November 9, 2010
Welcome to This Positive Life! We have with us Henry Ocampo. Henry, who was freshly out of college, had a good job, a loving relationship with his boyfriend and a new sense of freedom. But at the age of 23, he was diagnosed with HIV and told his CD4 count was perilously low. This news came as a shock: Not only did he work in HIV prevention, but he and his then-boyfriend, who was positive, always played it safe. Henry talks to us about living with HIV for the past 15 years; the stigma around being Filipino, gay and positive; and letting go of the fear of dying early.
So let's start from the beginning. Describe how you found out you were HIV positive.
I first found out when I was 23 years old, over 15 years ago. I was dating someone who was positive for three years. We were playing safe. We were using condoms. And I went to get my regular testing and it came out positive.
So what was your reaction?
Shocked. Numb. I felt very scared, disappointed. If you remember one of those peanuts, Snoopy TV shows, where you don't really hear the adults. Kind of go, "Wah wah wah wah." When I walked into the testing counselors to get my test results, after he told me that the test came back positive, it was just like a peanuts TV show. "Wah wah wah wah," for like the next half hour. I just remember them giving me a packet of information of referrals. And I just waited for my partner to pick me up and then we just went to the park and just cried all afternoon. That was pretty much the day of when I found out.
How quickly after you were diagnosed did you seek treatment?
One of the things I was really good at was being active in my health. I was able to get really good services: getting access to case management, getting to support groups, finding a doctor. I was really active in my first year, even though I was still reeling over finding out my diagnosis. But it took me a little while to actually just accept it in myself, even though I was actively pursuing support and services. It took me about a year even just to say I had HIV.
Like you said, you were shocked. It took you a while. What were you thinking? Were you thinking, "I'm going to die"?
Of course. It was basically, I was 23. It was the start of my new life, adventuring into adulthood. I finished up my undergrad, found a job. I'm living on my own, no parental support. I was finally in a relationship that I was very much in love. And I thought that this was the start of my life. And all of a sudden getting this diagnosis, it just felt like all of it was just gone. One of the things as well was that when I first got my blood work done, because my partner was already positive and we were playing sex, I would have expected to have been infected in the last six months or so. So I thought my -- I still had -- my diagnosis was kind of early. I wasn't one of those late testers, per se. But when it came back, I was just right above the 200 range for an AIDS diagnosis. I'm like, "This is going by really quickly." So at that point, I thought, "Well, if I've only been infected within the last six months or so, and it's going this fast, I don't have that much time left." So in my mind, I rationalized, I gave myself a limit somehow. I wasn't going to make it to my 25th birthday.
That's a lot for a 23-year-old to have to deal with.
It was. That's when I really sought services. I was able to get -- and that's one of the things I was really good at, getting to support groups. I was able to find mental health services for free.
What state do you live in?
California. I was in San Francisco. Services were really excellent. The people were very caring, but it really took me to actively go out there and seek services myself.
So you said in the first year you were positive it was really hard for you to admit that you were positive.
Did you disclose to anyone the first year?
I disclosed to friends, close friends. I disclosed to my work as well.
What were you doing at the time?
I was actually working for an AIDS organization, doing prevention work. So it was one of those things where it was also part of where the shame came from. Part of it was like, "Well, I'm an educator. I was doing prevention work, yet I became positive. What was going on?" That was one of the things where I felt betrayed as well because I thought I was doing what I was supposed to do. I had a partner that was positive but we used condoms all the time and so I don't know what happened. I still don't know what happened. It took me a while just to let it go, but we had to change the way we talked about prevention because of what I had to go through.
How did the conversation change?
That it's not 100%. Safer sex is not 100%. That there is a degree of risk regardless. One of the things as educators, we're here to give you the tools and the skills to help you reduce that risk. And it's up to you to decide on your own what methods or to what extent you want to keep yourself safe. But our job is to just provide you with the skills and the tools to do that.
We always felt like it was our responsibility when someone in our community tested positive. Like we didn't do what we -- like we put it on ourselves, that responsibility, and we learned that we can't do that. As long as the person set, as long as our clients or the community set, when they get tested, it was their choice to engage in whatever activities they wanted to engage in, but they knew how to lower their risk. And if they had those skills, then we did our jobs.
So you were still struggling with feeling guilty.
Did you also disclose to anyone in your family?
It took me a while. They were actually the last ones to find out. I first disclosed to them about my sexuality when I was around 19, 20.
How did that go over?
