This post is made possible by support from the Let’s Stop HIV Together campaign. All opinions are my own.
In the late 1980s, I explained how to use a condom to hundreds of men I didn’t know who had called the Florida AIDS Hotline as they tried to figure out what to do about the new challenge threatening their health. I had been volunteering and acting as an on-call supervisor at a local crisis hotline, and it was awarded the contract for the AIDS Hotline. I was not an ally yet; I was just doing a job.
Over on the west coast, Mark S. King was also volunteering for an AIDS-related project. When he chose to volunteer for AIDS Project Los Angeles (APLA) in 1986, he was doing more than “just a job.” Having been diagnosed as HIV positive in 1985, he needed to do something, and coordinating the APLA speaker’s bureau was his outlet. He thought he would be dead soon and craved immediate gratification.
As it turns out, Mark did not die in 1986 (thankfully). Although he lived in “three year increments” for quite some time after his initial diagnosis (hear more about that in this video with his friend, Lynne), he has now been living with HIV for 31 years and the virus is undetectable in his blood stream due to treatment (although the antibodies which result in an HIV+ test result will always be there).
When I had an opportunity to interview Mark recently, I learned that many facts about living with HIV have changed. Specifically, the definition of “prevention” is much broader than it was back in the late 80s. For me in 1988, it meant telling strangers “don’t have sex” or “use a condom.” Mark says the most powerful preventative among his community at the time was: funerals.
In 2016, Prevention and Living with HIV Are Different
In addition to condoms, there are now more options for prevention:
- PrEP (Pre-exposure Prophylaxis) – people at high risk for HIV can now take a medication that lowers their chances of getting infected. Learn more here.
- PEP (Post-exposure Prophylaxis) – People who have been potentially exposed to HIV can take antiretroviral medicines (ART) after being potentially exposed to prevent becoming infected. Learn more here.
For people who have tested HIV+ but are on treatment, remaining on treatment in order to keep the virus undetectable is an option. Partners who go this route should know that:
- · Everyone’s “undetectable” status is only as good as their most recent test.
- · This choice clearly requires a level of trust between partners.
Simple Conversations Can Dispel Misinformation
Ironically, having not batted an eyelash throughout Mark’s book, which chronicles his experiences owning a phone sex hotline and frequent cocaine consumption in the 80s, I found myself hesitating to ask what he meant when he said several times, “I am able to have sex safely with my husband because I am on treatment.” Finally, I just admitted I needed to know more about what exactly he meant.
That’s when he clarified that an HIV+ person on successful treatment can’t transmit HIV. This has been the case for five years.
If I hadn’t asked or he hadn’t been willing to share, I would not have known. The solution to clearing up my confusion was a simple conversation.
“At Risk” Can Mean Anyone
To be perfectly honest, I am not sure if a single person I know and interact with here in Tallahassee is HIV positive.
Even though I don’t currently have someone in my circle who is HIV+, my circle has gotten a heck of a lot bigger since I have gotten involved in (some say addicted to!) social media.
Is there someone among my 2500 Facebook Friends, 9500 Twitter Followers, 3000 Instagram Followers, or 225 Snapchat Friends for whom I can make a difference?
I can’t be sure, but I know that doing nothing is not an option when:
- Youth aged 13 to 24 accounted for more than 1 in 5 new HIV diagnoses in 2014.
- Young gay and bisexual males accounted for 8 in 10 HIV diagnoses among youth in 2014.
- At the end of 2012, 44% of youth ages 18 to 24 years living with HIV did not know they had HIV.
- My peers are re-entering the dating world as decades-old marriages end and/or discovering that their partners were not monogamous and may have put them at risk.
Will someone identified in one of the above bullet points see something I post and feel less alone, more fortified to proceed with testing, more confident in engaging in a simple conversation?
Even if the people in the populations mentioned above don’t see one of my posts, maybe you will (and I know you’ve read this far, so you are equipped to help!). Stigma is eliminated one chat at a time, and I am asking you to help make a difference.
A Year Can Change Everything
I love the fact that this post is going live on June 26. Last year at this time, rainbows proliferated as same sex marriage was legitimized. However, the year has brought with it the flip side of the coin: those who spread hate.
I was so very excited to speak to Mark. We both sort of threw out the pre-written interview questions and just …. talked. The only moment of silence was when our conversation wandered to the tragedy that occurred at the Pulse Nightclub in Orlando. Mark told me how he, at 55, an award-winning activist in a happy marriage having overcome so many hurdles, was shaken to the core, immediately transported back to feeling like an unsafe sissy at risk of daily beatings. I stumbled for words, failing to respond adequately but empathizing at the same time.
What does that have to do with HIV?
It has to do with HIV because it’s hard enough for some people to come to terms with their own sexuality, much less the strategies they have to employ in order to protect themselves and others from HIV infection. Feelings of being unworthy can be the most difficult barriers to self care. As Mark says, the enemy is a virus, not our humanity.
What Can One Person Do?
If you still don’t understand HIV, ask.
You can get the facts.
If you are ready to help, click here for tons of resources.
You can get involved and share a story.
You can get materials to share.
My journey to being an ally was, in retrospect, pre-ordained. I am grateful every single day that I was put in that little room talking to all those strangers about condom usage. I heard their fears. I went myself for an HIV test (never mind the fact that the behaviors I thought put me at risk were, um, hardly risky). For the long version of my ally story, Not About Me, click here.
Yes, Mark is HIV+ but the part that came through to me was our commonalities. We laughed about the fact that we both have “old fashioned” AOL accounts. We shared some fun word play as we exchanged messages. We talked about how each of us goes about life trying to live with joy and humor.
I don’t know about you, but I’m all for more joy and humor, and a lot less stigma.
Wife of one, Mom of two, Friend of many. My pronouns are she/her/hers.