Tell us a little about your life.
I live in South Los Angeles with my husband. We were married in September '05.
I work at the Center for Health Justice in West Hollywood as the women's health educator. [The Center for Health Justice works to empower people affected by HIV and incarceration. It offers prevention, treatment and advocacy services.]
I also used to work as a treatment adherence coordinator at [the AIDS service organization] Women Alive, doing intake, outreach and the outpatient clinic. Women Alive writes fact sheets on different HIV topics, new medications, and medical updates, and they do support groups.
I'm also an AIDS activist. As HIV-positive women, I believe we need to have our voices heard. We have to advocate for our own health needs in order to ensure that we get the best medical care and have equal access to the newest and best medications. I'm a member of ATAC (AIDS Treatment Activists Coalition), a national coalition of people living with HIV/AIDS and their advocates, working to improve research and treatment access.
I also do public speaking -- I work with the African-American Community Development Initiative -- it goes into black churches and trains ministers and pastors about HIV and AIDS.
Where did you grow up?
What did you want to be when you were a kid?
When I was a little girl I always wanted to be a nurse because my mother was in the medical field. She wasn't a nurse, but she was a unit secretary, so she knew a lot about the medical field.
What kinds of work have you done?
At the time of my diagnosis I was in school working on my degree -- I'm a social worker -- and I was working part-time. Then I dropped out of school. Now I'm going back to school to become a nurse. My goal is to work with people who have HIV.
Tell me about your partner.
I'm a newlywed. I met my husband a couple of years ago. It was quick. But he had known me for two years from being in the community. He came through the door of Women Alive seeking services. He was thinking about joining the heterosexual support group at Women Alive for HIV-positive men and women. We talked over the phone first and it was an immediate connection. I had visualized that he was probably going to be tall and dark but then when I saw him he was a shorty like me. I said, "He's a client, so I'm not even going to worry about it." So we did the intake, and we knew some of the same people. We ended up exchanging numbers, and that's how we ended up talking. He's very outgoing, very nice and compassionate, and loving.
What do you like to do in your spare time?
I like to read fiction and sometimes nonfiction. Right now, I'm reading the Holy Bible. I'm starting from the New Testament.
Are you a religious or spiritual person? Do you attend a church?
No, I'm not religious. That's a manmade thing to keep control. But I am a very spiritual person. If I didn't have any spiritual belief or connection, I'd probably be dead.
How did you find out you were HIV positive?
My ex-boyfriend wrote me from the penitentiary. He told me he had tested positive for the virus and that I should go get tested.
How have your feelings about having HIV changed over time?
Wow. A lot of emotions. At first, I was angry. I was upset. I was ashamed. I was even more upset with myself, because I kind of had a feeling that there was something wrong with him, but I couldn't quite pinpoint what it was. He had donated blood, and they had written him a letter telling him to come back in because there was something wrong. And I had a feeling that he might have been HIV positive.
And I was shocked. Even though I was emotionally prepared by disclosing the information that he told me to my mom. She was my support. But when you actually see the results that it's positive, it's like, "Oh my God, that's true."
I've forgiven him. I did write him what was going on and we attempted, when he was released from prison, to get back together. He said that he was going to continue to have unprotected sex. And I was like, "Oh, you have lost your mind -- I'm done with you."
How long do you think it takes to process a diagnosis?
To be honest with you, it took me a couple of years to process my diagnosis. I was depressed, but I was still functioning. I wasn't stuck in bed -- I had to go to work. That was my coping field pretty much. Until I went out on stress relief, stress leave, in the year 2000. And that was the first time I was able to walk into a support group. The first support group that I went to was Women Alive.
What advice would you give someone who has just found out they are positive?
The advice that I would give a person who just found out is to not get stuck in the depression, and don't get stuck in your work because that will allow you not to deal with the situation -- it keeps the focus off it. I would recommend they take a little time off to regroup, find out the services they need and can access. There is help out there, whether you're newly diagnosed or long-term. There is treatment available if a person needs to be on medication; there are support groups; there are mental health services. Once you have all the services that you can access, then you can slowly move your way back into your normal routine. I wish I could have gone straight to Women Alive as soon as I was diagnosed. But I was always working.
I think what works best is when a person understands the importance of health care and of their treatment regimen, how it works in the body and how it suppresses the virus so that the immune system can be boosted; understanding HIV, period.
How has HIV changed you?
I'm truly grateful. That's for sure. Grateful that God allowed me to see a better day. I don't take things for granted anymore. When God allows me to wake up and see another day, I take full advantage of it. I work in this field because it helps me to see, to stay grounded and to not forget where I come from. It's also about me giving back to someone else.
