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.
|Who, What, When, Where, How and Why?|
To decide the pros and cons of disclosing in different situations, ask yourself:
Who do I want to tell? Who will support me?
It is mostly up to you to decide who you tell about your HIV status. You don't have to tell:
It is, however, a good idea to tell your healthcare providers, including your dentist.
When it comes to sex partners, there are legal duties (for details, see "Disclosure and the Law," below).
What do I want to tell?
You may, for example, want to tell certain people that you are living with HIV, but not how you acquired it.
When and where do I want to tell?
How do I want to tell?
Why do I want to tell? How might telling affect my life and the lives of those around me?
Other people living with HIV and people who work at HIV clinics and ASOs can help you think through these questions and debrief with you afterwards.
Some people choose to start with a general conversation about HIV, to gauge a person's response. Many people find it helpful to have pamphlets or phone numbers of local AIDS service organizations (ASOs) on hand so they can offer information to the person they're disclosing to. Trying to anticipate how the person you're telling might react can also help you plan how you will respond.
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.
Although who we choose to tell is mostly up to us, in Canada people with HIV have a legal duty to disclose their HIV status before sex that poses a "realistic possibility of HIV transmission" (see "Disclosure and the Law," below). Not disclosing your HIV status to sex partners can potentially lead to criminal charges. We can't go into the many issues around the criminalization of HIV non-disclosure and the different feelings they bring up -- that would be a whole other article -- but it is fair to say that these laws increase the anxiety that can come with the decision to disclose before having sex and in romantic relationships and that they make disclosure in general a much more complicated issue.
Since I have always disclosed to my partners, I didn't think that the criminalization of HIV non-disclosure would affect me -- at least not until a recent medical appointment. I have always been open and honest with my doctor about my sexual activity, believing that if my doctor has all of the facts, she would be better equipped to provide me with the care and information that I need to stay healthy (see "Telling Your Healthcare Providers," below). The last time I visited my HIV clinic, I met a nurse I had never seen before. She asked if I was sexually active and if I knew my partner's HIV status. When I told her that my partner was HIV negative, she asked me if I had disclosed to him. I told her that I had. She then said, "and you use condoms all of the time, right?"
The entire conversation with a complete stranger made me uncomfortable and her presumptuous question about condom use made me panic momentarily. Not knowing what would be done with the information I shared and feeling that it could somehow be used against me, I replied, "Of course, we use condoms all the time." As someone who has had an undetectable viral load for about 10 years, what I really wanted to do was to have an open discussion with her about the risks to myself and my partner if we did decide to have unprotected sex [for more on that, see the article "Sex and the Serodiscordant" in this issue].
After leaving the appointment, I felt angry. Once the nurse had established that my partner knew my status, I felt that should have been the end of her questioning and that it is up to me and my partner to decide whether or not we use condoms. A more open, non-judgmental approach would have been more helpful and would have created a safe space for me to ask questions and get support. I still believe that it's important to disclose all information to your healthcare team, but it is not always simple to decide just how much information you want to share and with whom. This experience caused me to worry that, ultimately, criminalization can create a barrier to receiving the care and support we need to maintain healthy relationships.
Although the thought of disclosure might provoke anxiety, for many people the end result is positive -- disclosure can bring friends and family into your circle of support. But it can also have serious negative impacts. For some, it can lead to the loss of "friends," rejection and in some cases even violence. If you have concerns about your emotional or physical safety when sharing your status, you may wish to:
Disclosure is a journey, and everyone travels it differently. It often starts with tentative, angst-filled steps, and over time it can become easier in some situations while remaining difficult in others. Many people find that it grows easier to determine when it is best to keep it private and when it is better to tell. Carefully choosing when and to whom you disclose can take you from feeling anxious and isolated to feeling supported. And solid support can make all the difference.
|Telling Your Healthcare Providers|
It's a good idea to disclose your HIV status to your doctors and dentist so they can provide you with suitable care. Knowing about your HIV and the medications you may be taking can help your doctors diagnose other conditions, help you avoid drug interactions and manage side effects. You may also want to tell your dentist because antiretroviral drugs and HIV can cause mouth and dental problems.
If you go for acupuncture, massage or other complementary therapies, you may choose to tell your complementary health practitioners, although this information should not affect the treatment you receive.
Healthcare professionals have a duty to maintain patient confidentiality. In most cases, it is considered professional misconduct if they disclose information you share with them without your consent.
|Disclosure and the Law|
In Canada, you do have a legal duty to disclose your HIV status to sex partners:
You do not have a duty to disclose your HIV status before having vaginal sex if your viral load is low (or undetectable) and you use a condom. It is not clear whether this also applies to frontal* or anal sex.
It is not clear how the law applies to oral sex (with or without a condom) or to situations where the condom slips or breaks.
* The term "frontal sex" is sometimes used by trans men instead of "vaginal sex."
Shari Margolese advocates for people living with HIV to ensure that they have an opportunity to be meaningfully involved in the research, programming and policies that impact their lives. Shari is a regular contributor to The Positive Side.