It did not go well. My parents -- I'm Filipino, youngest out of four kids. My two brothers are engineers so I was supposed to be the doctor in the family. Never really happened. But they just had these high expectations growing up. When I disclosed to them about my sexual orientation, their concern wasn't about me or the family. It was really about what other people in the community and our friends and relatives were going to think about us. My mom doesn't really speak a lot of English. Her eyes just kind of bugged out and started yelling at me in Tagalog, in Filipino, basically saying, "What are other people going to think about our family because of this?" It was one of the first times I got really angry at my parents. That their concern was more about other people and the perceptions of us than about me, what I was going through and trying to find their acceptance. So when I became positive, in my head I was just kind of like, "Well, if they reacted this way with my sexual orientation, 'What are other people going to think?,' how are they going to react with HIV? It's going to be even worse." And it wasn't going to be about me anymore. It was going to be about how other people were going to think about the family and why I brought this into our family. Another thing was I didn't know -- I felt like I couldn't tell them yet. Also, because for myself I didn't feel hopeful because I already put this time limit on myself of 25. So if I didn't have any hope for myself, I couldn't give hope to my family as well. And I didn't know how to tell them about this, about me having HIV, without giving them something to hold onto, when I didn't feel that way either. So that's why it took me a while to tell them.
You had to educate yourself more.
I had to educate myself, but also, I think it's more than just education. I think it's kind of learning to accept it, how to live with it. That it's not going to -- that's it's just a part of me, but it's not me entirely. That I still have a life. I still have goals. I still have dreams. That it's not going to take over my life.
Amazing. So at what point did you feel more hopeful?
When my 25th birthday came around. Like I said, I was really active in getting services for myself. Mental health, support groups, case management, all that stuff. So I was really well taken care of. One of the things that I had to learn was letting go of planning. I was one of those people who knew what I wanted to accomplish by 30, by 40. I wanted to retire by 50 years old. I mean I had my whole life planned. And how to let go of that and just kind of live on a day-to-day basis. For a while, I didn't plan past two weeks because I just didn't know. My friends also knew about it -- especially not after my 25th birthday. I had nothing planned. So what happened that was kind of amazing -- that was a turning point with that -- was that one thing I always wanted to do but was always too fearful to do was jump out of a plane, parachute out of a plane. So on my 25th birthday, all my friends knew about my situation, so we had a party just to celebrate.
The next day someone took me out to go parachuting. And it's one of those really scary moments, but also exciting. For me it was the day I didn't plan anything. So anything that happened, it was my extra day of living. So when we went on this plane, looking down on the earth, on the ground, looking at those little cars drive by, and just the open fields, and just feeling so alive because it was the day after of not planning anything. And just having that extra day. So even if the parachute didn't open or if there were some other complications, it was still that extra day that I had. And just feeling so alive jumping out the plane. That was my turning point, the way I looked at life.
What year were you diagnosed?
So this is right before --
Right before the medications, the HAART medications, yes.
So within those two years, you got on the meds.
Yes. I started in 1996 actually because my T-cell count was low to begin with and my viral load pretty much doubled and tripled within the first year. So once those medications were available, I immediately got on.
And they improved your numbers?
Yes, they did.
During this time, were you still with your boyfriend?
We actually were together for another year, but it was painful. I never blamed him at all because, for me, we did what we were supposed to do. And we still don't understand how it happened. Slip up, whatever, but we used condoms. But he blamed himself a lot. Eventually, it was too hard. We're still friends. We still maintain contact, which is great. But by that time it was too difficult and we broke up. Now I'm in a relationship for 12 years. And he's negative. And we're really happy.
Could you walk us through when you finally did disclose to your family?
That was also a difficult time for me as well. I was getting some medical tests done and I had some growths in my colon. I was waiting for some tests to come back to find out if there were cancers from that. And so I was freaking out of course. For me, it was such a difficult time because I could handle one disease. I can't handle two. It's just too hard.
That was when I actually broke down. "I just can't do this anymore. I need support." So that's when I decided to tell my family and I really have to respect them for how they reacted. I was so fearful of how they would react, where they would either be more concerned about other people's perceptions of our family. "How could I bring these diseases into our family?" Because that was pretty much their reaction. And so when I told them, I had nothing to lose at that point. So I told them a double whammy. "I have HIV and I'm also waiting for results for cancer." So it was --
Their mouths just dropped.
It just dropped. I mean how could they react? They cried, of course. But one of the things that I grew to love even more was that instead of shunning me, rejecting me or talking about how other people and perceptions of our family or "how could I bring this into our family?", they decided to take the other route. And they wanted to take care of me, which was not what I was expecting. I was kind of hoping for the best but expecting the worst. And they said, "Whatever it takes to get you better, we want to take care of you and if that means moving back home." I'm like, "No, I'm not ready for that." [Laughs.] But they were so supportive. And it's hard for -- I can't even imagine what I put them through. I mean it's one thing to hear about one disease, but to worry about one disease and a potential disease at the same time was really -- I can't even imagine what I put them through, but I really love and respect them for how they reacted.
What about your siblings?
I told them as well and they're supportive. My sister tells me she loves me all the time. We're not a very physically emotional family, touchy feely. We kind of joke around more than we say, "I love you," but she gave me a hug and told me that she loved me. And even like, there's no -- there's no issue, really. Even with my nephews and nieces that were born after I came out to them, I'm part of the family. I'm still their uncle. There's no --
There's no plastic silverware?
