Why Jake Discloses His HIV Status, Over and Over Again
November 13, 2012
What regimen are you currently on?
I take Atripla. I know that's one of those love-it-or-hate-it kind of drugs for a lot of folks. In the support group that I facilitate, that comes out a lot. There are those that think it's the worst medication out there, and they've had horrible side effects. I happen to enjoy the vivid dreams. My dreams are usually really good. So I sometimes can't wait to go to sleep and see what I'm going to dream about. Usually, it's some sort of rock star moment, where I'm onstage with some sort of celebrity. So I wake up feeling like I'm on top of the world.
That's a great attitude about a serious psychosis that happens when you fall asleep. I mean, you seeing it in such a positive light: It probably keeps it from veering off into something scary. That you look forward to it -- I think that that's great.
How do you access your HIV medications? Is it private insurance, or Medicaid, or you pay it up? How do you afford it?
I do have private insurance, and then that's supplemented by the ADAP program, or the Early Intervention Program, here in Washington state -- which may or may not change going forward. With our budget crisis that's going on here in the state, we're seeing services cut left and right. So I may be one of the ones at risk of losing that. If that's the case, my copays will go up significantly. Now, I'm only doing labs a couple of times a year, but I've also gotten to a place that I was told I would never get. When I was diagnosed and told I had a CD4 of 8, I said, "Well, you know what? I'm going to get back up to 600. That's my goal." I had a few doctors tell me that I would never achieve that goal. But I can proudly say that, in February of this year, I was up to 632 CD4 cells. So I'm pretty proud of that. I've worked hard for it.
To me, it's a holistic approach. It's not just taking a pill. It's watching my diet, exercising, not consuming excessive amounts of alcohol.
When you described just now how your T-cell count rose, you sounded like a proud athlete who had just had a touchdown, based on a lot of training. I mean, you take a lot of personal investment in that T-cell number and how it grew.
I take a lot of responsibility for my own health and well-being. I don't rely on my doctor to make everything better. To me, he's a tool. He's a place I can go for answers. He's a place that I can go for support and resources. But ultimately it's up to me to make the decision to take my medications, to eat as well as I can. I have my downfalls -- I love donuts, I love chocolate -- but I try to eat a somewhat balanced diet. I try to make sure that I take care of myself overall, both physically and emotionally.
And your viral load?
My viral load has been undetectable since early '99.
That's a very long time.
Yeah. Especially in the early days, those medications, they made me pretty sick. There were some days where I couldn't go to work, or I'd have to leave work. It wasn't always easy, but I took them. Anytime I doubted it, all I had to do was take a look at my daughter and realize that there was something that I had to live for. To this day, I call her my little angel, because she came into my life at a time where I really needed her. And she gave me everything to fight and live for.
Do you have any other habits to maintain good health?
Yeah. I will admit, I have an off-again, on-again routine at the gym, where I'll go and I'll hit it like six days in a week, and I'll hit it hard. Then I'll take a couple of months off.
For me, one of the biggest things has been learning to embrace my HIV status, not allowing it to bring me down, but lift me up. The more I'm able to get out in the public and speak about it, and talk to others about it and educate them, it empowers me and makes me feel a little bit stronger.
Having a great support system has been vital in my living with HIV -- quite successfully, I think, for many years now.
What kind of work do you do now?
I'm the program manager for a local AIDS support organization. We're now called Seattle Area Support Groups. But the organization was founded in 1984 as Seattle AIDS Support Group. It was founded at a time when people were dying quite often. We have a "Passages" section on our website that's quite extensive. It shows just a small glimpse of the number of people here in Seattle that were impacted, and passed away from HIV. I get goose bumps thinking about it, and I get a little emotional. Because it's really [heartbreaking] to me to look through our archives and see a lot of these guys that were my age, at the prime of their life, and they had goals, they had dreams, they had plans, they had a future ... and it was just taken away from them in a very short amount of time.
It also makes me extremely grateful that I'm here to hopefully kind of carry on that legacy for them. They founded this organization for people to come together and find support amongst themselves. I actually came to find that place when I decided I wanted to volunteer and give something back to the community. So I started facilitating a support group there.
