September 15, 2011
"Don't give up. Educate yourself and find something that appeals to your psyche and to your inner peace to help you deal with the information you will be getting, because some of it is scary," says HIV advocate and long-term HIV survivor Lucia. In 1989, this Cuba native received a mandatory blood test in the hope of gaining her U.S. citizenship, but was utterly shocked when she was told her test results came back positive for HIV. Lucia, who was also pregnant at the time of her diagnosis, opens up about being pressured to have an abortion, the long journey it took for her to feel at peace again and why speaking publicly breaks down the walls of stigma in her community.
This is Bonnie Goldman reporting for TheBody.com. Welcome Lucia to This Positive Life.
Thank you for having me.
Tell me, how did you first find out that you are HIV positive?
It was 1989 and I went to the immigration office in hopes of beginning the process of becoming a U.S. citizen. The first step is to become a resident of the United States, and at that time, I was given a blood test for all STDs [sexually transmitted diseases], including HIV and that came back positive.
So what happened?
I was given a year to get my affairs in order. I definitely had no interest in pursuing my citizenship at this point; I needed to have so many other things in place. I was also pregnant, and at the time I was advised heavily to have an abortion.
So the journey began as far as finding out how the heck I had possibly become infected since my spouse of, at that time, 13 years was negative. I didn't have any more of an answer than they did. I had never been hospitalized or been a drug user or displayed any risky behaviors. Had only been in two serious relationships in my life. The only thing I did contribute at the time was that I had been sexually active one time with my previous boyfriend. That was dismissed, because that was over 10 years ago and there was no way I could be alive given how short of a lifespan people with the virus were living at that time.
The doctors believed that I had been recently infected. My blood, after many, many, many tests, ended up at the CDC [U.S. Centers for Disease Control and Prevention], which was the final confirmation that I was in fact positive, because it was just not being accepted too easily. I can't even tell you how many labs -- how much blood work -- I had to undergo just because they were in total denial.
But after awhile, I realized that I was infected at the age of 16 by a hemophiliac boy I was with in high school. He passed away a couple of years ago. Neither one of us knew he was positive, and we were having unprotected sex. I was a virgin and didn't know much about sex. It was a one-time thing, because I wasn't thrilled about it, just the first time.
Why did they not think you were positive?
Because I didn't fit "the category." I was not promiscuous and had been in serious monogamous relationships in the past. I was 27, 29 at the time when I was diagnosed. Without a hospitalization, blood transfusion or any drug use, they just didn't know how the heck I could have possibly contracted HIV. But they told me to abort the child and that was that.
What did you do with the recommendation about abortion?
That was the hardest choice I ever made in my life, to give up something I desperately wanted, but that was what I had to do. I was put through a lot of guilt -- mainly by my spouse and the medical community as well. The chances of the child being born positive were high from what they were telling me.
My ex-husband was an accountant and he took the chances as being stronger than the facts and he would ask how could I be so selfish to want to bring a child into the world with this.
How many months pregnant were you?
Maybe a month.
You had a lot to deal with in a month! That just seems like so much.
Yes it was. But I was fortunate. I don't know if I'd have called it fortunate at the time. I'd call it fortunate now, because the stress I was under was going to kill me faster than the actual virus that had managed to live within me for who knows how long.
I had to get a grip and I did: I had enough people, good people, my so-called angels that came into my life. Religion was the first journey, eventually leading to psychology. I found some wonderful psychologists that worked with me. We didn't really talk about HIV -- this therapy was more about saving my marriage. It was what I needed at the time to get strong and the journey turned out to be more about self-love and learning to just count each day as a blessing. Consider it a gift to be alive and breathing.
When you were first diagnosed, did you tell your parents at all?
I told my spouse immediately and then I told my mom and she was just the most supportive and just an incredible person -- still is my best friend. I couldn't tell my father, because he had passed away.
During this time, HIV was really stigmatized. Did you tell any of your friends?
You're right, HIV was very stigmatized and the information out there wasn't the best. Home computers were not something everyone had at the time. The information that was available catered mainly to the medical profession and not the everyday person. Given that, I fully began to do public speaking behind my husband's back, which he was not happy about. I would speak when I was off from work.
What were you doing at the time?
I worked for an air-conditioning company as an accountant.
Why didn't your husband want you to speak publicly about HIV?
He was a sole practitioner and was afraid that people were going to find out and destroy his reputation and his business. I think he still is worried about it to this day. [Laughs.] We remain friends, but I believe he's had a long journey with this.
Speaking of jobs: Have you disclosed at any of the jobs that you have had over the years? And if so, did any co-workers bother you or anything?
No, as a matter of fact, if anything, I've been in their lives. I had one girl that was undergoing MS [multiple sclerosis] treatment. She felt that I was the one person that she could come talk to about what was happening to her. Another had hepatitis C for example. Cancer, whatever disease, you name it, I was the person to go to for strength.
So what has given you the strength to come out about your status?
Although I'm Hispanic, I don't come across as Hispanic. When I moved out here, I had no clue what was happening within my community. It prompted me to take action and do something. The next thing you know, somebody's offering me a job in this business and one thing is leading to another. I did not speak very fluent Spanish and the next thing you know, I'm brushing up on my Spanish.
Earlier you mentioned that you were trying to gain your citizenship. Where are you from originally?
What information should every HIV-positive person know?
First, that you have to take care of yourself. Your mind is the first thing that needs to be intact. I know we talk about diets, but in my opinion, your mind is the most important. You have got to grab a hold of yourself and come to a place where you are happy with who you are.