No, no. Nothing like that. Nothing at all. I think I'm even closer to them now than I was before because I didn't have to feel like I'm living this double life or have to hide certain things from them. So it's this big weight off my shoulders, just to be accepted, know that I'm being loved and that they'll take care of me if I need them.
That's a wonderful feeling.
It is. It's really amazing. Amazing.
So what has your health been like overall since your diagnosis?
Actually, really good, surprisingly. Considering that I started off kind of at a low point. I've been on medications since '96. I've been pretty adherent. I haven't had any opportunistic infections. I actually tell my doctor every time I visit him that I'm a boring client because I don't really have anything else, other than the HIV, to deal with. I've run a little bit more. My metabolism is slowing down a bit more as I get older. So I have nothing to complain about.
Let's talk about your current relationship now. You've been with your partner for 12 years.
I've been with my partner for 12 years and it's been wonderful.
How did you meet him?
Through friends. I can actually say that. I met him through friends. [Laughs.] I had some mutual friends. He came over, was just hanging out. We got introduced. We didn't actually get along in the beginning.
Those are always the best couples, the ones that kind of hate each other in the beginning.
It was really interesting because he was more of a corporate-minded person, very three-piece suits, no jeans, no tennis shoes, kind of person. And I was the total opposite. My biggest -- my shopping was pretty much at Gap. And I was also, at the time, kind of more of an advocate, colored my hair all the time, had piercings. So we didn't exactly click in the beginning. But we just started hanging out, became friends and all of a sudden, it just kind of grew. We started talking to each other every day. And it was just one of those things where we kind of looked at each other one day in the car driving, like, "So what's going on here? We're just together all the time. How do you feel?" "I kind of like you." "I like you too." "OK." And we just started from there. One of the things that was really interesting though was none of our friends knew. We didn't even know. We hung out a lot outside of the city, pretty much in suburbia and just hanging out. So when we had -- so we didn't exactly -- none of our friends knew we were together until about maybe six months or so actually dating, when we went to a community function, to a dinner. And we came together, sat at a table. And everyone's just like, "What's going on?" [Laughs.] And it was great. We've been together ever since.
And he's negative?
Were you at all concerned?
Of course. It's always a concern. It's always in the back of my mind. We had discussions about it. We're always safe. Even he says, for him as well, because he didn't really have -- he's seven years older than I am, but I was out longer than him.
And how old are you?
I'm 38, almost 39. But I've been out in the community for a longer time than he has. He came out in his mid 30s. And so -- where was I going with this?
You were you saying that you guys were talking and he's a lot older than you.
But in terms of actual experience in the gay community and HIV, I had a lot more experience than he had. So when we started dating, he also sought mental health services as well. Just "How do I cope with this?" for him to get support on his own, which is really good. I really believe in mental health. Especially because I was his first relationship, serodiscordant relationship with a positive person. So for him to put himself in that position was really a lot for him. So it took some time. And we talked about it a lot. I was like, "Well, you know you can always leave whenever you want to. I can understand there's a lot to deal with. So just let me know when it's too much and you can walk away. No big deal." But 12 years later, he's still around. We're stuck. [Laughs.]
And you still live in California?
What kind of work do you do?
I'm actually a federal contractor with Office of Minority Health Resource Center and I do capacity building with HIV organizations around the country.
And how has your diagnosis impacted your work?
I think that one of the things that, especially with the Asian/Pacific-Islander [API] communities because the numbers are low on a national level, but stigma and shame are really powerful still in our communities. One of the things that's kind of been, I don't know if it's a blessing or it's been an advantage for me, that I'm comfortable with myself. I'm comfortable talking about HIV, both the clinical aspect as well as on a personal level. And just to provide who's Asian, Filipino, living, talking about HIV or living with HIV has helped others come out to seek services as well. We don't really see that a lot nationally.
So I've been able to find people. People have been able to find me to talk about their status, and help them get services or come out, or being able to provide support on how they're dealing with it or even just dealing with medications or family, so it's been really -- it's nice to know that I can be there to help on that level. I have a story that's kind of interesting.
I have a friend -- a friend of mine that lives in Vancouver contacted me, had a friend in the Philippines who seroconverted and didn't know any services whatsoever and pretty freaked out and didn't know how to deal with it. And so we connected through the Internet, where I got introduced and started talking to him about his status and how I've been living with it and how I've been able to accept it. And so I contacted a friend of mine in Bangkok who I knew did a lot of international HIV work. So we could all -- all three of us kind of connected with this person in the Philippines, trying to get him into services as well as helping him deal with his family and his self-acceptance. Afterwards, this kind of feeling like, wow, this is kind of an amazing situation. We're dealing with an international scope of access to services that wouldn't have happened if my friend in Vancouver -- if I didn't disclose to my friend in Vancouver about my status and the connections I've been able to make through my work, both here in the United States and some internationally, especially in Asia.
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.
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.
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.