I had no idea what it was going to bring into my life. The people that I've met have been amazing. And trying to provide to the community has been a tremendous outlet of support for myself.
How did you become involved in HIV activism?
I joined the HIV Planning Council for the Seattle King County area, which is now the Transitional Grant Area. It includes two other counties: Snohomish and Island Counties. I saw a flyer at a local organization here where I see a case manager. And something spoke to me. I looked at it, thought about it. The next time I was back in the office I saw it again. It was still there; it was still kind of speaking to me. So I jotted down the number and I gave them a call. I interviewed, and joined the Planning Council about a year ago. It's a body that's responsible for allocating Ryan White funds to service categories for people living with HIV. So it's a way to actually have some impact on the services that some of our peers are receiving in the community.
Through one of their subcommittees, we decided that last year, during the legislative session, that we wanted to go meet with lawmakers and we wanted to advocate for folks living with HIV, and have a little bit more of a voice in the process. So a small group of us came together and formed our own little advocacy group, and put on a training to teach people about the process, about how to use their personal story, and how to convey that in an effective manner.
Then we loaded up and we went to Olympia and spent a day meeting with legislators. That's when I realized that it just takes some effort and speaking up to actually make a difference. Because some of the legislation that came out last year directly reflected the message that we took to them.
It was very empowering to know, one, that they were willing to listen to us; and, two, that they took that back to their peers and made some decisions based on what people with HIV were actually saying that they needed.
Since then, I've just continued to stay a part of that group. Now we're looking to branch out and make it more of a statewide effort.
What do you think are the biggest issues that need fixing in HIV today? And how do you tell people how to do something about it?
One: I think we just need to reignite the conversation. We need to get folks talking about it again. I think that with the advent of such great medications, there's become some -- I don't want to use the term "complacency" but -- a little bit of this, just, acceptance of it. And so I think that's one issue, that we need to start having a conversation about it again. We need to have a little bit more of that sense of urgency that once was. People aren't dying anymore, but it's still a life-changing experience.
The other thing that I've had many conversations about with colleagues and friends and peers in the community is the issue of stigma. You know? And prevention messaging. A lot of it is, "Protect yourself, because you don't want to get this disease; it's really bad." There's some truth in that. But at the same time, it's perpetuating the stigma and further taking away from those individuals who already have it.
So the question that comes up, that I don't have an answer to, and that I don't know that anyone does at this point, is how do we effectively communicate, "You need to protect yourself; you need to make smart choices; you have a right to protect yourself," without further stigmatizing folks that are already living with HIV.
Compare for me how you feel about having HIV now to your feelings when you first learned you were HIV positive.
When I first learned I was HIV positive, I was afraid, I was ashamed, and I was angry. Now, I'm quite proud and OK with it.
What advice would you give someone who had just found out they were HIV positive?
Give it time. Know that this process is different for everyone. My story is unique to me, and I know that not everyone is at the place that I'm at. But for me, the one thing that it took was just time: time to accept it; time to get used to it; time to embrace it and get out there and wave my little flag now.
So time is one of the things that I've noticed. This support group that I do for newly diagnosed folks: I can kind of watch them. They'll come in that first time terrified, scared. "My life is changing."
I ask them usually at the end of their first time in the group how they're feeling. And the one thing they always say is, "Relieved." So I'd say give it time. Also, don't be afraid to reach out and find someone else who's got some experience with it. Because it's not a deal breaker. It's not a death sentence anymore. It does change your life; I'm not going to lie. But it doesn't always have to be for the worst.
Is there anything that you might have wanted to include that we have not discussed?
Just letting folks know that they do have a choice. It's the one thing that I look back on and think: I don't have any regrets; I don't want to go back in time and change anything ... but I wish I had empowered myself with a little more knowledge when I was younger. I thought I knew something about HIV and AIDS but, in reality, I knew nothing. I knew what I'd heard on the news, and tidbits of information here and there. But especially in the gay community, I think it's important for folks to know what they're up against, and know what the reality is. And know that they have choices.
This transcript has been lightly edited for clarity.
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