Positive Singles Speak Out About Living With HIV
I'm lucky enough to have the opportunity to work with a website called PositiveSingles.com, a dating and community website for people living with sexually transmitted infections (STIs). It's fulfilling because I get to create original content about topics that are important to people who have HIV and other STIs. For my 2016 kickoff piece for the site, I reached out to other HIV PositiveSingles.com members and asked them specific questions about living with HIV. Here are the questions, and my and their answers.
(Full disclosure: My work for PositiveSingles.com is as a paid consultant, which includes promotional duties.)
1. What Is One Thing That Living With HIV Has Taught You?
For me, living with HIV has taught me that I am stronger than I ever thought I was, and I can make it through anything put in my way.
From others, I received answers that spoke of learning to love themselves more, wanting make healthier sexual choices and learning who their true friends are. In addition, people mentioned the need to educate others about HIV prevention, that it takes a strong person to ask for help and support, and how having HIV is easier when it isn't done alone.
2. How Has HIV-Related Stigma Impacted Your Life?
HIV-related stigma is a beast of a problem and one that is going to take a lot of work on everyone's part to fix. Much of it comes down to a lack of education about the disease. With the general public still thinking they can get HIV from sharing a drinking glass, it's no wonder that many are afraid of people who are HIV positive. Even living in a large metropolitan area like Chicago, HIV-related stigma is alive and well.
When I was working in the cheese department at Whole Foods, I cut my hand while slicing, and blood sprayed everywhere. Now mind you, HIV does not live well outside of the human body and even if it did it can't magically jump into another body. Nevertheless, I got a call from the human resources department to discuss the incident because one of my fellow employees was upset that there was blood everywhere and I was (openly) HIV positive. Never mind that hepatitis C is much easier to spread than HIV and can live in dried blood for up to two weeks. It didn't matter: The fear of HIV and ignorance about how it is and is not transmitted caused me to be treated like a leper.
Others had stories similar to mine and worse. Some had lost their jobs after their HIV-positive status came to light. Others spoke of being cut off from friends and family. Some lost their significant others. Another common story was how they ended up being afraid to tell anyone because they had heard their friends and family speaking negatively about HIV-positive people. The fear of being rejected turned HIV into their deepest and darkest secret and shame.
There is hope, however. Those in the know must be vigilant in helping to educate those around them. Whether you are negative or positive, when you see or hear misinformation being spread, say something. Point people towards information on the disease and help them to understand that what they say has a real and lasting impact. Sites like TheBody.com are excellent online resources with easy to comprehend information on HIV transmission and prevention.
3. What Do You Wish Every HIV-Negative Person in the World Knew About HIV-Positive People?
If I could snap my fingers and there was one thing everyone in the world knew about HIV, it would be that it cannot be spread through touch. For many of us, it's hard to grasp that in 2016 people still think that HIV can be spread by kissing or hugging, but the reality is that the world over this is still a common misconception.
Others wanted the world to know that they are still human beings even though they have this disease. Many said it's not a death sentence anymore, and they did not wish to be treated as though they were sick. One person said that because of HIV people require more love. Finally, a couple of people wanted to say: It's not a gay disease; anyone can get it.
4. What's the Hardest Part About Dating and Living With HIV?
Dating is no walk in the park for any of us, regardless of our HIV status. Adding HIV into the mix is like throwing gasoline on a fire.
For many of us, living with HIV brings fears of being unlovable, dirty or somehow less than others. You start to think that you'll never find love: No one will want to be with you because you are HIV positive, or it's easier to be alone because heaven forbid you pass the virus to someone else.
This is why status-specific dating websites can be helpful for people living with HIV and other STIs. Knowing that your dating prospects are also living with an STI takes away some of the fear of dating. It's also helpful being among a community of people going through the same types of experiences. Having others to talk to about what you're going through can help immensely.
The responses I received from others to this question were all strikingly similar. They mostly centered on the fear of having to disclose their status and the fear of the impending rejection once they did -- or, if the rejection wasn't immediate, that there would still be a change in others' behavior, visibly noticeable and disheartening to say the least. It made them feel less than human. It isn't easy, and it isn't fun.
5. If You Could Tell Your Newly Diagnosed Self Something About Living With HIV, What Would It Be?
My response and that of many others to this question were quite similar. Nearly all of the people surveyed replied with a variation of telling their former selves that they are stronger than they realize, that this is not a death sentence and that they are going to be OK.
There were a few responses along the lines of "please wear a condom" or "don't trust that person when they say they are negative" or "don't believe him when he says he's not cheating on you." These are perfectly understandable. We look back at things that have happened in the past and think that, if we'd just done that one thing differently, we wouldn't be in the predicament we're now in. I try not to get caught up in that way of thinking because all you are doing is playing the blame game and being hard on yourself, which never does anyone any good.
When you're first diagnosed, it can seem as if your whole life is crumbling around you, there's nothing you can do to stop it, and you're going to be alone the rest of your life. But then life goes on. Days turn into months, and months turn into years. Then, at some point, you realize that you're doing all right. It's a great day when you have that realization. For me, that happened when I started telling those closest to me that I was HIV positive. The more I shared my status, the more empowered I became. I felt stronger, and I was.
I'll end this piece with a request and a call-to-action for all of my fellow positive brothers and sisters: I ask that you have the courage to be open about your disease with those around you. By being open about your disease, you not only help yourself, you also help those around you and the world as a whole. I realize that it can be an issue of safety -- there are times when disclosing a positive status could put someone in harm's way. I am not advocating for people to disclose in situations like that.
However, for those of you who can, I ask you to have the courage to shout your truth.
Being open about living with HIV and helping to educate those around you helps to reduce the shame and stigma associated with the disease while giving you access to realms of personal power that you never knew existed. You'll be better for it. I promise.
[CORRECTION 5/3: An earlier version of this article did not fully describe the nature of the author's relationship with PositiveSingles.com. We have corrected the text to reflect that Richard Cordova is a paid consultant for the site.]
Richard Cordova is an independent fundraising and business development consultant, writer, full-time student and group fitness instructor. He has been HIV positive since 2002, and believes that the key to eliminating HIV-related stigma is for HIV-positive people to live openly with their disease.