October 9, 2013
Do you think you see a lot of HIV awareness messaging everywhere you go? After Tonya tested HIV positive in 2002, she felt that she couldn't escape the ads, billboards and other reminders about HIV -- though she rarely remembers seeing them before her diagnosis.
Though Tonya was never mad at the father of her children for having unprotected sex outside their relationship, which led to him and then her becoming HIV positive, she does regret that their kids have lost their father. But with lots of laughter, a healthy relationship and her three teenage children, she's able to fight past "pill fatigue," find many ways to live well, and tackle the "mental challenge" of HIV head on.
This interview was conducted in December 2011.
Could you start by describing how you found out you were HIV positive?
Well, I found out in 2002 that I was positive. At the time, I was in a relationship with my kids' father. And he was sick. He had a stroke. He was in the hospital. They wanted to test him, because he was so young. They were trying to figure out why he was sick. So they were doing all these tests, and they decided that they wanted to run an HIV test.
I didn't know. But I guess that's kind of how they do it in the hospital. They want to test for everything so they can rule things out. And so, when they did the HIV test, his came back and he had full-blown AIDS. That is what prompted me to go and get tested myself.
How old were you then?
What did you think, and how did you feel, when you heard the news that you were positive?
Since it was a two-week wait when I got tested, I had a lot of time to think about it. But he was sick, and he was in the hospital. So it was more about him, because he was the one that was sick, and I felt fine. I wouldn't have gotten tested if he hadn't tested positive, because I felt "healthy." It didn't really sink in until later, because, like I said, it was more about Eric and him being really ill.
How did he do?
He didn't do well. At first, he did so-so. But it had gone on too long, and he had other health issues. He passed away in 2004. So, he lived for about two-and-a-half years after his diagnosis.
What was the first thing you did that helped you come to terms with your diagnosis?
I didn't tell anybody at first. But then I felt like I needed to talk to somebody. So I told my best friend. Our kids played together, and we were friends since high school, so I felt like that was something.
But I think that made it a reality, because I had to say it. And it was about myself; it wasn't a commercial. It wasn't somebody else. It was actually me.
How long after your diagnosis did you tell your best friend?
I waited a few months.
That's a long time to carry that around.
It is. It is. But Eric was really sick, so it was time consuming. So I didn't have to really deal with it.
When you look back prior to your diagnosis, did you realize that you were at risk for HIV at the time?
Yes and no. I knew it existed, and I knew that I was doing things that could promote me becoming positive. But no, because I was in a relationship with someone that I thought was exclusively with me. ... If I can be frank: Even though I knew that he had extra, outside relationships, I really thought that he would have protected himself and, therefore, would have protected me. And so, when we were intimate, then I didn't have any worries.
It sounds crazy when I say it now. But at the time, it felt like that was the right thing to do. And him and I had had the discussion about having HIV. So I felt like I put it on the table. He knew that I was aware of what he was doing. So then I thought that would make him be more proactive about protecting himself, which was silly.
So you believe you know, you have enough evidence to know, from whom you got your HIV?
Were you ever able to talk to him about your feelings about having contracted HIV from him?
A little. I wasn't angry because, like I said, I knew the role that we both played in our relationship. And I knew that it wasn't something that he would have done intentionally. I don't think it would have been something that he would have done intentionally, but I don't know. I wasn't really upset. I get more upset now -- now that my children are older and they need a father. I think those things kind of make me more upset now, more than then.
When you had that first conversation with your best friend, and told her about your diagnosis, how did you start the conversation?
Oh, gosh. I don't really remember. I think it was something like, "Well, you know that Eric's sick." And then it was me telling her about him. So I was like, "Well, he's positive; and then I went and got tested."
Did everybody know during his illness what his condition was?
A few people in the family; not everybody. And that was because we wanted it that way, just because I didn't think it really mattered. I didn't think that it mattered, because I felt like he was sick; and that's all that mattered. It didn't matter what he was sick with. I just felt like now let's deal with what we need to deal with.
And I don't know if it came out that way. Because Eric came from a religious family and there was a lot of denial in the family about other situations. So, it was just one of those things that you don't really talk about, but you kind of know.
