Challenges of Disclosure

Published 30, Oct, 2012

Ken Monteith: “Many people who are removed from HIV in their own lives have very little understanding about just how difficult it can be to disclose your status to someone when you don't know how they might react.”

Challenges of Disclosure

After the Supreme Court decision earlier this month, I am struck once again with the realization that many people who are removed from HIV in their own lives have very little understanding about just how difficult it can be to disclose your status to someone when you don't know how they might react. I have often found it difficult or scary to disclose my status, and I'm an educated white man with a job that I wouldn't lose because of my HIV. But even perched atop all of my privileges, I can see clearly how much more difficult disclosure is for someone who doesn't have the advantages I do. 

Number one on the list of immediate possibilities is rejection. Don't get me wrong: I'm not saying that anyone ought to be obliged to enter into a relationship or a sexual activity with which he or she is not comfortable, but there are many ways to express the discomfort. Some are clearly more considerate than others. String together a series of nasty rejections coupled with a lack of interest in learning or understanding and even the most stalwart of people might be excused for drawing the conclusion that disclosure is not such a good idea. 

Think of this as trusting someone with your most difficult secret. When you meet someone, you're probably not ready for that, especially if you have no indication of how that person might react. Yes, at the beginning you have less invested in the relationship with the person, but you also have not yet begun to build the trust that might put you in a position to share your difficult secret. If you wait until you have built that trust between you, you might find yourself in the curious position of being perceived as having betrayed your partner by not sharing your secret earlier. You clearly can't win on the timing. 

What could you be risking by telling a relative stranger about your HIV status? How about the right to determine who else will have that information? If I tell you my status and your reject me on the spot, how will you react when next you see me talking to one of your friends? Finger-pointing, whispering and avoidance will tell me that you have taken it upon yourself to tell others the secret that I was open enough to disclose to you. Oh yes, there are laws that would protect me from the invasion of my privacy that you are committing in speaking to others about my status, but these are not enforced with the weight of all the apparatus of the state like the criminal law is. It is up to me to have the resources, the knowledge and above all the courage to pursue the respect of my rights that you would have violated. Not very evident, especially when I might be risking going very public with my status in the judicial process of trying to have my privacy respected.

So now my secret is out there. What negative consequences could there be for me? Have a look at some of the irrational reactions that people in our society have to HIV and you might have a better idea. A survey published by the Public Health Agency of Canada in 2006 showed that 44% of people did not agree that people living with HIV should be able to serve the public in positions like dentists or cooks. In the same study 27% would be very or somewhat uncomfortable shopping at a small neighbourhood grocery store if they knew the owner had HIV/AIDS. 

Do you want something more recent? In 2011, the CIHR Social Research Centre in HIV Prevention and the Canadian Foundation for AIDS Research commissioned a study you can find here. There was some modest decrease in the percentage of people uncomfortable in situations where there is clearly no risk of HIV transmission, but very large parts of the population still retain those negative attitudes — 23% for the neighbourhood grocery store and 18% for working in an office with a colleague who developed HIV/AIDS. 

Add to these measures of attitudes the anecdotal experiences of people who have been denied or lost jobs — coincidentally with the disclosure of their HIV status by themselves or others — and you might understand the desire to exercise some control over how far that knowledge is spread. Forgive me if I'm a little reluctant to trust my social acceptance and my employability to someone I don't know all that well. And if they blab and I lose my job I can't count on the government to help me out with that situation, so the offender gets away with ruining my life. 

The statement that makes me the most angry (I recently defriended a couple of people on Facebook for this one, so you know I'm serious!) is the one that would have us equate non-disclosure with the intent to do harm to others. Why is it so difficult to believe that someone might just be looking to have as normal a life as possible, even while applying the contents of the counselling offered by medical personnel and community health workers and struggling with the fear of transmitting the virus to a partner, and not maliciously spreading a disease? That a person might just want to be loved and accepted, and not have to fight a battle against stigma at every turn like, say, in the grocery store or at the office. 

I continue to be mystified as well by the notion that the whole responsibility for HIV prevention is being put on the shoulders of people living with HIV, even as many of us struggle with the stigma and discrimination that comes from not knowing much about HIV. We don't have sex alone (well, at least we don't get prosecuted when we do that), so what of the HIV negative or unknown status partner: no responsibility to insist on a condom? No responsibility to even ask the partner about his or her status?

If I'm a pedestrian (here comes a crazy metaphor!) and I arrive at a pedestrian crosswalk with no traffic lights, do I get to just walk out there without looking out for the traffic? Would I be that stupid and yet bear no responsibility for what happened to me? I would think that, wanting to protect my own health as well as that of others, I would approach the crosswalk with a certain level of expected caution and cross when it is safe, not cast myself as the innocent victim of the driver who may have been mere metres away from the crosswalk when I boldly and blindly took my rightful place upon it because after all, the driver was not honking the whole way so how could I anticipate that a car might travel on a street? 

Yes, the example is ridiculous. I would have to insist, however, that the reality is equally ridiculous. 

We would all like to live in a world where we could disclose our HIV status and what would ensue would be discussion, education and compassion. We're not there, and I don't see a lot of effort to get to that place, least of all through a legal process that vilifies and criminalizes one tango partner while leaving the other to dance away without a care.