February 11, 2014
It's not easy being a woman living with HIV, especially if you happen to be looking for love. But, if there's one thing that Marcia, Patricia, Cecilia, Nicole, Sharon and Andrea want to share with TheBody.com's readers, it's that the question shouldn't be whether someone loves you, but whether you love you. Each of these women has had her own struggles with dating, marriage and HIV, but each has come to the conclusion that a relationship with someone else doesn't mean anything unless the most important relationship -- the one with yourself -- is flourishing.
Excerpted from interviews for TheBody.com's This Positive Life series, these short clips are samples of the larger stories each of these interviewees has to tell. Aside from love and relationships, they discuss their diagnosis, first disclosure and the state of their health since receiving the news that they are HIV positive.
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Because every time [Acadiana Cares] need someone to go out and advocate for people living with HIV and AIDS, I go. I go, because I can never give back to them what they gave me. They gave me back my life. They gave me back my dignity. They helped me feel like a woman again. They let me know that they cared, and that I mattered. They taught me not to be afraid. They taught me to take care of me, to love me, to look out for me. And they helped me learn to live.
Also, because having HIV and AIDS doesn't define who I am. It doesn't make me me. It's not my soul. It's not my heart. It's not the love that I care for people. It's just a disease that I didn't stand in line for -- it wasn't my turn -- that I got from a man that I loved with all my heart, who simply didn't know how to love me back. It happens. And God makes us soldiers in the fight.
Not all of us are brave enough to stand up. Not all of us are strong enough to speak out. Many of us hide in shame, as black American women, because we fear ridicule, and shame, and dishonor, and everything that the world thinks we should -- when it's not our fault. It's nobody's fault. It happens. So? It happens.
I have friends. I am dating. I am in a relationship, which is great. Because you feel good when you feel loved. I remember the days when I didn't think that that would ever happen again for me. I love going to the movies; having dinner with friends; socializing with friends. I enjoy that, and spending time with my children -- especially my grandbaby. It really brings joy to my life.
I do try to exercise. I attempt to do the treadmill every day for a half an hour. I do that fine maybe for month. Then something will happen and I'll stop and have to struggle back to get on it. So, like everybody else, I'm sometimes exercising and sometimes not.
I eat fairly healthy. I'm not overboard, like, you know, being so conscious of what I eat. But I think I eat fairly healthy, and I'm doing well.
How long have you been in the relationship that you're in?
About 12 years. It's a long-term relationship. I like to tell folks that sometimes we put this stigma on ourselves, because we believe no one will want us, will want to be with us, and that they may judge us. Do we tell? Do we not tell?
And, you know, there are going to be people who are going to be afraid. There are going to be people who will walk away. But there are also people who will love you regardless of HIV. We have to take the chance.
I have dated and then I would run. If I feel like this is a time I need to tell somebody, I will cut it off. But I've taken chances and I have disclosed. And it's been OK. So I think we need to be brave, we deserve to be loved and we deserve all of the things like everybody else.
That little voice inside of us will tell us that we're not good enough, but we have to believe. We have to build our self-esteem and feel good about ourselves. Because we are loving and deserving to be in a healthy relationship, just like anyone else, be they HIV infected or not.
In general, I'm very open about being HIV positive. People can actually just Google my name and find out everything about me -- like how many siblings I have, where I'm from, what I do. So it's really hard to hide who I am. And I warn people about it, that I'm very high profile. So, if you date me, be forewarned.
I think that that's one good thing about living a very open life, right? So that's how I'm dealing with it, in general. If someone doesn't know about my status, it's a two-way street. I try to really look at how comfortable I am with the person before I decide to go there. Yeah. If it's just the first date, I'm not going to go into all the details. There's really no reason. But I'll drop enough hints about who I am. And if they want to go Google me, they can go ahead and go Google me and find out.
So, now, since this is a question that comes up a lot among people who read our site and watch the videos, do you have any advice for people who are encountering the dating world as HIV-positive folks, as trans folks? Do you have any sort of tips or anything that has been helpful to you, or things that you've learned along the way?
I think that for people living with HIV, it's really about their own comfort level with disclosure. It's also about safety ... if they feel safe enough to disclose or not. I don't believe in compulsive disclosure. That is certainly not a vow, you know, that you have to disclose everything on your first date.
But also, in the Internet era, the other option is that you can always do email exchange until you feel like you've got all the things that you need to discuss out before you meet. You don't have to feel like you have to handle rejection in person. So that's the two options.
I think that that's the same for transgender people. It's especially true. It certainly helps to find someone who is accepting before you meet. Otherwise, for transgender people, it's easy to put ourselves into very dangerous situations. If someone didn't know, and finds out in person, it's a more risky situation, at times.
The first time I had to disclose was really scary. There was this guy that really liked me, and I had just found out. Didn't really want to tell him the big news. It went really well, I was really lucky. I told him. His wife cheated on him, so he went to his doctor and got tested for everything. Talked to his doctor about me and what precautions he needed to take to keep both of us safe. He just told me that it didn't make him think any different of me, and he still wanted to pursue this relationship. He was the first guy that I told.