How soon after telling your best friend did you start telling other people?
I didn't tell anybody, really. In fact, I didn't tell anybody. I had Eric because he was positive, obviously, and he was my partner. So he knew. He was the main person that I talked to. My doctor: I got a really great infectious disease doctor, and she was really excited about helping me, and getting me into treatment, and just giving me a good sense of knowing that I was going to be alive. You know, that I was going to make it. So she was really good. And her nurse: She was awesome. That was my support system.
I didn't tell my children. I didn't tell my mother. I didn't tell anybody. So, just my friend.
You had to make choices all the time, as to whom you would, or would not, disclose your status to. How did you make those decisions?
I knew I didn't want to tell my mother, because I felt like I didn't want to disappoint her. Because she didn't like Eric in the first place. I would just pick and choose, because I felt like it was something that was personal. And I really felt like, if it was anything else -- if it was chlamydia, if it was gonorrhea -- I wouldn't be racing out to tell that, either.
Mm-hmm. So it was your comfort level, is what you're saying.
Yeah. I just had to feel it out first. And I really didn't get that clinical until I started working here at BABES.
How have your relationships with family and friends changed since you were diagnosed?
Everybody still treats me the same; so, really great. I have good friends. I haven't had any negative anything. I think I have more love and affection.
That's a great response. What is the best response you have gotten from telling people you're positive? Do you know? Can you think of one?
Probably my daughter. She's my middle child. And she is really observant and really smart. I didn't tell my children for a long time because I didn't tell my mother. I didn't want to tell them something, and have them keep a secret, and have it just go on like that. So I said I wouldn't tell anybody. But then, when I did decide to tell them, I told each of my children individually.
I guess, the way I set it up, she was waiting for something exciting, like some gossip or something. And so, when I told her that I was positive, she was disappointed that that was it; that was all that I had to tell her. So that was kind of a relief. Because I was really worried about telling my children.
Do you remember the worst response, the most negative response?
I don't really have one. And I'm lucky, because that's not everybody's story; but I don't have a negative. I don't have a large scale of friends, and my family is just a few here. So I'm lucky.
Are you in a relationship now?
How has HIV affected your relationship, and your sex life?
Oh, well, I think it is good. When I first started dating my partner -- well, before we started dating, I told her that I was positive. She thought that I was lying to get out of going out with her. But then she realized, well, who would lie about that? And so, she was like, "Oh, OK."
I was nervous. Because I was in a relationship prior to that, and I didn't tell the person; for too long, I didn't tell that person.
Just so we're clear, you had a relationship with a man, Eric, who was HIV positive, and from whom you contracted your HIV.
Right. My children's father.
Who later died.
Yes, he passed away. And, we'd separated.
Oh, you did separate?
We did separate, because his family felt like they could take better care of him where he was from. He was from San Francisco.
But it wasn't a separation of the marriage, then?
So the marriage was having a separation?
Right. Prior to the diagnosis, it was already heading down that direction.
All right. So then, at some point, you began a relationship with a woman.
So I heard the pronoun change and I just wanted to clarify and make sure we're on the same page now.
OK. When did you tell your parents and family? You actually described telling your daughter. Do you remember telling your parents?
My father's no longer here. He passed away right before my kids' father. And my mother: when I finally told her, it was a rushed kind of deal. Because I was doing an article for the Seattle Times, and I didn't want her to read it in the Seattle Times first. It was on the cover, so it really would have been something that was out there -- with a picture -- so I wouldn't have gotten out of that.
So I just told her, because I felt like, you know what? It's time. And it's OK. Because it's my thing. And she was like, "I don't know why. You could have come to me. I'm your mother." Not what I expected, but it worked out.
Tell me some about your background, and your family. What kind of neighborhood did you grow up in?
I grew up with my mother. She was a single parent for most of my life with my younger sister. We're eight years apart. She was a cosmetologist for the majority of my life. She's a longshoreman now. She was good. You know, working hard. Taking care of her daughters. She tried to put us in areas that were not really urban, more ... I don't know how you'd ... what's not urban?
