April 3, 2007
I'm here today with Teniecka Hannah, who recently returned from a tour of the United States with Operation Get Tested. She spoke at colleges and high schools about being HIV positive and the importance of getting tested.
Teniecka, let's start at the beginning. How did you find out you were HIV positive?
I found out I was HIV positive when I went to go visit my family in another state. I had what I thought was a sore throat. I went to the doctors and they said I had esophageal thrush. I was wondering what that was and the doctor told me it was a yeast infection of the throat. After running the test they told me that I was HIV positive.
What state were you in? You were visiting your family?
Yes. I was visiting my parents, and they were in Missouri.
This was on a military base? Is that right?
Yes, it was on a military base.
Once you tested positive, what did you do?
When they gave me the news as to my results being HIV positive I really didn't do too much. Actually, when the man told me I was positive I just said, "OK."
Do you know how you were infected?
Yes. I was infected by my boyfriend of two years in a long-term, monogamous relationship -- [a relationship] that I thought was monogamous. Actually, I found out he was married, with children.
How old were you when you started seeing your boyfriend? How did you start dating?
I was nineteen when I met him. He claimed that he was 27, but it turned out that he was really 41. I met him while working at a retail clothing store. He was a new employee. One day we started talking in the break room. He told me he was single and asked if I would be interested in dating. I said yes. The relationship started out with us going to the movies, the mall and to dinner. That's how we started getting involved with each other. Anyway, no protection was ever used.
How did you find out he was married?
I found out he was married when I went to visit him and I heard a woman's voice in the background. I had gone to my boyfriend's place unexpectedly for the simple fact that I thought it would be a nice surprise. When I rang the doorbell and he answered, I heard a female voice ask him who it was. He replied, "A girl scout." I asked him who that was. He just ignored my question and told me I had to leave. I found out later that she was his wife because she found a way to contact me. His wife found out I was with him because I had given him some Christmas gifts with my name on them.
Did he ever acknowledge having HIV?
No. He never did acknowledge having HIV and I never found out if the wife was positive either.
What did you say to him when you found out you had HIV?
Well, I had one encounter with him, a telephone call. I told him, "I'm HIV positive -- I just got my result recently and I'm HIV positive."
What he said was, "Are you on medicine? What are the doctors doing?" He began to argue with me and really put blame on me, like I gave it to him, that it was my fault that I was HIV positive.
What did you say?
Well, we were on our last legs. The relationship was going down anyway, so after that last conversation with him, I had no other contact with him in any way, shape or form.
How did you process your diagnosis? At first you just said, "OK.", and that was it. What happened after that?
Well, I didn't tell anyone, actually. The military people told my mother and my mother then told everybody in my family. It took a few months for me to actually process what this HIV status meant, because I didn't really understand. I had never known anything about it. I wasn't even taught in school about this disease, so it was really new to me. I really didn't want to deal with any of it.
So I was really going through a lot of mixed emotions. I was angry at myself for being so foolish. I was very sad and disappointed. I didn't know where I was going to go from there. I thought it was an automatic death sentence, and there was nothing for me to do.
How did you get beyond that point?
After my family came around -- it took them a long time to come around -- but they finally started coming around and being supportive. And I had my faith with me the whole time. My dependence on God was a lot of how I got through. Without my faith I wouldn't have [had] anything to turn to, no one to turn to, because my family wasn't supportive of me at first. The only thing I had was my Lord. I held onto that so tight because that's all I had.
Are you a Christian?
Yes, I am.
What was your family's initial reaction?
My mom was not happy. She was not happy. She was very angry. I remember her stating specifically to me, "Look at your body. Look at what you did with it. I gave it to you. After 18 years look what you've done." I didn't really know what to take away from that statement because it's not like I went out there and intentionally did this to myself. I didn't purposely go out there and set myself up to have this happen to me.
At this point, you've obviously made use of other resources that are out there, and you're on this national tour. How did that come about? How did you go from being diagnosed to a point where you were able to speak out and be this visible, public person?
Well, [laughing] it did take a long time. I really had a hard time wrapping my mind around and really grasping what this HIV status meant. When I was going to a doctor where I'm living now, [in] Colorado Springs … [he] referred me to the organization I'm dealing with now.: The Southern Colorado AIDS Project. The [AIDS Project] were mostly my support. My family wasn't really supporting me. They referred me to places where I could get dental health, because I didn't have a dentist. They were referring me to places where I could get my medicines, because I didn't have any insurance at the time. They were helping me to get insurance. I needed labs drawn. I didn't know that. They were helping me use Ryan White [the Ryan White CARE Act] to get my labs drawn. They were really helping me do a whole bunch of things I didn't even know I was going to need, until they [told] me: "You have to get this and this done, so you have to go here and here." They were so great at helping me with that.
After everything you've learned, what advice would you give to someone who just found out they were HIV positive?
