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Life with Benny: My personal crusade through the fear and stigma of HIV

I was certain I contracted HIV when I was 15 years old.

The year was 1995; I had recently accepted the fact that I was gay and was ready to explore my sexuality.

A friend of mine, who was around the same age as me, came over one evening to sleep over. Our plan was to watch movies, hang out, and cause typical teenage mischief.

Somehow, we got into a little more "mischief" than we had planned, and ended up having oral sex. It was the first time I had ever experienced anything like that, and it was thrilling and nerve-wracking all at the same time.

To this day, I do not know if this friend is gay (he is married to a woman now) or if it was just innocent adolescent experimentation. Either way, the entire experience freaked me out, to say the least.

After we "finished," I excused myself to the bathroom and took a very long, hot shower to cleanse myself. I had recently learned that hydrogen peroxide could be used as a mouth rinse if diluted with 50% water, so I also gargled at least half a bottle of that.

The next morning, fear set in. “Oh my gosh,” I thought. “I am probably HIV-positive now.”

My memories of HIV education in the 1990s are quite frightening. We were told that if we contracted the virus we would die and our lives up until death would be miserable.

Of course, the health educators were simply trying to plead with us teenagers to protect ourselves from this disease that people, even in the United States, were still dying from on a daily basis. The advances in treatment that exist today which have prolonged the lives of so many living with the disease, had not been introduced yet.

I remember attending a school assembly in my sophomore year at San Diego’s Patrick Henry High School in 1996, in which a panel of HIV+ individuals spoke to us about their daily lives living with the disease.

I still remember the face of one gay man who told us he believed he contracted the disease just a few years prior, as a teenager, experimenting with a friend of his who had multiple sex partners.

I thought to myself, "oh my gosh - his story is the same as mine!" This confirmed my self-induced HIV diagnosis.

He continued to tell us about the daily effects of his HIV medications, including constant diarrhea and fatigue. Hearing this, my vision got fuzzy and I started to have a panic attack. I stood up in the center of the auditorium thinking I needed to get out of the room and I passed out in front of the entire assembly.

Of course, I told the school nurse I hadn’t eaten all day and just needed a bite to eat to feel better, but my mind was racing thinking about what my future would be like living with HIV.

I was most afraid of what my family and friends would think. How would I tell them I was HIV+?

For many years, I decided ignorance was bliss. If I didn’t take the test, I wouldn’t know either way and I would be fine, I thought.

An even though as an activist, I spent many hours of my young life encouraging my peers to get tested, walking friends over to the student health center to get tested, organizing World AIDS Day events, and handing out condoms, I did not end up getting tested for HIV until 2005 - when I was nearly 25 years old!

I was stupid and scared and thought I would be better off not knowing.

One day, I set up an appointment for a routine physical exam and when asked if I wanted to be tested for HIV, I finally said “yes.” They took multiple vials of blood, including one final vial for the HIV test.

Once the nurse left the room and the vials of blood sat there on the counter, I thought about taking the vial for the HIV test and slipping it into my bag. I ended up leaving all of the vials to be accounted for and went on my way.

At Kaiser, all physicals are done in two parts and the second part includes returning two-weeks later for all test results. I had decided I would not return for the results session because I was so scared.

I had been highly sexually active for nine-years within a "high-risk" population and had never been tested before. I was certain the diagnosis would be "+", so again, I just thought not knowing was the best way to go.

Coincidentally, I had made an appointment to see a psychologist at Kaiser two days prior to my physical exam results appointment. I went forward with this appointment, not realizing that doctors across Kaiser departments have computer access to all of my records.

As the appointment began, the psychologist pulled up my medical record to see if I had any underlying medical conditions that could affect my psyche.

He said, “oh, I see you just had a physical exam,” examining my record.

My heart sunk.

As he breezed over the chart, reading off my results, he said "and your STD check is fine - no issues there."

The biggest sigh of relief came over my body and mind as I unexpectedly learned that I was HIV negative.

After receiving this "clean bill of health," I was determined to continue to be safe and get regular HIV check-ups to ensure that my health and the health of my partners was taken care of.

Of course, fear and stupidity set back in. I did not get another HIV test until I was almost 29 years old.

I would ask my doctor to order all STD tests EXCEPT HIV for me. "I prefer to have my HIV testing done confidentially at the LGBT Center," I would tell him.

But when friends would ask to me to get a confidential HIV test with them at The Center or at the mobile testing units set-up at Pride celebrations, I would tell them, "I prefer to have my HIV testing done by my own doctor."

When I would set-up online profiles on sites like Adam4Adam.com, I remember always being faced with making a selection of my HIV status.

The choices were: HIV+, HIV-, and HIV don’t know.

I would always put “HIV-” even though in the back of my mind I would be thinking, "I really should put 'HIV don’t know'."

But my friends always said that if someone puts “HIV don’t know” or refuses to list any status, we are to assume that they are HIV+. I didn’t want that assumption placed on me, even though I really just was not sure of my status.

This caused my sex-life to be unfulfilled for a few years because I did not want to go all the way with anyone since I just did not know. I didn’t want to put anyone at risk for HIV because I was too scared to find out my status for myself.

I have finally gotten past my fears and committed to HIV testing every 3-6 months, and have done so several times for the past couple of years. I have remained negative and continue to engage in safe sex practices.

I do, however, have a problem with the stigma associated with the disease. This stigma is what led me to neglect myself for many years and what causes emotional and health issues for our friends and loved ones living with the disease.

We, especially as gay men, need to stand up and support our peers living with HIV. Far too many times do I hear other gay men cringing when they learn someone is HIV+. I continue to hear gay friends acknowledging that HIV is something that affects our community, but not them personally.

HIV, while serious, is just another health condition that people live with on a daily basis. We don’t treat people living with cancer like lepers, so I am not sure why this stigma still exists surrounding HIV/AIDS.

I have committed myself to regular testing, engaging in safe sex practices, and supporting my friends and loved ones who are living with the virus.

On World AIDS Day, I encourage everyone to go beyond just wearing a red ribbon or posting one to their Facebook profile. Really think about what that red ribbon means and what you can do in the upcoming year to support our friends living with HIV/AIDS and fight HIV stigma.

A friend told me that the opening line of this column, "I was certain I contracted HIV when I was 15-years old," was a little strong.

She believed that readers who are simply browsing or scanning through articles and not reading the entire thing may see that line and think I was HIV+.

She said, "do you really want people to think that about you?"

I told her that I don’t care (her 1980’s thinking put us in a little "tift" and we are not very good friends anymore). My goal is to fight the stigma associated with HIV/AIDS and I will do anything I need to do to assist in that cause.

I will continue to write, use my voice, walk in AIDS Walk, volunteer for HIV/AIDS causes, and do whatever it takes. I have even committed to participate in the 2011 AIDS Life Cycle bike ride.

HIV affects us all, whether we are infected with it or not.

What are you going to do about it?

Benny Cartwright is a staff writer with SDGLN who focuses on non-profits, politics, and higher education. Also known as "Mr. Pride," he regularly informs our readers about the various Pride celebrations happening throughout California (and Tijuana). Benny also writes a social column, giving a more in-depth look at his sometimes fabulous, sometimes crazy, but always eventful, life. He has written for a number of local publications over the years, starting with San Diego’s Update! newspaper in 2005. Benny is also involved with numerous community organizations, goes to grad school, and even has a "day job" – he’s one busy guy!