Thursday, March 13, 2014

Why Discussing Your HIV Status is so Important

by Nancy Wolff, Comprehensive Risk Counseling Provider

Let’s face it, getting the news that you have HIV is not an easy thing to hear. It certainly doesn't build the confidence or skills needed to tell others about your status, especially those who matter most. Yet, hearing that you are positive may mean someone else didn't tell you or did not know. Now, the choice is yours, just as it was theirs, whether or not to disclose your status to others. And the same questions they didn't address are there for you to answer:

  • How do you tell past, present, or future sex and/or needle sharing partners? 
  • What health professionals do you tell? 
  • Do you have supportive family or friends with whom you can talk?  
  • And how do you do this while maintaining your relationships with others and ability to continue having a healthy sex life?

In 1983, the Denver Principles were created by and for people with HIV/AIDS. They are a manifesto of rights and recommendations on how to live with dignity with HIV/AIDS. This includes recommendations to “Substitute low-risk sexual behaviors for those which could endanger themselves or their partners; we feel people with AIDS have an ethical responsibility to inform their potential sexual partners of their health status.”

Research shows that there is a continuum of people living with HIV (PLHIV): those who actively avoid telling others and those who approach the disclosure discussion with optimism and openness. Most people are somewhere in between.

PLHIV who approach disclosure with an optimistic outlook tend to have several people in their lives they can talk to about their HIV status.  They generally have at least one other HIV positive person they can confide in.  They also do not want to be rejected by others for disclosing their status, but they have friends and/or family whose acceptance helps reduce their pain.   They are committed to not spreading HIV to others (check out They stick with their medical care and tend to have better health overall. Some research even suggests that actively disclosing HIV status to others correlates with higher CD4 counts.  At the far end of the continuum, PLHIV who are very open about their status are publicly speaking and providing health education.

On the other hand, PLHIV who avoid disclosing to others also tend to avoid going to the doctor for HIV care, choose not to have anyone know their HIV status and are less likely to know anyone else who is also HIV positive.  When they have a stressful day there isn’t anyone there for them to talk to about it.  They deeply fear rejection from others so they keep their HIV status to themselves, even if their omission means they may infect others. Instead of developing healthy coping skills, they often seek comfort from drugs, alcohol and/or sex.  This eventually takes a toll on their physical and emotional systems, increasing stress.  And we all know what stress does to our health and overall being.  This can continue for many years, as HIV can take time to overwhelm the immune system.
So how does one approach the discussion of disclosure if they’re caught in the loop of avoidance? Building disclosure skills and feeling confident in how disclosing fits into your life is a process, but with the right support, you can adopt these skills and find confidence and dignity, while making peace with your diagnosis.
Medically speaking, an HIV positive test result in 2014 is very different than in it would have been in 1994.  While the medical advancements are promising, it can still be emotionally devastating.  Stigma is still a barrier to many getting the testing and support they deserve, but it doesn’t have to be that way.

As individual humans, we can feel like outsiders to what is perceived as ‘normal’.  So, it is completely natural to wonder if anyone could find us attractive and lovable if others knew our deep down secret. But it is the keeping of secrets that isolates us, not our perceived abnormalities.

Telling just one person and getting emotional support from them could save your life.  And it could save someone else’s too.  Mark S. King believes that if we could all be open about our HIV status, we could really make stigma a thing of the past. Disclosing can be a source of support and a means to empowerment.  It can reduce stress and anxiety by building confidence and clarity about your plan and your philosophy.

Disclosing to someone can turn out to be an experience that brings you together, as it was for Scott McGlothlen when he disclosed to a previous sex partner. He says it well. It is not just one person who is responsible. “Perhaps as humans who are messy and fallible, we are all just trying our best to desperately navigate these shades of grey,” which continue to shift the responsibility to discuss our HIV status.

Yes, disclosing your HIV status to another person can be scary. There may be a lot at stake: safety, friendship or family relationships, financial support, emotional support, the list goes on.  The Denver Principles declares that PLWH have a right “to as full and satisfying sexual and emotional lives as anyone else.” Given this, be cautious of taking the perspective that safer sex is ‘on them!’ Think twice about assuming that ‘everyone needs to take responsibility for himself!’ This type of avoidance translates to no one disclosing, no one discussing safer sex, and no one having safer sex.   That means the disease wins.

While it causes less anxiety in the short run to avoid talking about your positive HIV status, consider instead that approaching an HIV disclosure discussion with openness and optimism allows you to AVOID the anxiety of an uncomfortable visit later to the doctor’s office.

Here at CDPHE we want to empower everyone with HIV to stand for their right to happy and healthy sexual expression, as individuals and in relationships. We are here to help you develop the confidence and skills necessary to approach that difficult discussion. We are in your corner to help support you to disclose for all the right reasons:

  • To avoid new HIV infections (never assume you know what the other person’s status is!). 
  • To be clear and confident in yourself.
  • To reduce stigma toward you and those around you.  

Call us at 303-692-2632 to discuss the services we offer, free of charge.

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