Suburban, yes. And I grew up around a lot of different people -- Asians, Hispanics. It was great. I felt my mom really tried to keep me away from the urban areas. She really tried to give me a sense of direction the other way. Because she wanted me to go to school. She wanted me to be successful.
Were you growing up modestly, and her concern was about keeping you away from, what, drugs and crime?
Right. She felt like it was better. I don't really want to say better, because it's not really better. But I just think she was trying to give us a fair chance.
The best jobs.
Right. And she kept saying that the schools were better. And that was proven to be true. It's different. And so it worked out. And I had a rainbow of friends. So it worked for me.
Do you believe that it's easier or harder for someone to be HIV positive in the community you come from, versus all the other communities in which they may have been?
I think it's easier; where I grew up, it would be easier. Because it's talked about in the schools. It's promoted: safe sex; healthy living; having a good, healthy lifestyle. They try to demonstrate that.
You know, I do a lot of speaking engagements at a lot of different schools. And I think it just depends on the home training, really, versus the community. Because it comes from the home and then people bring it out to the community. So, it varies.
I was really lucky growing up. We weren't rich. We weren't poor. But we just ... we made it.
Let's talk about your HIV treatment and care -- and your health care. What has your health been like since your diagnosis?
Great. I've been pretty healthy. My first regimen of medication: I'm on the same regimen. I've been on the same regimen now that I've been positive for almost 10 years. I've only changed one medication.
How did you find your HIV specialist?
My primary care physician didn't really know anything about HIV. She was a registered nurse-practitioner. She was somebody that saw my children, and myself, for years. So this was like a blow to her, as well, when the test came back.
She had heard about an infectious disease doctor and gave me a referral. That's how it worked out. And it turns out that I had a great infectious disease doctor who had been in the field since the '80s. I just loved her passion. To be in 2002, and to still have that passion; you know, it's rare. She was really great. So it was through my primary care physician that I found her.
So you started HIV medications rather early?
Yes, I did.
And what is your regimen?
How do you access your HIV medications? Do you have private insurance, or Medicaid, or ADAP, or what?
I have Medicaid. And I go to Madison Clinic, which is located at Harborview. That's generally where a lot of the clients go around here in King County if they're local -- Seattle, Renton, Kent -- they usually come downtown here to Madison Clinic, because that's what they focus on, is HIV and AIDS care. So you can get your medications there, as well.
So, it's Medicare, but you do have copays that you will probably pay? Some sort of cost associated with that?
Not right now.
When you pick up your medications, you don't have even a $5 copay?
Do you know your CD4 count and your viral load?
That's really high.
That's almost showing off.
Yeah. I'm actually really happy about it. I was surprised. Because I haven't always been dedicated. Because I've been pill fatigued. You know? And sometimes I just ... I'm done with it. I'm just over it. But I have things that motivate me. So I just keep going.
What are those?
My children. They're awesome: 16, 14 and 12. They're like little adults, and comedians. They inspire me to do well. And a good, healthy relationship. I'm constantly laughing. I have good friends. I have a good job. I love what I do.
What else do you do to keep healthy? And you're touching upon it, I believe, in terms of social support, and laughter, and having a good state of mind. But what else? Do you try to do exercise, or stick to any sort of special diet?
Well, I do work in downtown Seattle. I take the bus, so it takes like 45 minutes to get here. And I make sure I get a good brisk walk to my office every day. I just stay busy. I go out dancing. I don't really say I exercise, per se. I'm not really a big exercise person. I've signed up for many gym memberships, and never have any follow-through.
But I really believe in healthy relationships. And do I eat healthy? Sometimes. Sometimes not. You know, it depends. I just stay busy.
What kind of work do you do?
I'm a peer advocate for BABES Network-YWCA. I help women get into housing, or give them referrals to get into housing, or medical care; case management.
And what is the mission of the BABES organization?
Well, I really can't spit out the mission. We have our goals. We just try to help women. We want to meet women where they're at. We want them to be able to advocate for themselves. We want to have them be able to navigate their way through the system and not feel so frustrated.
Because there used to be a time when the person would come in and then the case worker would fill out the paperwork for them. Those times ... you know, the funding is slim to none now. So we try to get them motivated. We try to promote a healthier lifestyle for them. We try to let them know that they have this disease, but that it's not the end of the world for them. We try to help them find their inner voice, to be more powerful.
