This Positive Life: Tonya on Motherhood, Love, Loss and Laughter as Medicine
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?
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