From that point forward, you start doing all the right things for yourself. Reduce stress as much as possible. Most importantly, don't lean on drugs and alcohol to help -- I can't see how they could possibly help you. But to be clear, I'm not including marijuana in that. I'm leaving that alone, because I think there are more benefits than negatives.
What has HIV taught you about life?
It's taught me how precious life is. It's taught me how important family is. How important your friends are.
Over the years, have you mostly kept the same friends?
Yes, I have lifelong friends from way back when I was married. But I have to admit, nowadays, I don't have enough time for friends unfortunately. [Laughs.] My commitment to doing what I'm doing really limits my free time.
Are most of these friends in Florida or California?
Most of them are in Florida. Most of them are attorneys [laughs] from my office where I worked or previous family members from when I was married.
How long were you married before you got divorced?
All together, we were together 20 years.
Wow. So were you recently divorced?
God, it feels like a lifetime, but I think it's been 10 years.
He lives in Florida?
Have you found love since?
Oh, yes. Yes.
Is it easy to find love when you're HIV positive?
No. No, it is not.
What do you think are some successful ways in which to find love?
I think when you're not looking for it to come. I'm sure you've heard that a million times. When you're not looking for it, and you are more focused on your passions, it seems to open you up to all of these possibilities -- and even a lot of people.
But I did find a really wonderful man and he's just an incredible human. He is on my side, incredibly encouraging and supportive of the work I do and who I am.
Do you think it's easier for positive people to meet or have successful relationships with other positive people?
I think it is. I think the Internet, even though that's how I met him, is probably not the best way to meet someone. I think there is something that's missing from that -- you know, that attraction that you get with a person from the get-go in a normal encounter. But I do believe that, when two positives meet, it sort of makes everything normal again.
I'm not your typical dater. Let's put it that way. I'm very conservative in whom I date. In terms of disclosure, I knew that I had to disclose before it got any further than a kiss. That was always a heavy trip to have to undergo. You know, having to tell someone, because it was his life in my hands and I was not about to destroy anyone's life. You just need to let that person make a decision. It's the right thing to do.
Looking at your own personal experiences, is disclosure the hardest part about being HIV positive?
The other thing that's difficult is not having a role model or mentor. It's quite frightening when you test positive and there is so much you don't know. You're learning all these medical terms and you're just not sure what's going on. Your labs can be up and down, and it does take an emotional and physical toll on you if your labs are not encouraging over time. I've been very fortunate to have gotten, and still get, good ones. Very fortunate, but I can also tell you, just from observing a lot of people, how much a negative result can bring them down terribly.
Are you on treatment now?
Yes, I am.
Could you tell us what your treatment is?
Have you had side effects?
When did you start?
I started almost five years ago.
That was the first time you started?
Wow. It hasn't interrupted your life very much?
Not really. If anything, I'm obsessed with what I'm doing as a living; I need to take a vacation from it. It's been a while since I've been on vacation. But it's hard for me. I know that I'm just one person, but when I get the call to speak, I do it, because there are a lot of women who just don't want to speak out publicly.
It takes a lot of bravery.
I don't think it's bravery. You have to look at the bigger picture. I understand the fear that takes place, that overrides the beauty that all these Latin cultures have, because they don't understand. My community to many times allows myths to shape its understanding of this epidemic. And it's really sad, because when a person is first diagnosed, what they need the most is their family. If they have the main thing there, anything is possible for a long healthy life.
You think too many people are isolated?
What advice do you have for someone who is recently diagnosed with HIV?
Don't give up. [Laughs.] Educate yourself. It is extremely important. Find something that appeals to your psyche and to your inner peace to help you deal with the information you will be getting, because some of it is scary. It's scary as hell. If you have something inside you that keeps you calm, you will navigate through it beautifully.
What do you have inside of you that keeps you calm?
God. I guess that's it. I'm not religious though, but I have an incredible belief in something greater than myself.
That keeps you steady and balanced and ...
Yes. I also adore animals, so that's another thing. [Laughs.]
What kind of animals do you have?
I have a cat right now.
Have you always had animals?
Yes. For as long as I can remember.
How do they help you?
They help you find that peace. There is something so remarkably beautiful about their innocence. If you're having a bad day, all you have to do is look at their little faces and it all makes sense.
How did you educate yourself about HIV -- or how do you on a regular basis?
Mainly reading, just information on the Internet, but the majority of my knowledge on the disease came from books. My partner studies medicine. He's very up to date on just about everything that's going on. He's a great person to turn to.
Were you always knowledgeable about HIV?
No. No, I've had to learn a lot more things than I ever thought possible.
Where are you working now?
I work for an agency called AIDS Community Research Consortium; better known as ACRC. I'm actually here teaching a class, because a lot of the clientele here have issues as far as getting on a train and coming down to Redwood City, which is in San Mateo County. I'm finding out that it' s not so much that they are afraid to get on the train; it's the time of day. We usually do it in the evenings, because most of my clients work. It seems to be different in the city. Most of the people do not necessarily work. Different health care plans.
I see, so this is just kind of your satellite location.
What do you think is the most important thing that someone with HIV should know?
That they should not give up -- that's a hard one. I would say they're not alone. There is help. All they have to do is just look for it. But there is plenty of help and assistance in every possible area. Not to give up.
And with that, this interview will come to an end. Thank you so much for sharing.
This transcript has been edited for clarity.
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