This Positive Life: Nicole on Advocacy, Dancing and Making the Most of Life
March 20, 2013
Don't you ever get tired talking about HIV?
No, I don't. I mean, sometimes I have a hard time with losing people. That's hard, because we call BABES a "sisterhood of women facing HIV together," and when women pass away it's really difficult and scary, because I could be in the same boat. I do take care of myself, I'm really diligent about doing all my appointments like I'm supposed to, I never miss my meds. Maybe once every couple of months, but I'm very good at taking care of myself.
You mentioned the peer support aspect of the BABES Network as something that makes it unique. Is that the mission of the organization?
Yeah, we're a peer program. So, we provide one-on-one peer support for women and their families living with HIV. We do support groups, advocacy, retreats, we have a newsletter that goes out that's written by our members. We provide referrals to medical and case management and other support services that women need.
What has doing this work taught you?
It's taught me a lot. It's taught me not to be judgmental. That it takes all kinds. That people come from so many different walks of life, and you can't generalize someone by just looking at them or hearing them say a word. You just have no idea; it's really brought so much fulfillment to my life. I had no idea that there was so much more out there than just this little world that I was living in.
What do you think are the biggest issues that need fixing in HIV today? What do you tell people that they might be able to do to change whatever that is?
I think people think that it's kinda gone away. People think, "Oh, there's a cure," or "There's medications, people do fine, it's not a big deal." The funding is getting cut all over the place, there's waiting lists for people to get on medications in America. Which is just beyond me how that's even possible.
I think it's really important for people to understand that it's important that they advocate. If we don't stand up and fight for what we need, what we demand, that we're not going to get it. I think that women are a minority, and a lot of people don't think that HIV can happen to women. But there's a high percentage of women who are positive in the United States, and a lot of women don't realize that. I think that women really need to step up, because we are really getting pushed underneath the rug and forgotten about.
Could you compare your feelings about living with HIV now to your feelings when you first found out you were HIV positive?
Well, now I still have my moments. There's times where I just get mad, and "Why did this have to happen to me?" and I have my little pity party and I get over it. In the beginning, I just kind of walked around in a cloud for a while. I couldn't believe that something like this could happen to me, and "Why?" I still have those moments sometimes, but I do believe everything happens for a reason. That's why I feel like doing the work that I do is very important, and maybe that's the reason. I'm saying, I'm not excited about it, I'm not happy about it, but I'm making the best of it.
Has your being able to look at it that way, is that what has changed for you? How has HIV changed you, or has it?
Yeah, of course, it's changed me a lot. I feel like I'm a much better person. I feel like, if I wasn't diagnosed, who knows where I'd be. I really wanted to quit doing drugs, because I wanted to be healthy and take care of myself, so I often wonder where would I be had I not gotten that huge news.
What advice would you give someone who was just diagnosed HIV positive?
Educate yourself as best you can. Learn as much as you can. Make sure you're looking at information that is up-to-date and factual, because there's a lot of information that isn't. Find a support network. Find someone else that's positive that you can share with. You know, not everybody feels positive disclosing to their family and friends, but finding someone that can give you that support and education. Going to your doctor and making sure that you're right on top of your health. Women sometimes put themselves on the back burner, they want to take care of their kids, their husbands, their jobs, their house, everything else before themselves, and you're not going to be able to take care of everyone else if you're not taking care of yourself.
Is there anything else that has not come up that you would like to discuss or like to include?
One other thing that I thought of when I was diagnosed was, "I'm 25, I'm never gonna get married, I'm never gonna be loved, I'm never gonna have children." And, I'm really glad to know that that isn't true. Here in Washington State, there's a very low prevalence of babies being infected with HIV. There are medications you can take, and the baby can take, and there's only a 1 percent chance. It's awesome. We have lots of babies -- babes, we call them -- being born.
I remember, in the '80s, even into the '90s, the idea of a woman having a baby who was positive was quite provocative. Even seen as irresponsible. Has that changed? Can she now do it with confidence that she's not making a choice that is a dangerous one?
I believe so. I think for herself, you never know. There may be a doctor out there who thinks it's not a good idea, or a family member or a friend. But if you read the facts -- if the woman's viral load is undetectable, and she's on medications, then when the baby is delivered, you can have a normal birth. You may get intravenous HIV medications while you're having the baby, and then the baby gets a liquid medication for the first six weeks of their life. I've seen women give the medicine to their babies, they don't seem to have any problem with it. The babies don't have any side effects and they don't get sick. It's definitely possible. It is toxic medication, but it's only for a six-week period and we haven't seen anything that shows that it causes any long-term side effects, so that's wonderful news.
This transcript has been lightly edited for clarity.
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