What were you doing before you were diagnosed with HIV? Was it similar to the work you're doing now?
Oh, I was a mother. And that is all kinds of jobs. But I was a student. I did go to Renton Technical College and took the emergency dispatching class. I thought that's what I wanted to do. In fact, I came into BABES to talk about my interview process with one of the peer counselors at the time. And so that's how I gleaned into BABES. Because I was just here one day.
How did you become involved in HIV activism?
Working, starting with BABES, just being part of the staff and learning about policy, going up to Olympia and talking to my representatives. I've been to Washington, D.C., and I've met with representatives there. I have met with a lot of people from all over the United States.
So, when people get together and we're on the same common page, or path, oh, it's some powerful stuff. I love it. I think that's the best part of my job: doing outreach, and speaking, and advocating, and fighting the good fight. I don't know if I would, like, sleep on a street corner for a billion days, or something, but I definitely feel like I'm a good fighter for the cause.
Don't you ever get sick of talking and thinking about HIV?
Sometimes. I wouldn't be human if I didn't. Sometimes I get tired of it. Sometimes. But then, it's a part of me. It's not who I am, but it's a part of who I am.
And it's definitely not over. Women are always getting stuck on the back burner. And I'm frustrated with that. That can be frustrating. And politics, in general, is frustrating. But if we don't do it, who's going to do it? So I feel like I'm just going to keep doing it. When I can't do it, I hope that something that I say will inspire somebody else to do it.
When you talk to people, at least from your viewpoint, what are the biggest issues going on right now in HIV? What comes to mind?
I think insurance; medical insurance is like the biggest thing. I have a friend that lived here and had all kinds of access to medical care, case management, mental health, everything. She pretty much needed housing and child care. Then she decided she was going to move to Florida. And there is nothing. There's a waiting list. And so that was really hard.
So I think the medications, the insurance part, is the part that's really hard for people right now. And I think housing is so important. Because when you have other things that are important to you, like housing or food, medical care gets put on the bottom of the totem pole.
Could you compare how you feel about having HIV now to your feelings when you first learned you were HIV positive? Could you have imagined that you would be this eloquent, confident woman?
No. When I first was diagnosed, I felt like I was in a cloud -- I literally felt like I didn't know which direction was up, or down, or left, or right. I couldn't think. I remember, before I was positive, I would see "Wrap It Up" commercials, or HIV and AIDS awareness -- you know, the red ribbon -- people would go to the Academy Awards, and they'd have a red ribbon. I never really paid attention to that. But then, after I was diagnosed, I felt like it was everywhere. Everywhere I looked, it was like an HIV and AIDS thing. I felt like, oh, my God, it's crazy.
Were you aware during that period that black women were at an extremely high risk -- more so than other populations?
That message never reached you?
Or it never sunk in? You don't remember being educated on that message?
No, I don't. I do not remember. I remember, like I said, the commercials being on BET. But just because it's on BET doesn't mean it's a black woman's issue. You know what I'm saying? I mean, I appreciate the work of even just putting that out there. But definitely not.
I don't really see it now. I think I only see it now because I'm in the trenches. I work in the field. So that's why I see it. It's not like it's Oakland or San Francisco, where you drive down the street and there's a billboard, every other billboard. You might skip a couple and then there's like an HIV awareness ad on there. I don't see that. I think it should be saturated like that, so people can start seeing it. I think it should be put on people's minds.
How do you think having HIV has changed you?
I think it has made me appreciate life more. I know it has. I value relationships more. I never really experienced losing someone, and the pain. I never experienced a loss like that of my kids' father. Even though we weren't together, just having that experience of losing someone. Even today -- and it's been a while since he's been gone -- I still feel heartbroken about it.
What advice would you give someone who just found out they were HIV positive?
That they don't have to do everything today. Everything won't be done today. You'll have tomorrow. Of course, I want to encourage people to take their medications and do all that stuff, but I think they hear that enough from their doctors. I want to talk about other things that are more real to them -- the emotional ups and downs, you know? It can be a mental challenge.
This transcript has been edited for clarity.