This Positive Life: An Interview With Henry Ocampo
November 9, 2010
I want to talk about some of the stigma and silence in the Asian/Pacific-Islander community. What are some of the things that you're seeing? Are you seeing maybe some young men thinking they're not at risk or not knowing they're at risk?
It's a lot. Part of it is because the data shows that we still have low numbers. So I think there is this perception that we are at low risk.
Low numbers but yet on the rise.
But on the rise. If you look at the MMWR [Morbidity and Mortality Weekly Report] report especially in June 2008, there's a report that says that for API MSM, HIV rates have actually increased 255%, which is huge.
And yet we're not talking about it because the overall numbers are low, but the rate of infection is increasing at a dramatic rate. But people are still looking at the overall numbers.
And thinking --
It's still not an epidemic. It's still not an issue. But we are at risk and no one is talking about it. So there's this perception, I think, in the community that, "Yeah, it's just not going to happen." And yet I've met people and have friends who have seroconverted in the last several years, from D.C., New York, California, Hawaii. And it's just amazing to me. And it's frightening, especially some of the situations. I have a friend in California who called me from the ER, who's been a longtime community activist. And he found out because he was sick. He went the ER and he found out that he had PCP [pneumocystis pneumonia]. This was about within three, four years ago. "How could this happen? And in California." Because the perception's out there that APIs are not at risk.
Yes, and it should not have happened, that it would have gone that far for him to have PCP.
"I like to help people learn to accept them living with HIV and getting services. And so when it comes to shame and stigma, when we talk about shame and stigma, I like to start with the individual person first because nothing can happen unless that person learns how to accept it and deal with it and seek services."
For him to not even be testing. Do you deal with a lot of younger people in your work?
I work mostly with organizations then direct services. On a personal level, I still get connected with people because I'm willfully out about my status. People tell me about their friends of friends of friends that I get connected to. So it's really interesting. There was this one time a friend of mine told me about another friend who seroconverted and was still dealing with a lot of stigma and shame. I actually saw him on the street, walking towards me. And I saw that he's been on medication for a while because you can tell from the face. And I had this kind of -- I guess he saw me having this look and he ran away, turn around and ran away. And I haven't seen him since. But I heard from our mutual friend that he actually moved away from the city because he didn't want to deal with people finding out and moved somewhere else. That's heavy to hear that. Because for myself I like to help people learn to accept them living with HIV and getting services. And so when it comes to shame and stigma, when we talk about shame and stigma, I like to start with the individual person first because nothing can happen unless that person learns how to accept it and deal with it and seek services.
There's such a dual stigma. If you're gay, there's a stigma. Then if you're HIV positive, there's another stigma.
And then if you're a minority, there's another. It's just one on top of another.
It just stacks up.
How do you think HIV has changed you? You did HIV work before you were positive, but how has it changed you since your diagnosis? I know you said you used to like to plan all the time. Are you still that way now?
I've learned to think about long term. One of the things that we, my partner and I, when we check in with each other and tell each other, "I love you," we also tell each other, "Do you still want to grow old with me?" "Yeah, I'll still growing old with you." For me, that's even a bigger statement than "I love you," because thinking that I will be around in the long term is huge. So that's our saying to each other. I think it's been difficult. I can't say there haven't been better roses, dealing with stigma. I've been lucky to be able to be out in my work, to get health care, to be able to access services. I think part of that too is because I'm actively seeking services as well. But it's been difficult. It's been really difficult.
What are some of the difficulties that you've had to deal with?
I guess always coming out, always having to feel, "Does this person need to know?" So it's always a coming-out process, especially with new friends. When is it a good time to tell them? I think just dealing with health as well. If I'm sick, if I start getting sniffles, "What does this mean? Do I need to go to the doctor's? Do I need to get antibiotics? Is it pneumonia?" That's what kind of goes in my head. I think also with my partner, I always worry about what's going to happen if something happens with me and my health. Is he going to be taken care of? Will he even, especially because of gay marriage laws and depending on where you're at, will he have access to take care of me if I get sick? We also own a house together. What's going to happen to that? So all these things left in my mind. And I'm at an age where I start thinking about retirement and long term.
There's a lot going on.
A lot going on. But for me as well, it's nice to actually be at this point to think about that.
Because at 23, you didn't even think you were going to live until 25.
"There are people who genuinely care about you, about your well being, about your health. It's a matter of reaching out and asking for that help because it's too much of a burden for one person to deal with. It starts right there. And everything else will fall into place."
No. So to think about, "What am I doing? I have to start planning for my retirement. I got to start planning about later in life." What is this? This is all so new to me. And it's exciting as well to think about these long-term things. That I am going to be around for as long as possible. So it's a blessing, at the same time, it's a challenge.
So what advice would you give to someone who's just recently found out they're HIV positive?
That there's hope. I think one of the things, there are services to help you. There are people who genuinely care about you, about your well being, about your health. It's a matter of reaching out and asking for that help because it's too much of a burden for one person to deal with. It starts right there. And everything else will fall into place.
I think one of the interesting things and the most powerful things you brought up, your stories when you talked about, you really sought services, even before you were ready to deal with your diagnosis personally, you were just like, "I need this. I need that." I think that that's really, really important for people to know. You have to be an active participant in your health, in your medical being. You have to be empowered to a certain extent to say, "I need help."
Yes. And one of the things in the beginning, it wasn't really about the medical services, really. It was finding other people who were positive and my initial question to them was, "How do you learn to live with this? How do you live with this disease?" And so it was really kind of learning from what others have gone through as well, that I feel like I can give back to folks who have recently seroconverted.
Have you met people who feel they don't want to be in support groups?
Yes, I have. And that's their choice because they feel it's a lot more of a private issue. But at the same time, I let them know that I'm there. If there are questions, if they just want to -- making them feel like they're not alone in their struggles dealing with the disease. Not only with self-acceptance, but maybe even with some of the side effects of the medications, how to come out to your family, to your potential sexual partners, friends. So that they have someone just to talk to.
And with that, we have to bring this interview to a close. It's been such a pleasure, Henry. Thank you.
This transcript has been lightly edited for clarity.
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.
This article was provided by TheBody.