For some people I've talked to, it changes their lifestyle, how they used to live -- now they feel healthier and are not abusing themselves anymore. That's what happened to me. I didn't use drugs or anything like that, but now that I'm HIV positive, I have to eat healthier, I have to not get stressed out about stuff that I don't have any control over. Because people could say something to me and I'd just blow up. So it has helped me to really deal with myself and with issues.
When did you first realize that you were African American?
My first job in college. My supervisor was Caucasian, and she happened to make a remark. There was a movie that had come out and I don't know if it was Boyz N the Hood, but it was depicting how some people live in South Central. She made a comment that was really stereotypical. That's when I realized, "Oh, OK, so this racism is real." Of course I'd read about it in school, but to actually experience it, that was my first moment. I was too stunned to say anything, but I couldn't believe it.
How have you learned to deal with racism?
I always remember what my grandmother told me -- that people are going to be who they are. But I can't belittle myself or let other people's opinions make me. I just have to continue to be original and who I am. So, you know racism exists, it's sad, but it does exist, and for me, I just have to continue to fight it.
Particularly, I see racism in HIV and AIDS when it comes to public policy, to funding. It may not be overt, but you can read between the lines and see it, because now that we know the face of AIDS has changed to African-American women and people of color, the gay white boys are really fighting us. The HIV and AIDS medical system was designed for affluent gay white men who were dying. Now that people are living longer and it has changed to people of color, a lot of gay white men are really upset because the funding is going to switch. They're starting to get really upset, starting to do underhanded stuff so that they can continue to get the money.
For example, when they do their statistics or when they do studies. It's like if you're looking for apples, you're going to go to the apple orchard. You know what I mean? It's not even and it's not fair. Especially when it comes to women -- it's like they really could care less about a women's needs, because women come with packages. We have children, we need transportation, we need child care. They want to eliminate all the supportive services and just keep the medical. If a woman doesn't have a support group, child care, transportation, she's not going to stay in care. That's not going to happen, because as we know, we put ourselves on the back burner so that we can take care of our families, and by the time we get ready to take care of ourselves, sometimes it's a little bit too late.
Gay white men need to accept the change. It's as simple as that. They need to accept the change that HIV is not just about them. It's everybody -- this is a human disease, not just a gay disease.
What is the biggest challenge facing African Americans today in terms of HIV?
I think the biggest challenge facing African Americans today in terms of HIV are social and economic factors. A lot of us don't know how to read. A lot of us have not finished high school. Many have had poor education, no jobs. Lots of people do not trust the medical community. If you take all of those, low self-esteem, low self-worth, no housing, and the fact that some people don't know that they have access to services. A lot of people feel if they become HIV positive, how are they going to pay for the medication? So they're not aware.
Are there any specific aspects of African-American culture or identity that give you strength?
Our strong spiritual connection with the church, with family. I'm fortunate in that I do have a strong support system within my family. We understand living with the virus. I think that's an advantage. Our spiritual connection, family, and then knowing how to survive.
What is the biggest change you'd like to see in HIV treatment, prevention or education for African Americans?
The biggest thing I would like to see is the providers being more culturally sensitive, breaking the barriers of stereotypes. I've had experiences where I've disclosed that I was HIV positive when I went to a doctor, and they immediately think I was a prostitute or a drug user, something like that. And that's not the case. I'm a housewife and I was infected by my husband.
Prevention shouldn't be geared only to those target populations -- the sex workers, the IV drug users. Prevention needs to be universal. It needs to be targeted to anyone who is having unprotected sex, who has gotten or is getting tattoos, drug-to-drug contact. It needs to be across the board.
Do you think the Bush administration is doing enough for the black epidemic?
They're not doing enough. They need to put more Ryan White CARE money across all Titles [services], and not just medical care. You still need supportive services. Twenty-five percent needs to be geared toward women -- across all Titles -- because women are the fastest growing group.
How would you grade Bush's performance?
I'd give him an F.
What are your fears and hopes for the next generation of African Americans as they face the risks of HIV?
We have to change policy. Things are changing, but the policy is not changing. So if it takes us women and [organizations like] Women Alive to change it, then so be it. Particularly in the funding, because it all boils down to funding.
We see it every day, the absurdness of stuff that happens to women in this field, especially women of color. [Organizations like] Women Alive, though, I think they do a good job -- their executive director is not the type to just lie back and not say anything. She's going to speak her mind and she's going to speak what's right. She's training all the women that work there on the things that are right in this field.
You said you speak in churches. What kind of responses have you had?
Where I speak mainly is black churches because of the stigma that the black churches have, or what they think a person with HIV looks like. I've had a lot of positive experiences. People have always welcomed me. People always told me that they need this information.
Historically, for African Americans, the black church is where you get all your information. So the black church needs to be educated about the issues that concern African Americans, and HIV is one of them. It needs to be looked at as a health issue, not as a demonized issue. Did you do something bad because you've got diabetes? Did you do something bad because you have high blood pressure? No, it's your behavior that puts you at risk.
