Recently, my partner of four years ended our relationship citing my HIV-positive status as the main reason for the break up. He said he had been suppressing his discomfort with my HIV status and finally realized it was a problem. For a short while, I let this knock down my sense of self worth; I felt like I had a curse that I could do nothing
Over the years, I have heard many stories of rejection from people with HIV infection. Whether it be at the first on-line connection, in a bar, after the first date, or well into the relationship, rejection never feels good. Personally, I'm the kind of person who finds comfort in understanding why things happen and how people think. I am limited because I have never identified as an HIV-negative gay man. My first HIV test in 1985 was positive and admittedly, I can't empathize with what it is like for an HIV-negative person to date an HIV-positive one. But I can do my best to understand it -- and break it down. If I do this, I can hopefully avoid getting into the situation I recently found myself in.
In both my personal and professional life, I have had the opportunity to talk about this topic with many HIV-positive people, HIV-negative people, and sero-opposite couples. There seem to be three primary reasons why HIV-negative people are uncomfortable with dating HIV-positive people: ignorance, phobia, and a desire for unprotected sex.
Even 26 years into the epidemic, many people do not understand how HIV is and is not transmitted -- what is risky and what is not risky. What astonishes me most is the level of ignorance even in the gay community. I work in an HIV research clinic that conducts studies on recently infected HIV-positive persons. As part of the study, we learn how and why people become infected. Many of our newbies were more concerned with who they were having sex with than they were with what they were doing. The logic seems to be "As long as I avoid HIV-positive people, I will avoid HIV and do not need to practice safe sex."
The facts are what they have always been:
1) avoiding specific bodily fluids will prevent HIV -- and there are lots of ways to have sex and avoid these fluids, and
2) many new infections are transmitted by people who are so acutely (newly) infected that they are testing HIV-negative, but in reality, have a screaming high viral load
For this reason, sero-sorting is currently a highly debated prevention method. Safe sex is the only safe sex. There is no rational reason HIV-negative people need to fear infection if they are practicing safe sex. Ignorance is still partially responsible for new infections. I believe it is also responsible for good relationships ending or never happening in the first place. Ignorance about science plays a role too. Some people have heard the information on transmission, but don't believe it because they don't understand science. They say things like "well, you just never know," "you can never really be completely safe" and "condoms break." Well, we have known for years how HIV is transmitted, you can be completely safe, and when condoms break, it is usually because of user error.
HIV-phobia (I just made that phrase up) is different than ignorance and, I suspect, harder to deal with. There are people who completely understand how HIV is transmitted and not transmitted, but the thought of having sex with an HIV-positive person makes them nervous anyway. Have you ever been on top of a high building or a mountain looking down, and although you know you are safe and won't fall, you still get weak in the knees and don't want to stand too close to the edge? It's the same thing with HIV-phobes. They can intellectualize all they want, but it doesn't make them feel any better. Though it may be harder to remedy than the ignorance issue, every mental health counselor I've asked has told me that phobias are treatable.
Issue number three is the need for unprotected sex. This may be the hardest one of all to grapple with. I was surprised when my partner mentioned his need for skin-to-skin contact as one of his reasons for ending our relationship. I was surprised -- and worried. I think sexual desires, fetishes, needs, etc. need to be acknowledged and respected and, whenever safe, satisfied. But, again, the fact of the matter is that it is safer to have safe sex with an HIV-positive person than it is to have unsafe sex with someone who tests negative -- who may in fact have a high viral load. Like phobias, risky desires can be dealt with in counseling -- or other ways perhaps.
I am not a big fan of sero-sorting. It may invite risk of HIV transmission for HIV-negative people and risk of super-infection for HIV-positive people, not to mention other STDs. Also, it is hard enough to find someone to be compatible with. Why throw an unnecessary criteria into the mix? The key to a successful relationship is working through the issues in an open and loving way. The issues mentioned above can be dealt with like other relationship issues. Fortunately, there are many HIV-negative people who are willing to work through the sero-opposite challenges they face. And there are sero-opposite couples all over the world who make it work. In addition to the potential negative health consequences and interpersonal consequences of sero-sorting, what social consequences might there be? Are we creating a stigmatized community within a stigmatized community? Has this already happened?
I've known hundreds of people with HIV. We are a community that has faced unique challenges, dealt with stigma, disclosure, discrimination, health challenges, and loss in many forms. We have pulled ourselves up again and again, given each other support, and learned to love ourselves despite the obstacles. Because of the challenges we have faced and overcome, we have become a strong and loving community. We have learned the things that are truly important in life. I like to think of having HIV as a screening tool. Anyone who is unable to look beyond my virus is not the kind of person I want to spend time with anyway. So rejection is a gift -- and the loss is theirs, not ours.
Jack Degnan is the Clinical Trials Education Manager for the UCSD Antiviral Research Center in San Diego.