I really have had good experiences with dating. I had a guy that I really like when I first moved here to Washington. I met him on a dating site, and he thought, "Wow, that's really cool that you're so upfront about it, but I really need to think about this one." And I understand. It is a big deal. I didn't talk to him for a few weeks, and then he called me up and invited me over to watch a movie with him and his kids, and I had a big pimple on my face, so I didn't want to go. But I thought, "Hey, that was nice, he thought I was cool enough to give it a shot." But, I never went out on a date with him again.
But, now that I'm single again, I'll tell you that it is a barrier. It's not like a broken toe. It is a big deal. I'm pretty confident with myself, and I'm pretty educated around HIV, so I feel that I can educate someone. And if they're not going to accept me for who I am, then I probably don't want to be with them anyway. So, I'm not in a rush to get into a relationship right now, just coming out of one.
Does it frustrate you that you have to be in the position of educating them so that they understand enough to accept you. In other words, that must be an odd position to be in. You're trying to date someone, and they may not be too cool with it, and you can't really educate somebody so that they'll date you, you know? You're facing that societal ignorance on a personal scale.
Yeah, it's frustrating. Because, it's hard enough to be rejected in any circumstance and this is really hard. It's such a chore to have to explain. I've done it enough, but it still doesn't make it easy. It's still hard every single time I do it.
Do you have a way that you usually say it to people?
No, not usually. There's not a format I follow, but I don't wait too long, because if you let your heart get into it too far, then you're gonna end up hurt if they decide "No way," or they're gonna get upset with you, like, "Why didn't you tell me before?" But you also don't want to be like, "Hello, I'm Nicole, I'm HIV positive" right away either, you want them to know you as a person first.
I will usually, maybe after a few dates, tell somebody that there's something I'd like to tell them about. Sometimes people need a little time to think. Some people will already know, or they have a family member, or a friend, or a friend of a friend, who has HIV. I can share some information or someone else to talk to if they'd like to talk to someone about HIV or transmission. They can come to an appointment with me or an educational function to learn more about it.
My experience is that I am a very romantic, compassionate person. And I feel I deserve the same for me. I love me. And so I know how to love someone else. And so my search: I'm in a good relationship. Every relationship has little bumps and stuff like that, because you're trying to get to know an individual. But I also know that once I let someone into my life I have to remember that I'm carrying on somebody else's feelings, as well. So, me, when I'm in a relationship, what I do is, one, disclose.
If I feel the relationship is going to get intimate, I definitely do it probably the second or third date. Because I'll know if it's going to get intimate by that time. And I give that person a choice. You know, for me, it's not about the rejection; it's about that I give the other individual the choice to be with me. And I have been with negative people. And after our separation, they go get tested, and their tests come back negative. I'm a peer advocate. You want it to come back negative. You know what I mean? And so I know how to protect myself. I know how to protect my partner. My relationship has been good.
So you haven't had problems finding people.
No, I haven't had problems finding women.
Is it because you don't sit at home and feel sorry for yourself? I mean, so many people find that it's such a big challenge, they just can't talk; they can't bear to talk to other people about it.
Right. And I could not pinpoint on why is that. I mean, I'm still beautiful, inside and outside. I'm still a human being. I still need to be loved. Yeah, I know there are good vibrations, and stuff like that. But I want to be touched on. You know, hugs. I get hugs from my kids, my friends, and stuff like that. But a romantic, intimate hug is an entirely different type of feeling. So I want that. I've been that type of person ever since I can remember. And so I search for that, you know -- regardless if it's a romantic fantasy or not, I still want to be hugged by my partner. I still want to be kissed by my partner. I still want my partner to tell me, "I love you." I need those things. You know what I mean? It helps me.
I still need to laugh and get with my partner. We still need to have our funniest moments. You know? Where we can laugh and just think about them, and look at each other and laugh. You know what I mean?
Once [my husband] made the decision [to pursue a relationship with me], after entering a sexual relationship with me -- because we were dating and stuff, and I was holding off as long as I could to even tell him I was positive, which was about two weeks. We were going on a lot of dates, and he was trying to be really romantic. And I was giving these mixed messages because I liked him, but I had earlier experiences with even kissing a guy before I told him and then they freaked out. So I was really careful.
And then I told him after two weeks. He was very compassionate and sweet, right from the start. At the time I told him, he had been wondering, "Are you a lesbian? Do you even like me?" So when I told him, he was like, "Oh, that had to have been so hard for you all this time to have to keep that a secret." But he didn't say right away that he wanted to continue the relationship.
Around that same time, this earlier boyfriend who infected me with HPV, who I'd broken up with, was calling me all the time, trying to get back together. He wanted to marry me. One time, Robert was at my house and on the answering machine, Dan, this guy, was just leaving this long, drunken, "I want you back" message.
Well, that was kind of the day that Robert decided, "Yeah, I'm going to go for this." And he really has been wonderful, right from the start. It's the first time I've been in a relationship with an HIV-negative man (which was almost all of my relationships) where my HIV status has not been an issue at all. I feel normal. I feel like how I felt pre-HIV, when I felt like a normal person. So it's awesome. I love it.