HIV negative woman with positive man - how do I cope?
May 14, 1998
Dear Dr. Shernoff:
I don't know how to make this concise - everything seems so complicated right now that it's hard to put it all into a sentence or two.
I am a woman who has been involved for over a year with an HIV+ man. Because he had been having unsafe sex several years ago in high-risk areas such as Morroco, he always insisted on using condoms with me. After he told me his history, I encouraged him to get tested in spite of his fears. His test came back positive last September: he has HIV-II. I was tested at that time, and HIV was not detected.
Until September, things had been going extremely well for us, and I was feeling very happy and hopeful until the diagnosis. Considering that we had both recently overcome some very hard times and were, for the first time in a long time, feeling peaceful and happy, his diagnosis was devastating. I felt as if I was being punished for being happy. However, I don't quite know how he felt at that time, as he seldom wants to broach the topic of HIV/AIDS on his own. When I bring it up, he will talk about it a bit. However, the fact that he won't bring it up makes me feel alone, as if he hasn't considered how huge this issue is for me. This leaves me feeling resentful. I ask myself, "Am I being taken for granted? Am I automatically expected to handle everything with ease?" Occasionally, I feel resentful that he brought this "thing" into my life. Sometimes it even feels as if he brought someone else into this relationship along with him....someone who has left an unhealthy reminder of a sexual encounter floating around in his veins.
I understand why it must be so difficult for him to bring up such a heavy topic, but sometimes I get tired of being understanding. Sometimes I want someone to recognize my need to be heard and my need to be asked, How do you feel about this? I feel silenced.
Also, although I've never strongly desired to have children, it's really difficult to accept that it is out of the question now. Suddenly everything is different when you know you can't have something. I'm not sure why the issue of children troubles me so much, but maybe it signifies yet another loss of choice, freedom, and options. I know there are ways to give birth to healthy children in HIV+ cases, but these involve being on triple-drug therapy, monitoring viral loads, and so on. Because my partner has HIV-II, his viral load can not be monitored. So, having children is not worth the risk.
And, HIV-II scares me more than HIV-I. There is no way to test viral load in such cases, so HIV-II seems insidious, sneaky and frightening. Is AIDS lurking just around the corner? Will my partner suddenly get sick and I'll be left with only a short spell of good memories and a long road ahead of pain and care-taking? We don't know, and we have no way of making an approximate guess. There is too much uncertainty.
There is the issue of trust, too. I've heard that HIV-II is very difficult to contract because it is a weaker virus than HIV-I. It doesn't matter whether he contracted it from a man or from a woman, but considering that this is a weaker virus, it seems to me that it would be easier to get it from sexual relations with a man. My partner insists that he has never had sexual contact with a man, and I'm not sure why I am doubtful of this - there are no obvious "clues". But I do know that honesty is more important to me than anything. I hope he has not lied to me.
The HIV diagnosis has certainly changed our lovemaking. Although we were always using condoms, other things have changed. Some of our activities (oral, deep kissing, etc.) before the diagnosis were low-risk, but we became extremely cautious afterwards. We are careful about brushing our teeth before kissing, checking cuts or abrasions on our hands before touching each other, etc. This has become more natural over time, but sometimes it seems so cold, clinical and lacking in spontaneity. And I don't care what anyone says: oral sex with a condom is not pleasant.
I did not return to the clinic for another HIV/AIDS test, as recommended by the doctors there. I'm afraid to be tested again because our activities, although low-risk, were not always perfectly safe. We haven't even dealt with my partner's diagnosis yet, nor does he want to speak about the situation. How, then, would he be able to help me deal with the results of mine if they turn out to be bad? I am afraid to be left alone (emotionally) to deal with this. I already feel alone, and that's bad enough.
In general, our communication has been good about most things, but when tensions arise, communication breaks down and he becomes distant and cold. He sees a social worker at a local AIDS organization regarding addressing his feelings in general, and as they relate to HIV/AIDS. I hope this will help, because the less he communicates his feelings, the more lonely I feel.
Some of our troubles are probably typical of any relationship, but I know some of them are related to feelings regarding HIV/AIDS that seldom come up. Someone said, "It's like having an elephant sitting in your living room, but nobody wants to mention it." In this case, it feels more like an elephant sitting on my chest.
I remind myself that anyone can get sick with any life-threatening illness and I try to convince myself that our situation would be the same if one of us had come home with a diagnosis of cancer, tuberculosis, or mental illness. But it seems so different when it relates to sexuality and sexual relations. A diagnosis of HIV+ is like hearing that you or someone you love has cancer, tuberculosis AND mental illness - all at once.
I don't have any specific questions for you, but hopefully you'll read something "between the lines" that you feel needs addressing. Due to my loneliness, and after reading your warm and thoughtful responses to other people, I felt inspired to write to you.
Response from Mr. Shernoff
I hear your pain and isolation loud and clear. All of your feelings, fears and concerns are perfectly normal, and it is an enormous burden for you not to be able to openly discuss these crucial issues with your partner. Dr. Robert Remien, at the New York State Psychiatric Institute has been conducting research on mixed anti-body status couples. Some of his findings confirm the painful and disconcerting experiences you are describing. Unfortunately, both Dr. Remien's research and my own clinical experience confirms that all too often couples do not acknowledge directly the impact that HIV has on their relationship. As a result they do not talk about these difficult issues enough.
I would only suggest two things. One is that you tell him exactly how you are feeling about his inability to talk about these issues and that this leaves you feeling isolated, lonely, fearful, emotionally distrustful and that you have no one to turn to to talk with about this. I would urge you to suggest that the two of you see a couples counselor who is very experienced in working with couples where one or both have HIV in order to get some professional help in working on these important issues. In addition, it seems clear that you need your own supportive environment to share what is going on with you. This can take several forms. One might be a group composed of other care partners of people with AIDS. Usually such a group is run by the local AIDS organization. Sometimes they also run couples groups for couples living with HIV/AIDS. These are enormously useful. My partner and I attended a couples group for almost two years until he died from AIDS. It was the single most important and useful resource we had as a couple for coping with his illness.
In addition you might want to consider your own individual counseling.
I hope that these suggestions and observations are useful.
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