Talking about the ‘D’ word—disclosure
Bridgette Picou

Once I have a desire to say something, in general I say it. I can temper my thoughts and tongue in situations where I think it makes sense to do so, but I like and believe in the power of open conversation for avoiding misunderstandings.

The value of open conversation increased for me as I learned to live with my HIV status. You know, because of the “D” word. No, not that one, the other one. Disclosure. Disclosing status should be an open conversation. It gets easier, but I don’t know if it ever evolves to being simple. Too many layers to consider. Who, when, how much to say, and it’s rarely the same twice because everyone is different. 

I don’t know how your disclosure story is evolving. For me as a cisgender woman, in many ways it has given a small sense of empowerment. Strange concept, right? HIV giving a sense of power? I’ve gone from not being able to imagine telling anyone and writing sex off completely, to being able to be matter of fact about it, but also keep it a personal conversation. I don’t feel the need to convince anyone of who I am or beg for affection or for someone to date me. I’m better able to negotiate the conversation and the sex.

Negotiating sex or negotiating intimacy is a name for a concept folks do all the time that I had never heard of until sometime in my adulthood. (It is not about payment for sex.) It’s often that we take for granted situations, or don’t even know a thing is a “thing” until science or psychology or the medical establishment puts a name to it. In a general nutshell, Negotiating Sex is the idea of having conversations about sex before the sex to maximize pleasure, minimize danger, discuss limits and desires, and may (should!) include sexual health discussions. It equalizes the right to say no, the balance of power and the ability to control your sex life. I’m not leaving men out of this conversation. While traditionally, men wield the power in sex dynamics, if you are same sex loving or live outside of cis/hetero traditional partnerships, this concept rings true for you as well! While it is something we should and can do as people, many, like me, have never heard of it, or if we have heard of it, feel powerless to put into practice.

Having to do the big “D” takes an amount of courage. The stigma surrounding HIV makes most people feel like it is the worst thing in the world. For me personally, it’s not. Having to disclose and, in essence, lay myself bare, gives me the boost I need to ask the hard questions in return. I don’t know if it’s the shock of my disclosing I’m living with HIV, or just that I have the nerve to be living my life out loud, but men seem to really struggle when I turn the question back on them.

Do you know your HIV status? When was the last time you were tested, if ever? Do you have a history of other STDs? What does sex look like for you? The discomfort I can see in their body language and on their faces. The hemming and hawing of trying to make excuses about testing. The transfer of whose responsibility it is to do so. For the record, having someone else tell you their sexual history and that they are STI (sexually transmitted infection) free, does not excuse you from getting tested yourself nor mean you are necessarily STI free.

Perhaps it’s just the mental shift of having to go from judging my positivity (pun intended), to having to judge and examine their own sexual history and choices in the same conversation that gives them pause. Like, how dare I question them when I have this disease, right? I’m “supposed” to be grateful they are even considering having sex with me.

Let me encourage you, outside of disclosure, to make it a practice to negotiate sex. To find the balance in your needs and desires vs. your partner’s. You should ensure the sexual health of your body regardless of HIV status through open communication. To ask the hard questions in the short term is to get the comfort of knowing in the long run.  

Be well. You matter.

Bridgette Picou, LVN, ACLPN, is a licensed vocational and certified AIDS Care Nurse in Palm Springs, California. She works for The Well Project-HIV and Women as their stakeholder liaison. Bridgette is the president-elect of the Greater Palm Springs Chapter of ANAC (the Association of Nurses in AIDS Care), and a sitting member of the board of directors for HIV & Aging Research Project-Palm Springs (HARP-PS). Bridgette’s goal is to remind people that there are lives being lived behind a three- or four-letter acronym.