Why Jake Discloses His HIV Status, Over and Over Again
November 13, 2012
I remember that specifically. That was a red letter day.
That was a pivotal moment, I think. I can remember other folks coming in and saying, "I'm HIV positive and I'm undetectable." I really didn't know what that meant at that time, but I can certainly appreciate what they were celebrating.
We talked about who the first people were that you disclosed your diagnosis to. How do you decide whether to disclose your HIV status to someone? What's the criteria? How do you make the decision?
I decided early on that I wasn't going to let judgment and stigma stop me from putting it out there. I facilitate a support group for people who are newly diagnosed, and it's a conversation that comes up often. For a lot of folks, disclosure is huge. They're very afraid of being rejected. For me, I put it way out here, front and center. I let everyone know. Putting it out there in public, allows it, if nothing else, to be a measure of protection for me. So I disclose to anyone. I talk about it freely as though it were no different than me having diabetes, or maybe an ingrown fingernail, or something. I want it to be out here, front and center. Because for me, the people that would really reject me or treat me differently as a result, they'll get to that barrier and they turn and walk away.
So I never have to see that. I'm pretty fortunate.
How have the relationships changed, if at all, among your family and friends since you were diagnosed?
My grandmother, who passed away a couple of years ago, she was the one that really was a challenge for me. I disclosed to her early on, as well, and she was very supportive. A very religious woman, so every time I talked to her, it was, "How are you doing? I'm worried about you. I'm praying for you." A lot of our conversations were more about me comforting her about the disease that I'm living with. It took me a while to realize that dynamic -- that there are some people that I've disclosed to that it then becomes more about how they're dealing with it than I'm dealing with it. I find that to be an interesting dynamic.
So some relationships changed in that way, where I needed to make sure they were OK with these challenges that I was living with. But the people that are closest and dearest with me -- my parents and my ex-wife -- are still very close. My ex-wife was probably my biggest supporter. She swooped right in and really, really made a huge difference.
Do you remember what you might consider the best response, or one of the best responses, when you disclosed your HIV status to someone?
I don't know if it was the best response, but it was probably the most interesting and unexpected. After my ex-wife and I divorced, I dated a guy here in Seattle. We'd gone out a few times, and this was over the course of about a month. You know, we spent enough time to get to know each other a little bit. But I felt like it was time to disclose.
We'd gone to dinner. Then we were sitting in my truck, talking, by a park over in Queen Anne that overlooks the Space Needle. I said, "There's something I really need to tell you if we're going to pursue this any further." That's when I started sweating and got really nervous. That was probably one of the only times where I got a little nervous about exposing, because it was the first time in a dating situation that I was disclosing. I really didn't want to get that, you know, big rejection.
So it took me about 10 minutes to actually work up the nerve. Then I finally just spilled it and I said, "I'm HIV positive." I looked at the ground, and by the time I looked back up, his response was, "I love you," which floored me, because, one, we hadn't known each other that long. But apparently my making myself so vulnerable to him at that point was something he really connected with. So that was probably the most interesting response.
Did that bode well for the relationship?
Oh, no. That freaked me out. I thought, "Wow. You don't know me well enough to use that four-letter word."
So you didn't find that endearing. You found it a little creepy?
In that moment, it was comforting and endearing. But when I got home, and I really started to process it, I felt like it was probably not an appropriate response.
My current partner and I have been together for a little while. We actually just moved in together a few weeks ago. His response, I think, was great. It was actually on our first date. I said, "Hey, just so you know, so you can make informed decisions going forward, before I ask you out again: I am HIV positive."
He just said, "OK, thank you for telling me." And it hasn't changed the relationship.
How has it affected your sex life?
We've had a couple of good conversations about it. Me being the one that's positive, I feel a little bit of a responsibility to protect him. But him knowing my status, I feel that he has some decisions to make for himself. We try to minimize the risk of our behaviors. We're not perfect at it. There are those moments where a momentary lapse of judgment has happened, and then we've talked about it afterwards.
We actually were just talking a couple of days ago about him going and getting tested -- he's about to -- and what that means.
I think it's important in a relationship, when you're serodivergent, with one positive and one negative partner, to keep that conversation going. I'm undetectable. I have been for several years now. And I'm very adamant about taking my medications every night. I've talked extensively with my doctor and other doctors about the risk factors. I know that being undetectable makes me a much lower risk. He's been part of those conversations. But the reality is that there is still a risk factor. And it would weigh pretty heavily on me if he were to test positive and I knew that it was as a result of being with me.
So it adds a new layer of challenges to our relationship. But I think, as long as the conversations are ongoing and open, and we talk about behaviors and fears and risks and possible outcomes, hopefully, we can minimize any sort of undue stress on our relationship.
What kind of relationship do you have with your doctor?
I have a fantastic doctor. I've been seeing my physician now since about 2004. I very much went doctor shopping at that time. I had a great doctor, but then he moved his office and I needed to find a new doctor. So I went out and I saw different providers in the community. And I really felt a strong connection to him. I can call his office if I have a question, and they will call me back that very day. If I feel like I need to be seen immediately, they usually get me in. And what I love is that he will take the time to speak with me openly and honestly about all topics. It never feels uncomfortable. I never have to feel like there's any shame attached. So if it's about risk factors with certain sexual behaviors, or risk to my partner, or additional risks to myself, I usually go in.
I'm known for having a list of questions when I go in for my regular checkup. He'll usually ask me, "What's on your list?" And we'll go down through the list. He takes all the time that I need, which, to me, is a big part of having great care, because I trust his responses. He's not afraid to tell me, "You know what? I don't know. But let me find out for you." He never makes me feel like he's making something up. He has been practicing internal medicine, specifically focusing on HIV, since the late '80s. So he's really seen the progression.
He does some public speakings, as well, that I usually attend. So we have a great relationship.
You are on HIV medication now?
And how long have you been on medication? Since you were initially diagnosed?
I was diagnosed in July. I started medications in October. And I have to tell you that in the thirteen-and-a-half years that I've been HIV positive, we have come leaps and bounds. I mean, from the 34 pills a day and having to set alarms and timers and reminders and everything else to remember to take them, and this one with food, and that one without. We had a chart on the refrigerator for years. Now, I'm taking one pill a day, right before bedtime. It's phenomenal.
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