I would tell them that, yes, there is life after being HIV positive. Yes, you will feel very terrible and bad once you have had that diagnosis, but [you've got to] continue to have a positive, optimistic attitude towards the rest of life, because life doesn't stop after your diagnosis, life keeps going on. As life goes on you have to keep that attitude of optimism and not just look at the bad things [related to] HIV. While it does have its side effects and bad things that go along with it, there are positive things about being HIV positive.
What are they?
For me, personally, it's being able to share my story amongst youth and my peers. I'd like them to know what I had to go through. [I share] my experience and my story. I wouldn't want a single person to have to walk in my shoes, not even for a single day. [I wouldn't want anyone] to know what it is to be HIV positive. So the positive thing I take away is getting to share my story, getting to be out there to help people understand and know about it. Still, people do not understand, and there [are] still stigmas and stereotypes out there associated with being HIV positive.
What do you think is the best thing that you have learned since testing positive?
Well, the best thing is that I've grown. I've grown a lot through this challenge. My parents could probably testify to that. It's given me a lot of character and definition to myself. This is a challenging thing. It's not any easy thing -- pop -- and then you're done. It's not an easy road. When you have to disclose it makes it even harder. [You know that] they are going to view you and look at you and perceive you [differently]. I just thank God everyday that I have a second chance to go out there and speak and share!
You've talked about changing since your diagnosis and having more character. If someone had met you several years ago, when you were HIV negative, and then met you again now, what do you think they would notice?
When I was without HIV, I was a very selfish person and I didn't care about anybody but myself. Now, I look at it in a whole different way because life is so precious and it's so valuable. I was just frittering my life away. I just cared about me, [I was] really selfish. I'd say my selfishness has gone away. I've been more open and more compassionate.
Let's talk switch gears for a minute and talk about racial identity and HIV. Do you think it's different for African Americans living with HIV?
I think it is a little bit different for African Americans having HIV. The African Americans I know, that I personally grew up with and surround me, [I think] their views are skewed. I don't know how they got skewed, but they are. It's like trying to tell someone that something's good for them and they don't want to hear it. The black community sometimes has a way of not wanting to listen and hear what HIV is about.
What do you think causes that? Could you be a little bit more specific?
I think it's mostly about education. If they're not educated about HIV in their communities or their schools or whoever they associate around, friends and whatnot, then they don't know. If they're not educated … then they're going to be ignorant about how HIV can be contracted, what you can do to be protected and things like that.
Do you come across denial or myths about HIV?
I haven't come across those personally myself, so I would have to say, no, I haven't come across any myths. I hear about them, and I'm really stunned and I listen. I've never come across anyone talking to me about their myths. So, no.
What do you think are the big misconceptions about HIV in the black community?
I think one [misconception] is that they really think it's a gay white man's disease and that if you're African American and you get HIV there has to be some weird thing that you did to even have HIV. I think they really think it's a gay white man's disease, and it's not going to come into their neighborhood.
What's it like to be an HIV-positive person in the black community? What is it like interacting with other black folks? How do they treat you? How do they deal with your status?
Well, I would have to say that I live in an area where black people are, but they are very scattered. Even if you try to tell a certain person, they'll look at you funny, like you're an alien from outer space, and you can't really talk to them. It's sad. It's really sad, that I can't even talk to my own race, because [when] they look at me, they already discriminate against me because of my HIV status.
What do you think the barrier is? How do you think educators can get the information out there and end some of that stigma?
I think educators just need to have more programs like Operation Get Tested ... just getting into the high schools and getting into the universities is a big, big thing. That will make a big difference because if they know … [about HIV] at [a] younger age and they take that over to their college life and their university they'll be more aware. As I was saying, nobody taught me about HIV. Nobody taught me about these STDs [sexually transmitted diseases]. I was not privileged enough, or privy, to any of that information. When I was taught sex-education that is basically what it was, sex education, none of it useful for anything that would come along having to do with sex.
I think the biggest challenge is knowledge about HIV -- the knowledge and people not disclosing [their HIV status]. It's like when they see something, they don't want to talk about it. When they hear about it, they don't want to talk about it. We need to be more open, and more trusting … because it's a problem in our community and African Americans are the race with the most HIV infections.
What do you think causes that denial and that unwillingness to be open and talk about HIV and prevention?
[Sighs.] I have to say, I really don't understand why that would be. It's just the knowledge and the education. It needs to be out there. It needs to [be taught] more. It's not [enough to] just give them a pamphlet so they can read it, because some people aren't going to read a pamphlet. They'll put it down. There needs to be someone like them, from their own race, that can tell them, "Hey, this happened to me. And …, as it happened to me, it could happen to you. You need to be careful."
Since you have been diagnosed, what's your health been like? Are you on meds?
Yes, I am on medications. My health has been up and down, depending on which meds they've put me on, but for the most part I've been very healthy. All I'm worried about is trying to lose a little bit of weight, and then everything will be fine for me.
What meds are you on now?
How has that been working for you?
Very well. I haven't been having any problems with them. Ever since they changed Kaletra from a gel capsule to a tablet, it's even better not having to worry about refrigerating my meds. That's also a plus.
