'Coming Out' About H.I.V. and Facing Down the Stigma

Published: September 10, 2013

 Q. Dear Civil Behavior: I’d like your advice in coming out as H.I.V. positive to friends and colleagues. I’m married to a wonderful man, 51, and have lived quite well with the virus for 15 years. I believe it’s important for the many others still finding out they are H.I.V. positive to see people like me who are living well and openly with the infection. While I’ve never specifically hidden the fact of my serostatus, it’s always been a bit of work to tell others. I find there’s concern that I’m sick. Some people fear I have a potentially life-threatening disease, others say they are “sorry” (what are they sorry for?), while still others imply that my behavior led to my infection (“he should have known better”). From your perspective, what’s your advice on how (or if) people who learn that they’re H.I.V. positive should tell others (I’m not asking about dating situations). And, how do you recommend that those I tell respond to my disclosure?” — Timothy Rodrigues, Healdsburg, Calif. 

 
A. First off, I want to commend you for coming out about your H.I.V. status in this public way. It’s not always easy. For instance, when I asked a friend of mine who is also H.I.V. positive what he thought about your question, he said sharply: “I actually don’t understand why this guy would just randomly tell other people. It’s not necessary.” Others on my Facebook page chimed in similarly, like this response, “You don’t go advertising to the whole world about diabetes, depression or such.” 
 
Well, we do live in a time when people are “out” about all kinds of health conditions, including Type 1 diabetes (Mary Tyler Moore), depression (Brooke Shields), Parkinson’s (Michael J. Fox) and cancer (yours truly). They do it to put a face on an often-frightening or misunderstood medical condition, to show by example how these illnesses are survivable. Somehow, however, H.I.V. remains different. Despite the enormous strides in treating H.I.V. disease, misinformation and stereotypes continue to abound and the way we talk about H.I.V. and AIDS often seems stuck in a time warp. No, it’s not a death sentence and, equally important, it’s way past time to stop playing the blame game with this condition. 
 
Dr. Frank Spinelli, a doctor who regularly treats H.I.V. and is a GMHC board member, told me, “Currently, living with H.I.V. is a chronic disease unlike when I began residency in 1995, when we told newly diagnosed patients they would likely die in 10 years.” Those who adhere to a treatment regimen, he said, are likely to live out their full life expectancy. 
 
While a great deal of attention is rightfully focused on the prevalence of new H.I.V. infections among young gay and bisexual men (and those in ethnic/racial communities), nearly 25 percent  of those living with H.I.V. are boomers, who, often having survived the darkest days of the epidemic, face new challenges like yours. 
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