This Positive Life: Nicole on Advocacy, Dancing and Making the Most of Life
March 20, 2013
How have your relationships with your family or your friends changed, if at all, as a result of your diagnosis?
I had one friend that, we kind of had separated because I started doing drugs and she wasn't. But we had been friends all through school. I think it was really hard for her. When I told her, she was scared. She didn't know how to react. That situation didn't go very well, but since then we've talked, and she said she was scared, and didn't really know, and felt guilty for not being there for me. But, for the most part, I've had so much support from my family and friends. Haven't really had any negativity or anyone shutting me out.
How has having HIV affected your relationships and your sex life?
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. It's not fun. [laughs]
Tell me something about your family background. What kind of neighborhood did you grow up in? And the reason I'm asking this, is, whatever that neighborhood was, do you believe it's easier or harder being HIV positive in that community versus the other options or the other luck people could've had?
I grew up in a middle class family in a suburb my whole life in Santa Rosa, California. My parents are very conservative, and a lot of my family is very conservative. I don't know, I feel like I got really good feedback from my family and friends and people in my community. I was 25 at the time, I had moved out of the house, and I was doing different things. From my experience, I had really good feedback from the people that I know. Recently, I put on Facebook, "Today is World AIDS Day," and I was doing a fundraiser for BABES Network -- YWCA, where I work. I sent it out to my friends and family, and I said, " I'm trying to raise money for this great organization. For those of you that don't know, I've been HIV positive for 11 years," and I put in parentheses: "If you don't know, you do now." I was wondering if I was going to get a bunch of messages from people, or if people were going to delete me off Facebook. But nobody said anything, but I did get a few emails saying, "Wow, I didn't know that. You look so good and you're doing so well. It's really good to see." In my situation, I feel like I had really good luck.
Did you do well, with that appeal, for the fundraiser?
Yeah, we did really well. The dollars are still rolling in.
Tell me about your health care and treatment. What has your health been like since you've been diagnosed?
I think that when I was first diagnosed, I had a lot of depression and anxiety. Mostly anxiety, but it was causing depression. I was sleeping a lot, I was trying to hide. And then, I didn't have to start meds until four years into my diagnosis, when I ended up here in Seattle I started. Once I got clean. I had some problems with warts and feeling fatigued, but that was about all. I was really tired and rundown and feeling yucky for about, I'd say about two weeks, but then my count started getting better, and my viral load went down to undetectable. I've always had stomach issues; I've had IBS [irritable bowel syndrome] since I was a teenager, but I still have some of those kind of side effects, the nausea and the diarrhea stuff. But if that's all I have to deal with, I can handle it.
How did you find your HIV specialist?
When I was in Sonoma County, the clinic that tested me gave me a packet. And I went to the Sonoma County Health Department, Face to Face was the program. I got my doctor there. When I moved up here to Seattle, I got referred from BABES Network, where I work right now. Wasn't working here at the time, but they gave me referrals and got me all hooked into care management and got a provider. Now, I have insurance through the YWCA and I go to GroupHealth.
What kind of relationship do you have with your doctor?
I have a really good relationship with my doctor. I'm very open and honest with her, I feel like I can talk to her about anything. I feel very privileged, because I think it's very important that you have a good relationship with your doctor. And that you're being totally honest with everything, because they're going to be your advocate for helping you stay healthy.
Do you keep track of your CD4 count?
Yes, I do. It's 976. And undetectable. But I've been 1,400, 1,100. I'm usually around 1,100.
Over 1,000 is really remarkable.
Yeah, so I'm really happy about that. Because when I started meds, my T cells went to 130.
What else do you do to keep healthy? Do you have an exercise or a diet program that you subscribe to?
I really enjoy dancing. I go dancing on the weekends. but I'm really busy at work. I think one thing that's really fulfilled my life -- I'm not happy I have HIV, but when I started working for BABES Network, and doing speaking and helping other women that are HIV positive, telling my story, getting more education, I think that has really helped me heal a lot, by helping others through their diagnoses and educating them. That's really made me heal quite a bit. And just learning. I try to eat healthy, I'm not a real health freak, but I try to eat well. I love to go out dancing, I love live music. I had hip surgery last March, so it's hard for me to go on walks or anything too far.
You are very trim! You don't have a big diet regimen?
I do a lot of dancing. Pretty much every weekend I like to go dancing. It's good exercise.
You've talked about the BABES Network. You were not engaged with the BABES Network before you were diagnosed with HIV. What were you doing before you were diagnosed?
Before I was diagnosed? I went back to college to get my degree in computer technology. I was at a little technical college in California when I found out I was positive. I did graduate, which was exciting, on time, with my class, which meant a lot to me, because I didn't graduate high school. At least I was able to complete that, even though it was really tough finding out I was positive during that time. But it was the year 2000, everyone was going to school for computers, so it was really hard for me to get a job, so I was working at a high school as a campus supervisor. I did study hall, Saturday school, detention, walked the campus, walked kids to the office when they got in trouble. That's what I was doing at the time, and I was cocktail waitressing in the evening at a little bar in the town that I worked at, so that's what I was doing for work.
So, the trajectory of your vocation really changed as a result of that.
Right. Well, one thing about California is that there was no peer support network. I didn't really know anyone else that was positive. There was a place where I got my health care and information, and I went to a support group with a therapist and a few other women. So, I didn't really know what it was like to talk to other women that were positive. It was really great to find BABES, a peer support program where everyone was positive, that was really neat and very supportive.
How did you become involved in HIV activism?
I sort of fell into it. The reason I ended up in Seattle was because I had gotten clean from meth. I had been clean for about a year, but I was having a tough time. I had to give up all my friends, I was working and really kinda lonely. I had a little Pomeranian, and he was my buddy, but I was having a rough time. So my mom lived in Washington, and so I moved here. She found BABES before I got here. She said, "Oh there's this place."
I came to a support group when I first got here. I met the executive director and she said, "You know, you'd be really good working here." They had a position open, I applied. I think the only thing they were worried about was that I had only been positive for three years, and clean for two. I said, "I'm ready. I want to do this." Which I never thought, when I was first diagnosed, I didn't want to talk about, didn't want anything to do with it. When I got the job, I started out as a peer counselor/ event coordinator, and then worked my way up and became the lead peer counselor/ event coordinator, and just last July I got promoted to the program manager. I've been here for seven years, and I'm really happy.