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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

Summer 2013

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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].

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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:

  • tell someone you trust (a close friend, relative, healthcare or social service provider) that you intend to disclose so they can support you
  • disclose in a public place
  • bring someone with you

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:

  • before having vaginal, frontal or anal sex without a condom, regardless of your viral load; or
  • before having vaginal, frontal or anal sex when your viral load is not undetectable (or not low), even if you use a condom.

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.

For more information, go to www.aidslaw.ca or check out chapter 21 of CATIE's Managing Your Health.

* 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.

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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.
 
See Also
TheBody.com's Just Diagnosed Resource Center
Telling Others You're HIV Positive
More News and Articles on HIV Disclosure
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Reader Comments:

Comment by: sunbae (moshi tz) Tue., Jul. 30, 2013 at 5:27 am EDT
thanks to be give sensitive information about hivs
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