February 11, 2010
Over the past 20 years, I have watched people living with HIV/AIDS suffer and struggle with disclosing their status. The fear of rejection keeps many of us quiet but causes others to reveal intimate information at inappropriate times and places--such as on a first date in a cozy restaurant, with the people at the next table dipping into the conversation, as an HIV-negative friend once experienced when her dinner companion told her he was HIV-positive.
Deciding to share your serostatus is one of the most difficult things a person living with HIV has to do. Unlike on television, where reality-show participants sometimes disclose their HIV status in such a way that allows editors to script the conclusions, real-life disclosures occur in real time; the outcomes are uncertain. We wonder: What will this person think of me? Will they reject me? Try to hurt me? Wonder what "horrible" thing I did to deserve my fate? And after sharing my most intimate business, will I lose the relationship?
When and whether we decide to tell often depends on how we believe the person will react. If we think the person will be cool about our status, we're more likely to tell, or to tell sooner. If we think we'll be rejected or get some other negative reaction, we may either consider not telling or actually not tell at all. Our approach also hinges on how vulnerable we are willing to feel and how much we are willing to risk in the relationship. That said, I do not believe that it is ever acceptable to trick or harm anyone.
Recently a colleague shared findings from a small research study suggesting that people who tell others about their HIV status may not always experience as much stigma from their loved ones as they feel within themselves. This makes me wonder whether part of what we dread is having someone reinforce feelings we've already internalized about living with HIV/AIDS. I know that after two decades of absorbing messages that I am "not good enough" and/or just not "normal," I have internalized feelings of shame, guilt and helplessness. Is this part of what makes disclosure so difficult--that I dread learning that other people will think the same negative things about me that I sometimes secretly think about myself?
I came of age as a person with HIV/AIDS in an era where I was indoctrinated that it was my responsibility to disclose early and often, whether or not it was my intention ever to have sex with the person I was telling. Intellectually I understand this approach, but emotionally it puts me in a straitjacket. What if I don't want to disclose to you? What if I want to become friends first? And if I'm not interested in sleeping with you, why do I have to tell you my personal business?
I had--and still have--nothing to lose and everything to gain by disclosing my HIV status; I am willing to risk much to regain my personhood and shed my lingering sense of internalized oppression. But I have to admit that had I gotten infected today, I might have approached my life much differently. An HIV diagnosis is no longer the end of the world. Many people now know that if you are diagnosed early and do what the doctor tells you, you can live a pretty normal life--and life span. You do have to learn how to protect yourself and your partners, but maybe you don't have to tell everything to everybody.
Given this new reality, I am reconsidering my options. I want the choice of telling my friends and colleagues--or not; maybe it's none of your business. And for once, it would be nice if my prospective partners took responsibility for their own health and asked me if I had HIV so that I wouldn't have to carry the burden of telling them first.
Unlike what we see on reality television, life cannot be edited or played back to change the result or make us into someone we are not. People living with HIV/AIDS should have the option of deciding when and where we will reveal our HIV status. We should never do it because we're following some rigid rule from a bygone era. But when and under what circumstances should it happen? The answer isn't always clear. Check back on the fourth Tuesday of each month as I share my thoughts about the etiquette of when and why we should tell.
Vanessa Johnson, J.D., who has volunteered and worked in the HIV/AIDS field for approximately 14 years, is executive vice president of the National Association of People With AIDS (NAPWA).