Counterpoints: Disclosing Your HIV Status
By Frank Pizzoli
Samuel Rynearson
Journalist Frank Pizzoli is a 71-year-old, cisgendered, white, gay male who has been HIV-positive since the ‘80s. Samuel Rynearson is a 31-year-old, cisgender, gay male who has been HIV-positive positive since 2016. He works as a Medical Case Manager for Alder Health Services, where he has also provided HIV-STI testing and outreach. Rynearson learned of his HIV status when he was 24. Each has provided HIV case management services to people living with HIV, although at different times during the AIDS crisis. They share with each other and readers their unique experiences of disclosing their HIV status.
Frank Pizzoli: On June 5, 1981, the Centers for Disease Control first declared there was a public health emergency they named Acquired Immune Deficiency Syndrome. That historic announcement set into motion nationwide efforts by gay men and their allies to take care of those people around them who were sick and dying. These unprecedented efforts lead to the establishment of AIDS Service Organizations nationwide. One of those organizations is your organization, Alder Health Services. I was one of many people who volunteered to bring the agency into existence, where so many individuals first learned of their HIV status. Samuel, what was your experience upon first learning of your HIV status?
Samuel Rynearson: I was diagnosed at a time when medical advancements allowed me to live a normal life. My HIV does not have a major impact on my daily functioning. Even so, I was uneducated when I was first diagnosed. I really did think that I was receiving a death sentence. I was able to quickly educate myself and realized that my diagnosis wasn’t a death sentence. But initially I was scared.
FP: After educating yourself, you reached out for services?
SR: Finding care was a really streamlined process. I found it easy to set up the medical care I needed and to make sure I’d be able to access my HIV medications for an affordable price. Thankfully, and unlike so many older gay men who were judged my doctors, I’ve had the privilege of never feeling judged by the medical professionals who’ve taken care of me after my diagnosis.
Frank Pizzoli
“The gay community certainly has its fair share of growing and learning to do regarding HIV” –Samuel Rynearson
FP: And then you began the process of disclosure to those around you?
SR: Disclosing my status came in waves. My first thought was, ‘How am I going to tell my boyfriend?’ We were in an open relationship so in the back of our minds there was always the possibility of getting an STI.
FP: At this challenging point in time, did you second guess yourself?
SR: All the ‘what ifs’ flowed through my head: ‘What if he breaks up with me? If he thinks I’ve been lying? Or starts treating me differently now? What if I’ve infected him?’
FP: You relied on the strengths of what you’d established in your relationship?
SR: We had been together for six years at that point and I was so scared of losing him. And having all that stress on top of trying to get on track with my own health.
FP: In other words, an HIV diagnosis is so much more than just medical information in a chart?
SR: It is. But I told him and he comforted me, letting me know that he still loved me and that we were going to get through it together. He came with me to my first HIV appointments. I can’t imagine what it would have been like for me to do all this alone. Opening up to my boyfriend strengthened our bond with each other. We’re still together in a house that we own and an art business that we run.
FP: Support is the foundation of any successful HIV treatment. In my day, there were roving, rolling, changing networks of volunteers who took it upon themselves to look after others, at a time when our government and society shunned those with AIDS. Are there HIV support groups out there today?
SR: There are a ton of support groups available for all kinds of folks.
FP: After your boyfriend, you turned to family? Friends?
SR: Telling my family and friends was a whole different beast. I ended up telling my mom and my stepdad first. There I am crying, so emotional, scared that they’re not going to understand.
FP: What was their reaction to your disclosure?
SR: They countered my emotionality with calmness. They offered me constructive next steps, which I found helpful. I was in a very emotional state and my mom and stepdad were able to acknowledge my struggle and validate my feelings.
FP: Taking the steps to disclose turned out better than you anticipated?
SR: Having my family’s support focused me to work on a plan to manage my HIV and stay healthy.
FP: Next you told your dad about your HIV?
SR: Very shortly after telling my mom and stepdad, I kept my momentum going by telling my dad. He had a more pronounced emotional reaction to my news. We shared a good cry together. I reassured him that everything was going to be okay, that I was doing what I needed to in order to get my HIV under control. He was as worried as I was before I educated myself about my future. For me, it was reassuring to know that he wanted me to be healthy and happy.
FP: Friends came next?
SR: The last wave of disclosures came with my friends, who were super easy to tell—although I didn’t tell all my friends immediately. I spaced out my conversations about it with them. I waited until I was healthier, undetectable, and more confident and knowledgeable before telling all of them. They all reacted with concern and support.
FP: Sounds to me like you empowered yourself with what resources were at hand.
SR: I empowered myself by being authentic. By doing what I love to do with my artwork. Life is too short to waste it doing stuff that doesn’t make you happy or give you a sense of satisfaction. I also turned back to creating. As I mentioned before, I have an art business with my boyfriend, which I was really motivated to engage in after my diagnosis.
FP: Thou shalt not forget about being creative during times of stress?
SR: I’d stopped creating for a while before my diagnosis which, I think, gave me the extra motivation to make a lasting mark on the world by spreading joy through art.
FP: What are your thoughts on PrEP? [Pre-exposure prophylaxis (or PrEP) is medicine taken to prevent getting HIV. PrEP is highly effective for preventing HIV when taken as prescribed. PrEP reduces the risk of getting HIV from sex by about 99%. PrEP reduces the risk of getting HIV from injection drug use by at least 74%.]
SR: PrEP is amazing! I really wish I would have known about it before I contracted HIV. PrEP was very much a thing when I got my diagnosis and it would have absolutely stopped me from contracting HIV, but I didn’t know about it until afterwards. When my boyfriend HIV tested, he was negative.
FP: Now that you’ve made it through to the other side of, let’s say, the HIV tunnel, you’re more aware. What’s important for readers to know about PrEP?
SR: London School of Hygiene and Tropical Medicine reported recently that the prevalence of chlamydia, gonorrhea, and early syphilis was 23.9% at initiation of PrEP. That same measure was 72.2 per 100 person-years during PrEP use. In plainer language, individuals on PrEP, although protected against HIV, are not practicing the safer sex in order to not contract other STIs. The gay community certainly has its fair share of growing and learning to do regarding HIV, and what PrEP does and does not protect against. What’s hopeful for me is watching the gay community respond proactively to the recent Monkeypox outbreak.
FP: We all need to know that at the end of the day, we are a resourceful community. All the tools for health and wellness are out there.
To get answers to questions or to access resources related to HIV or AIDS treatment or clinical trials, contact the National Institutes of Health's HIV Info Center at 1-800-HIV-0440 or ContactUs@HIVinfo.nih.gov
Journalist Frank Pizzoli is a 71-year-old, cisgendered, white, gay male and a longtime HIV survivor. His work has been published by Raw Story, Huffington Post, Brooklyn Rail, abc.com, White Crane Review, Gay & Lesbian Review Worldwide, Instinct, POZ, HIV Plus, AlterNet.com, Body Positive, New York Blade News, and Washington Blade, among many others. His work is included in the anthologies Conversations with Edmund White (University of Kentucky Press), and Smashing Cathedrals (ITNA Press). Pizzoli’s advocacy is noted in Queering the Countryside: New Frontiers in Rural Queer Studies (NYU Press), His HIV work is chronicled in Out in Central Pennsylvania: The History of an LGBTQ Community (Penn State University Press).
Samuel Rynearson is 31-year-old, cisgender, gay male who has been HIV-positive positive since 2016. He works as a Medical Case Manager for Alder Health Services, in Harrisburg, PA.