Ordinary but Infected
My husband recently told me he tested positive for a venereal disease, and I would have to go get tested. His excuse for this was that I am too cold and I don’t give him the kind of sex that he wants. So he had to go look for it elsewhere! As far as I know, this isn’t true; I can’t think of him requesting any sex act that I refused to do. The opposite is the case—he doesn’t ask for anything, he turns over in our bed and goes to sleep rather than making love. If anybody has been denied “conjugal rights,” I think it’s me.
I was pretty angry with him, but I went to see my doctor. I was afraid and ashamed to tell him that my own husband might have given me a sexual disease. It turns out I have much more than a case of gonorrhea. I am HIV-positive. When I told my husband this, he actually had the nerve to accuse me of giving him AIDS!
I have not seen him since we had a fight about this. He packed a suitcase and left our home. I guess I should be filing for a divorce? But I can’t seem to think straight. This news has left me shattered. I don’t know where to go or what to do.
I have never met anyone with AIDS. It’s a disease I only heard about on television or read about in magazines. I feel so frightened and alone, I don’t even dare look up information on the internet. How would I be able to tell what was true and what was just garbage? But I thought you would know where I should start. For some reason I feel ashamed and yet I did nothing, nothing, to bring this on myself. How could my life be destroyed when all I did was work at my job, raise my children, and hope my husband would come home and be a little bit less of a jerk? Yet I even feel guilty that he left me, as if I have failed to be a good wife.
HIV and AIDS have largely disappeared from the mainstream media. Now that there is a cocktail of drugs to postpone the retrovirus from progressing into a terminal phase, infection with HIV is being compared to diabetes. It is not a very good metaphor, in my opinion. HIV is still a serious infection with no known cure. We don’t have a vaccine to prevent infection, and we don’t have any way to eliminate the retrovirus from someone’s system. But it is a disease you can live with. And I want to emphasize that one word—LIVE. Honey (I hope it’s okay I say this to you in a sympathetic, not a sexist, tone of voice), your life has NOT been destroyed! You have a lot to LIVE for. You have children, you have your own sweet self, and you have a lot more freedom and space to breathe now that your “jerk” of a husband has disappeared. (Personally, I don’t think he sounds like he even deserves a jerk. If there was justice in the world, he wouldn’t get any more sex, frankly.) We just need to take a few steps to guarantee that you can keep that freedom, and make sure you stay healthy. Then you can proceed to find out just how fabulous your LIFE can be.
While it is possible to contract HIV during any sex act, I wonder if your husband is not a closeted gay or bisexual man. That would explain why he turned away from you in bed so often, and also explain why he took off to start a new life of his own. Closeted guys are so guilty about what they are doing that they often can’t manage the extra effort that it takes to play safe. They may not ask their partner to use a condom, in other words, because they don’t plan ahead. Every episode of man-to-man sex is a spontaneous reaction to an unexpected opportunity to be naughty, or the reaction to a crisis of desire that has gotten too intense to ignore any longer.
If this is true, you have no reason to feel guilty about “not being a good wife.” There is no way you could give him what he wanted in bed because he wanted another man. Actually, even if he is as straight as a lamp post, he has treated you so shamefully, I think the whole class will agree that any burden of guilt ought to be piled on his head, not yours. You must have been raised to feel that a woman is lucky to have a man—any man—and that she is obligated to bend over backwards to keep him. Well, stop feeling that you must accommodate abusive behavior to keep a guy around, and don’t believe any nonsense about needing a man in your home to be worthwhile. Buy flowers instead, they are lower maintenance and less expensive.
When you do feel ready for love, make sure it is with someone you can talk to about your health issues, and trust to take precautions. You shouldn’t have to work so hard taking care of somebody while praying he will be less of a jerk. How about a man who surprises you by being so nice, and better every time you see him? Such relationships DO exist!
