If, When, Where and How to Say "I Have HIV"
Disclosing That You Have HIV Is Something Every Person Living With HIV Struggles With; Careful Planning and Solid Support Can Go a Long Way
My mother and two sisters sat beside me as I received the news over the phone that I had tested positive for HIV. They showered me with love and reminded me that they would always be there for me. Now I had to tell my father. My dad had warned me to "be careful out there" when I started dating after my divorce. I was terrified he would shun me or be disappointed. When I met with him, I got straight to the point: "Dad, I have some bad news: I just found out that I have HIV." He reached out, took my hands in his and said, "Don't worry, Shar. We're going to get through this together." I was surprised and relieved by his reaction, and for the most part he remained supportive until he passed away five years later.
Telling my father that I had been diagnosed with HIV was one of the hardest things I ever had to do. Since being diagnosed 20 years ago, I have disclosed my status to thousands of people. Some of those disclosures have been very public -- on TV and radio and at major conferences. Others have been more personal -- to family, friends and lovers. Even though most people have been supportive, it is the personal disclosures that have been the most stressful because of the fear of being rejected by those I care about most.
Since my diagnosis, I have seen dramatic changes. HIV used to be a death sentence; however, with appropriate treatment, people diagnosed with HIV today can live a nearly normal lifespan. And we've learned a lot about how to significantly reduce the risk of transmitting the virus. So that should make telling people that we have HIV a whole lot easier, right? Sadly, as too many people know, the stigma and discrimination surrounding HIV are still going strong. For many women and men, whether or not to disclose our HIV status remains one of the most difficult and daunting decisions. But most of us disclose anyways because there can be huge benefits: We can be supported, we can free ourselves of the burden of a secret, we can get the healthcare we need, we can talk with our sex partners about preventing transmission and we can educate ourselves and others.
Gordon, aged 60, and Jim, 55, a couple from rural southwestern Ontario have been together for more than 20 years. Both men are Native community workers who, like me, have been living with HIV for nearly two decades.
Gordon recalls that day, back in the early '90s, when he received a phone call at work asking him to come in to receive the results of a series of medical tests he had recently undergone. He was told to bring someone with him. Because he knew few people in his new hometown of London, Ontario, and his boss was someone he felt he could trust, Gordon asked his boss to accompany him. That afternoon, Gordon learned he was positive.
While absorbing the news in the week that followed, he told nobody. The one person he intended to tell was his partner of one year, Jim, who at the time was living in another city. But for the moment, the only other person who knew was his boss. (In almost all cases, an employer does not need to know this information. See "A Hard Day's Work" in the Winter 2012 issue of The Positive Side for more about disclosure at work.)
Days later, when the boss asked Gordon to work on the weekend, Gordon declined because he was already scheduled to work at his second job. The boss then proceeded to share Gordon's secret with Jim, who he had met when Jim was in town and dropped Gordon off at work, and others. "Out of spite, he used the information against me," Gordon says. "After my boss found out I had HIV, everything around me started to fall down like dominoes. One day I heard my co-workers talking about someone having AIDS and I realized, 'Wow, they're talking about me.'" Gordon left his job shortly thereafter, feeling deeply betrayed by someone he had respected and trusted.
Gordon's experience highlights two of the possible risks of disclosure: stigma and the chance that people will not respect your privacy. According to a 2013 report published by the Ontario HIV Treatment Network, other reasons that stop some people from disclosing their HIV status include feeling that they lack a strong social network, feeling ashamed and guilty about their status, homophobia and being concerned about burdening others. Nevertheless, research also suggests that in most situations, the significant benefits outweigh the risks and that most people feel little or no regret after disclosing.
Following this fiasco, Gordon eventually decided that if people were going to be part of his family and journey, he was going to tell them. His mom was immediately supportive but his dad took longer -- at first bleaching everything Gordon touched. With the help of Gordon's mom, his father eventually came around, as did many of his 27 siblings and half-siblings.
Like Gordon's father and many of his siblings, people's reactions often evolve. It's worth remembering that upon hearing the news, some people might at first be shocked -- even fearful, critical or angry -- and need some time to digest it. Chances are that their initial reaction won't be their last. For Jim, who also tested positive, gaining the support of his family took time.
Shortly after he received the call from Gordon's boss in London telling him that Gordon was HIV positive, Jim got his own positive test result. He was devastated. He now faced the task of a double disclosure: telling his family that he was HIV positive and that he was gay. Although Jim feared he would be abandoned and ostracized, he gathered his parents, brother and sister together. Feeling defensive and fully expecting a homophobic, judgmental response from them, he braced himself and blurted out: "I'm gay and I have HIV. Deal with it." But he ultimately found support from his family, first from his brother, who was quick to squash gay and AIDS jokes at his factory workplace in defence of his brother, and later from his mom.
For the most part, if, when, where and how we disclose our status are personal choices. There is no one-size-fits-all roadmap to guide us. Instead, we need to judge each situation: Is this a person I want to disclose to? Will he or she keep what I tell them confidential? Or is this someone I can't really trust to have my best interests at heart? Research shows that in situations where we choose to tell, the more carefully we plan and prepare beforehand (see "Who, What, When, Where, How and Why?," below), the more likely we are to have a positive outcome.
When it came to disclosing to his two sons, Jim was more careful. His sons, from a previous marriage, didn't learn that their dad was gay or HIV positive until later. "First they got to know Gordon as my friend," Jim says. Then the two men introduced the kids to other HIV-positive couples, including same-sex couples raising children. When the boys were 11 and 13 years old, Jim and Gordon took them to a retreat for families living with HIV. "We decided to tell them at the camp, where we could all get support and the boys could talk and share with peers in the same situation." The boys' response was typical for kids their age. One of them asked, "You aren't going to die, are you?" to which Jim responded, "Not if I have anything to do with it." Twenty years later, HIV is a non-issue with their now-adult kids.
When it comes to dating, everyone is different. Some people tell right away. Others wait to see if the relationship looks promising. Personally, I prefer to tell sooner rather than later for two reasons. First, my HIV status is widely known and a quick Google search would disclose on my behalf. Secondly, I want to protect myself. Even though I am generally very public about my status, it remains difficult to disclose in intimate situations. Putting it off can offer a reprieve, but it can also increase my anxiety and make it more difficult for the other person to accept.
This article was provided by Canadian AIDS Treatment Information Exchange. It is a part of the publication The Positive Side. Visit CATIE's Web site to find out more about their activities, publications and services.
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