Heidi Nass, Madison, Wis., diagnosed in 1996
I don't know what the best response is. I will tell you that a common experience I would have is people wouldn't mention it again.
They wouldn't freak out or run away or anything, or say anything really hard for me or inappropriate or offensive. They just would never bring it up again - like I had never said it.
I would even sometimes come back and say, "I'm sorry if I overwhelmed you. I know it can be a lot. It's a scary thing and I'm really sorry if it was too much."
"No, no, no, I'm very glad you told me."
That was often the reaction and then it would never come up again. It's just kind of a weird feeling. It didn't feel authentically like there's so much exposure to HIV that you realize, "Yeah, I'll add you to the list." It wasn't that, it was just more, "I don't know what to say. I can't approach this."
My husband -- the man who eventually became my husband -- he stood out to me because he started asking me all these thoughtful questions: "How much of your life do you think is HIV? If you were to make a pie chart of your life, how much is HIV? Do you think that it prevents you from trusting people? Do you think it affects your desire to be in a relationship?" Things like this, and I remembered thinking, "Who is this person?"
What was the worst reaction you got when you were disclosing?
I haven't had any terrible reactions. I was talking to a person recently who's a correctional officer. He was guarding a patient we had in the hospital. He and I were talking, and he started to say something that made my guard go up about, "Oh God, what's he going to say next about people with HIV?" I blurted out, which is not characteristic for me, "I have HIV, just so you know."
It was really my way of saying, "Before you say the next thing you're going to say, I want you to at least know that you're talking to someone who has this." I think there have been a few times like that, where I've end-run a potentially bad situation. I haven't had terrible situations.
For me this feels bad: I'm not saying it's terrible, but it doesn't feel good for me personally when I will tell someone -- which is, by the way, a very personal and difficult thing to say no matter how used to it you are in terms of saying it -- and that person will then very quickly say, "Oh, how'd you get it?"
Wow, that's their first question? Not "How are you?" or "How's your health?" or "How are you doing with it?" or "How long has it been?" but "How'd you get it?"
Very quickly you go from being this person who's just sharing. You've chosen this person to tell this to and what comes back to you is, "You're an object. I get to start finding out all these pieces of you."
Asking somebody, "How'd you get it?" -- especially in a casual way -- to me is hard, because no matter what the answer is, it's personal. Breast milk is personal. Needles are personal. Sex is personal. It's no small thing to tell someone how you got HIV.
It was hard for me for a long time to not assume I was being judged. Oh, you want to know if I do something you don't do. You want to make sure I'm doing something that you don't do. You want to put me in a box. You want to say, "Oh, she's promiscuous. She was a drug addict. I see, OK."
It took me a while to understand and it was actually only through the help of loving friends who would listen to me very patiently who would say to me, "You know, that's not always true. People don't always know anybody with HIV. For them, they're shocked. They're sad. In that moment, they may not be doing their best. All they can think of is, 'How did this happen to you, this person I know and like?' You have to give them some room there to have their reaction."
That was a good lesson for me, that I can't presume what's in people's hearts based on one question. All I do know is that it doesn't feel that great to me. My deal is, when someone asks me, "How'd you get it?" I say, "Why do you want to know?" I want them to claim it. Sometimes, people will say, "I'm just curious." Wow, OK, you're just curious. My answer is really, really intimate. For me, it's this intimate part of my life that wasn't without pain and difficulty.
That was a bit of an imbalance for me. I think it's incredibly important to share these things, because it helps us understand where risk is, and that it's often in places we don't expect it. Many of our stories are exactly that. I also think there is a necessity for a great deal of respect around the issue.