You said you had some problems with your meds and your health had been up and down. What happened?
There was one medication in particular that I remember made me so sick. It was called Viramune [nevirapine]. It broke my face out into something so horribly disgusting. I didn't even want to go out into the street because my face was broken out. My skin was peeling off my face. I don't even know how to describe it. It was so nasty looking, and I was so sick I had to lie in bed. I was vomiting all the time. I was staying with my grandmother at the time, and she and my little sister had to come up and help me keep things down. Every time I drank some Ensure [a complete protein drink] or noodles or anything to help me have some sustenance it would always come back up.
Since then you've switched medications and you feel better?
What's your CD4 count and your viral load?
How far is that from when you were first diagnosed? Do you remember?
My counts differed, but I remember the one that stuck out the most was when I went in and they told me that my CD4 count was 30 and my viral load was 750,0000. They gave me an AIDS diagnosis because my CD4 count was so low -- to the point that they didn't understand -- and my viral load was so extremely high.
That was when you were first diagnosed?
That was a couple of months after. The first time my CD4 count was 52. Then, something drastic happened. They got me on meds and it wasn't working; I dropped all the way down to 30.
Were you hospitalized at that point?
No, I was never hospitalized for anything related to HIV at all.
Now, how was your health care at that point? How did you choose your current doctor?
Well, my current doctor was chosen through a family practitioner. I was going to him at the time, and he referred me to the doctor I'm seeing now …. He's very good at what he does.
Is this the same person you've been seeing since you were first diagnosed?
Yes, it is.
Oh, that's great. Is your doctor African American as well?
No, he's not. He's actually Caucasian.
Do you feel like you have a good working relationship?
I have heard other people have different kinds of relationships with their doctors, but my [relationship with my] doctor is strictly a doctor-patient relationship. He smiles sometimes and we joke, but he really is about business. He knows my counts, makes sure I'm healthy and doing thing[s] to stay healthy. Our relationship is really a patient-doctor relationship.
Do you feel like he treats you as an equal partner in your health care?
He does -- he's always taking my input. Before, when I was taking other medications, he told me, "I want to cut back on this medicine, but not if you don't think that's OK. If you want to cut back you let me know. I don't know how this is going to work because this one might be resistant."
I said, "Well, I'm with you, because you know what's best. I'm not a doctor, so you tell me." So, he takes my input even though I don't understand all the medication options and what they can do for me. He takes my input anyway.
So, you feel like you have a trusting kind of relationship.
Yes, I do.
What do you do to keep healthy? Do you have a health regimen or anything else to keep healthy besides your meds?
Well, my mom is always waking me up at five in the morning to go to the gym. I really hate that, but I'm happy about it because it does keep me active. I take vitamins as well -- I take Centrum. I'm always trying to eat healthy, even though I slip up sometimes. I try to make healthy meals -- salads, or at least snack on celery or carrots during the day.
You spoke earlier about disclosing to your mom, and then having her tell your family. I'm wondering, now, how do you decide when to disclose to somebody?
Now that I'm on this tour it seems a lot easier to disclose. Before, the way I would do it is I would take some time and get to know that person, not for a whole two months or one month, but I'd give them a week or two. If everything's going well, I'd say, "Hey, look, I'm HIV positive." That two-week period gives them enough time to get to know me a little bit and for them to think about, "Well, she just told me she's HIV positive. Do I want to be with her or not?" I think I've taken that time to give them a chance to get to know me a little bit but also for them to take this and know this about me for themselves.
What kind of reactions have you got from disclosing to people? What was the best reaction you ever got?
The best reaction I got was from someone who, after I told them my whole entire story about how I did get HIV, the guy … was actually pissed off. He said, "That guy, he shouldn't have done that to you. I'm just mad because you seem like such a nice individual. Why would someone do that to you?" So that's the best reaction I've ever gotten.
The worst reaction I ever got after telling someone I had HIV was from someone who said, "All you HIV people, you need to be put on an island and blown up!"
Wow! How did you respond to that?
I couldn't respond because after they said that they just hung up on me.
How has your love life changed since you became positive?
Well, for me it hasn't changed too much. I'm usually in long-term relationships. The last relationship I just got out of was four years. I had disclosed to him early on in the relationship, and he was fine with it. I haven't had much dating because I'm usually in long-term relationships. I'll be out there again in the dating scene, and I'm just going to be honest and open.
Do you have any tips for people with HIV who are dating?
I would just say be yourself. Always be open and honest. Don't try to be fake, use a façade or put up a front. Be yourself, and if they can't accept you they're not the one for you.
Excellent. Is there anything else you'd like to share with our readers?
Just stay positive. Be aware. Be prepared. Get tested, and know your status.
Thank you so much, Teniecka.
Teniecka can be reached via email at firstname.lastname@example.org.
Want to find out what Teniecka's been up to? Check out Teniecka's March 2011 update interview.