Personal Perspective: Discovering Myself
I'm originally from Tehuaca, a small town in Mexico. I was raised to believe that I shouldn't have sexual feelings; that those were feelings only men have. I was taught that a women's purpose in life was to serve her husband and her family. I lived a sheltered life, and left a home dominated by men to marry at 16 and enter a home dominated by another, much older, man. I was taught that I should take insults and mistreatment, and that a women's role was to be a martyr. I believed that my role in life was to serve my husband.
Shortly after I married my husband 17 years ago, we moved to a small town north of Chicago, Illinois. It was difficult for me, being unable to speak the language, far from friends and family, without any emotional support. My husband was often away, not only at work but, as I later learned, meeting both men and women for sex, and using drugs and alcohol. He began getting in trouble and was in and out of jail.
I had four children by the time I was 21, seven by age 27. I had a total of nine pregnancies since I knew very little about birth control, and my husband wasn't willing to use condoms or let me use birth control pills. Two of my children were lost in early pregnancy, perhaps due to the many sexually transmitted diseases (STDs) that I had: syphilis, genital warts, gonorrhea, yeast infections, herpes and shingles (several times). But I was never told they were STDs. I thought I was being treated for problems related to my pregnancy. No one ever asked me to have an HIV test.
The language barrier was a large part of the problem in understanding my health, but part of it was fear: fear that there were problems in my relationship; fear that I wouldn't have financial support for myself and my children; fear about my immigration status; fear that my health problems were more serious, fear that I might have HIV (yes, I had heard about HIV, but thought that it only affected gay men); fear that I wouldn't be able to get the medical help needed if I was diagnosed with a serious disease; fear about asking the doctors the right questions.
I think the people involved in my care should have been more proactive about asking questions about my sexual history, my husband's sexual history or other risk behaviors. Maybe it would have pushed me to ask questions, to open my eyes quicker, to learn more about HIV and perhaps decide to get a test. It would have helped me to ask questions about sex, about what an orgasm was, about exploring my own sexual needs as a woman. Maybe all I needed was that push to change my entire life.
I needed to face the fear of discovering myself sexually and understanding my own sexual feelings. Because I was infected sexually, sex would have a much different meaning for me in the future. I needed to understand what sex was all about and what it meant to me. And I would need to change my entire view of the world -- I had seen my role only as a person who existed to serve the needs of my husband and my family. In my culture, it was considered bad for women to even consider enjoying sex -- my role was to lie down and allow my husband to do his business.
What have I learned about sex and sexuality? I've learned that I am a person who has needs -- sexual needs -- that need to be satisfied. So my next step was to learn how to accomplish this, since I had never been able to before. I attended support groups where I became knowledgeable and decisive about my health. I met other Latinos who had been living with this disease for many years -- much longer than me. I learned that I was not dying and that I could lead a healthy life.
As I became healthier physically I also became healthier emotionally, becoming more trustful of people, including men. I was approached by single men at these support groups who wanted to get to know me better. But I was closed off from the world, and honestly felt no interest for any of these men who were also living with HIV. I began to ask myself if I should decide whom to date in this "microsociety" of Latino men in a small rural town in Illinois. But there are not many men who attend HIV-positive Latino support groups, for fear of being identified in the community as gay men or substance users. I later learned that some of them had engaged in risky activity such as IV drug use or unprotected sex with multiple partners (including other men) but that they did not identify as IV drug users or gay men.
It was almost three years after my diagnosis that I met a man I was comfortable with, but he was HIV negative. Fear began to creep in about how I would tell him that I was HIV positive. I continuously rehearsed in my mind how I would bring it up to him and what I would say. I jokingly thought to myself, "How bad could this man be -- he accepted the fact that I was a single woman with seven children. Why wouldn't he accept a 'tiny virus'?" It was a difficult but needed conversation where I let go many tears. He asked a few questions, also let go some tears, and left without letting me know if I would see him again. But he showed up at my doorstep a few days later to let me know that he didn't mind that "tiny virus." I know it was a very difficult decision for him to make. And for me, too -- until then I had believed that because I was living with HIV, I needed to have a partner who also had HIV.
It's been a year since we've met and, although we are not living together, we continue to see each other almost every day. We enjoy our sex life, and are very careful to engage in healthy and safe sex. We also keep up on any information that is available, and he attends some of the social activities for patients at the HIV clinic. He has been completely the opposite of what I believed men were like. He is aware of my needs -- my sexual and emotional needs. I've learned that I didn't need to limit myself to those men that belonged to my support group -- that love, sex, sexuality could all happen, and not necessarily in that order. I learned to move freely through what is seen by many as two different worlds, the one for those with HIV and the other for those without it. I learned that there were other couples where one was HIV positive and the other was HIV negative, and I learned that there a was term for those couples, "serodiscordant." I try not to label myself, the sex that I have, or the relationship that I have. All I know is that I feel well and am learning more about sex, sexuality and my own feelings about both.
I have learned that sex and sexuality come in many different forms, and that labels are not necessary. When my husband was engaging in sexual activity with men, women or whoever crossed in front of him, he put us both at risk for HIV and all the other STDs. It wasn't the gender of his partners but the sexual behavior that led to us getting HIV. I've learned that sex and sexuality are an important part of our healthy being. I never thought that sex should be enjoyable. I thought it was just a means of procreation and was done only to serve my partner's needs. At 32, with seven children and HIV, I can now say that I enjoy sex and have had an orgasm! I didn't know even that word existed before.
Because I am now more confident about sex and have freed myself of my cultural baggage, I can communicate better and am more independent. I have since been able to start my own business cooking and delivering meals to fieldworkers. Although I have not been able to learn English, I know that I can become part of the outside world and communicate with my limited English.
I don't feel like I have to serve my boyfriend but that we can satisfy each other mutually. My role is no longer to serve a man in all his needs; women have needs, too. Sex may not be the most important thing in life, but it's important enough that if done irresponsibly it can cause diseases or meaningless relationships, leaving you unable to enjoy a healthy relationship with a partner. It's been a process of learning and facing my own doubts, fears, and beliefs, but it was worth the journey.
I feel comfortable with myself now; in three years I have become another person. I can't say that it is all because of my attitude changes about sex and sexuality but that did play an important part of feeling comfortable as an HIV-positive Latina. I'm writing anonymously so that I don't place people's eyes on my children, since I still live in a community of mostly farm workers. Perhaps when they are grown I will be able to tell another story. In the meantime, this is the one that I need to tell now.
Juana D. is living with HIV in a rural community north of Chicago, Illinois.
Translated by Luis Scaccabarrozzi.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.