It’s important that you contact an attorney to protect your legal rights. You don’t want your husband filing for divorce without your knowledge. There are important financial and child custody issues at stake. Also, you are probably entitled to child support. Ask your friends for a phone number of an attorney they worked with and trusted. The state bar association also gives out referrals for free. Nolo Press publishes books on how to do most of the paperwork for a divorce on your own if you are strapped for cash. I don’t recommend you use a legal self-help book if you live outside of the United States or if you have complex property issues. If you need to request state assistance like welfare while you look for a job or housing, that agency will usually track down your husband and take action to get child support paid by him.
Don’t be afraid to go on-line and look for information. I think you can tell the bullshit from the good stuff. The National Women and AIDS Collective (www.nwac-us.org) is one agency that can direct you to testing services, peer support, and other resources that are gender-sensitive. There’s good info about HIV written by women, for women on She-to-She (www.she-to-she.com). And the activist Positive Women’s Network can be found at www.pwnusa.wordpress.com. They have a great piece of research about HIV-positive women you can download from their website called Unspoken: Sexuality, Romance, and Reproductive Freedom for Women Living with HIV in the United States. It documents the struggles and the ingenuity and creativity of women like yourself who use every resource at their command to make better lives for themselves in a social context that is often hostile toward them.
There is probably an AIDS Service Organization (ASO) in your city. Call them up or (better yet) go in person and ask what services they have for HIV-positive women. If they try to tell you all their groups are for men, tell them that is discrimination. If they don’t have a support group for women, start one with their help and sponsorship. If they won’t help you, see if you can access support through a local women’s center, clinic, mental health service, an urban church that works with folks who are under-served and under-represented, or even a legal agency for low-income people. You can seek out services from a rape crisis hotline or Planned Parenthood. Be ingenious, cast a wide net.
I can guarantee that you are not the only woman who is HIV-positive where you live. By creating a place where people can come to talk and share their stories, you would be doing a huge mitzvah (good deed). Simply knowing one is not alone is a first step toward being able to change the world. AIDS is a map of oppression. While there certainly are middle-class, privileged people who get it, it is a disease that outlines discrimination based on sexuality, race, gender, immigration, prostitution, laws against drug use, etc. When people stop blaming themselves for being infected and realize that usually, like you, they had little or no choice, they can feel empowered to demand better treatment and perhaps start finding better lives for themselves. If nothing else, they can find a sense of fellowship and understanding that they never would have had without a support group where it is safe to tell the truth.
I hope you can find the resources you need. It often isn’t easy. You have to educate yourself because you will need to be your own advocate. This is not fair. The person who is ill should not have to be the one who does the hard work of education and political activism. You should be able to just focus on yourself and staying well. But we don’t live in that kind of a world yet. We live in a world where only healthy people who can work hard are valued, and the folks who are sick or disabled are not. You might want to read Susan Sonntag’s excellent essays about AIDS and cancer. She reminds us how poorly public policy once managed other diseases.
Many people are still afraid of those who have HIV or AIDS. They have silly ideas about how the disease gets transmitted. They discriminate against people who have it. So you need to be able to stand up to that kind of bullshit and make sure you are not treated badly for something that is not your fault. Some people with AIDS have organized community forums to fight discrimination and win their neighbors over to help combat ignorance or discrimination.
For now, I think you have to set much simpler goals. You need an attorney to file for divorce and seek out child support. If you were depending on your husband’s income, you need an affordable place to live and a way to support you and your children. You need a doctor who can inform you about treatment for HIV and monitor your health. You need to figure out what kind of nutrition and exercise will keep you feeling strong. And you need friends who know about your situation and will support you for dealing with being single and having a disease that scares the crap out of people who have not had to learn the truth about it. And you need to decide whether to tell family members about what is going on.
An ASO may help you to find low-cost counseling so you can get knowledgeable guidance about all of these tasks. They are pretty daunting. Just remember that you can prioritize and break them down into smaller (much smaller) steps. By doing a little every day, you will get them done. And in the process you will discover that you are a strong and amazing person, not a victim or someone to be pitied. Please feel free to write to me again at any time. In between letters to me, I definitely recommend you read POZ magazine (www.poz.com), a great resource for HIV-positive people and their allies.