, too.”

Ramses is honest about what it might be like for him. “Sure, I am hesitant sometimes, and I do think some people might judge me, think something about me or say something about me, but I still need to do it. It’s important. Your comments are not going to stop me.  If people really care about me, they won’t judge me. If they want to judge me, that’s their decision. That’s their issue. It’s not going to impact me. That says something about you, not about me.”

At this time in his life, Ramses is ready to go to the next level and help others. “I want people to be happy, to not worry about the stigma. I want to tell people to live your live, take care of yourself, be a good person. Don’t worry about others judging you. We are all just regular people, with regular lives and regular jobs. And we deserve all the best that life can offer.”

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