What has your health been like since your diagnosis?
The only thing that has happened to me was when I was exposed and sero-converted to HIV -- I got really sick with what I thought was a severe case of the flu. But ever since I was diagnosed, I've been healthy. I haven't had any HIV-related illnesses. In fact, last November marked four years that I haven't been taking HIV antiretrovirals.
Why did you decide to stop treatment?
I was part of a study -- a second-generation non-nuke drug trial, and that medication had caused my liver enzymes to become elevated, so they had to stop all my drugs. That's when I told my doctor I would like to stay off the medication completely. So that's been four years now.
How did you choose your current doctor?
I've been with him three years now. My employer told me I had to start using the insurance if they were paying for it, so that's when I did a little searching. I found out that Kaiser [Kaiser Permanente Medical Center] at Sunset and Vermont in Los Angeles is the best. They have been in the epidemic since it started, so their doctors are really experienced with HIV patients.
Do you think you are getting the best care possible?
I think I get really good care. My doctor and I sit and talk for a good 30 minutes.
Is your doctor an African American?
No, he's Asian. I think because he is a person of color he understands. So it's not hard for me to talk to him.
Does your doctor treat you like a partner in terms of making decisions about your health?
He does. He always asks me what I think. He'll always push back to me that the decision is up to me.
Do you have a particular health regimen that helps you stay well?
I try not to stress out. I haven't been exercising lately, but I do exercise, and I watch what I eat.
How have your relationships with family and friends changed since you were diagnosed?
My relationship with my family has not changed at all since I was diagnosed. I'm very open with my status. But one thing I do notice about my family is that we don't talk about it. The only person who talks about it is my father. Everybody else just sees me as Precious, and I'm not sick or anything, so ... But I have to be honest. A lot of my family doesn't know. Only my immediate family, my father, mother, brothers and sisters know. Except for one cousin, my other relatives don't know. It's not important. It's not that you have to tell everybody. But if they happened to see my poster and ask, I would let them know. The poster was a campaign they did out here in Los Angeles called "HIV Stops With Me." At first I was really scared -- because people would say, "She's got it." But then after a while I thought about the real purpose and the reason why I did it -- to get the message out. It's not about me.
How do you decide whether to disclose your HIV status to someone?
Maybe a conversation will come up and we'll talk about HIV and I'll disclose my status. I don't have a problem with that. It allows for education, because people have their opinions of what HIV-positive people look like, and then I burst their bubble and it's like, "Oh, you don't look sick."
What is the best response you have ever gotten from telling someone? And what is the worst response?
I've always gotten more positive than negative. Recently I spoke at a women's empowerment breakfast, and this young woman came up and told me how touched she was by my story and how that really helped her look at herself and the choices that she makes.
The worst was when I was working at Edison Security. I was leaving to come to Women Alive, and one of my coworkers asked where I was going for my new job. I told her and she immediately had this reaction like "Oh, oh my God!"
How has your sex life changed since you become positive?
We use protection because I don't want to be infected with my husband's strain of HIV. Even though I'm not on medication, it's about protecting myself.
Did you make any New Year's resolutions?
My New Year's resolution is to get better at managing my money. You know, saving money, spending it wisely. I spend it on food! I eat out a lot. I'm used to being by myself, and now that I'm married, I feel I need to go home and cook.
What's the greatest adventure you've ever had?
I always wanted to go to Atlanta. My family is from down south, but I was raised out here in L.A. I feel more comfortable down south because that's where my roots are. So I went with my mom about four years ago. My mom at that time had about 16 years of sobriety. That was the highlight, because I was able to share in that recovery.
You know, I take that back. The biggest highlight of my life was reuniting with my mother. She had left me at my grandmother's at the age of five because she was deep in her drug addiction. So, at the age of 43, 44, she finally got her life together, and that's when we reunited.
If you were granted one wish, what would it be?
To be a multimillionaire!
|PRECIOUS'S POST-DIAGNOSIS MEDICAL HISTORY|
|CD4+ Count (May 2008): 533 Viral Load (May 2008): Undetectable|
|Medications, Side Effects and Illnesses (chronologically)|
|1998: Year of diagnosis -- started HIV meds|
|2001-2006: Went off meds due to high CD4 count and low viral load|
|December 2006: Got back on meds -- Truvada (tenofovir/FTC) + Videx-EC (didanosine, ddI) + Reyataz (atazanavir) + Norvir (ritonavir)|
|October 2007: Regimen caused kidney enzymes to elevate -- got back off meds|
|March 2008: Got on current regimen -- Reyataz + Norvir + Isentress (MK-0518, raltegravir) -- which is working fine so far
Updated May 2008
Precious Jackson can be reached via e-mail at firstname.lastname@example.org
Talk to women about HIV at The Body's Community Center.