What are discordant couples silent about and afraid of?
Discordant relationships are when one of the partners has HIV, and the other does not - the topic is trivial, but many issues are swept under the carpet. Sometimes it takes a lot of courage to confess openly: "I am afraid of you." As well as to say: "I am afraid for you." AIDS.CENTER tried to get away from the usual clichés and talk to discordant couples about what the partners generally prefer to remain silent about.
"I would never deal with someone like me"
I have had HIV since 1999. My wife and I met at work. Back then, there was little information about the disease, as well as about therapy. But when we started getting closer, I told her about my condition in advance.
Interestingly, I had no problem telling all my relatives and friends about my condition, but I did with Lena. I felt very bad, I was afraid that she would leave and everything would end here.
This is probably because I am judging by my own opinions: I would never deal with someone like me. But she was not afraid. At first she didn’t even believe me, she thought I was joking. But I was not.
So we took a pause for a while in order to digest everything, and after a couple of weeks we started to go out again. We have now been married for 13 years. We have a baby. I don’t know how it would be if I didn’t come out right away. But our relations have definitely become much more honest and simpler since then, there are no secrets and unspoken words any more.
At that time, I also told her about my past, that I had got HIV by drug injection, that I had used drugs, but had quit forever.
The fear of infecting my wife remained. Although I know everything about the undetectable level, there is some paranoia anyway. You can never be completely sure what your viral level is at a particular time. I have a good commitment, but when it comes to the health of a person you love, that’s different.
“I fell into deep apathy. You know, there is such a silence inside when you are lying on the sofa and do not understand what to do. Fun life is over."
The child was born HIV-negative, but I'm afraid for him too. If he gets sick, it will be a blow that I might not be able to bear.
I have probably no other fears about the illness. I’ve been with HIV for 18 years now, and I don't care any more, but there are still limitations in our relationship. It's essential for us to use condoms. There are couples who cannot engage in protected sex. It's not a problem for me. Therefore, all our sexual contact is radically protected. We know about PrEP, but we don’t want to use it. This is still drugs, pills that need to be taken, not vitamin C.
It was not difficult for me to accept the diagnosis of my husband, because for me a person was always important, not the condition. I knew about the existence of such a disease, I knew that it was serious enough, but at that time it was not interesting for me.
Of course, on the one hand, it was a very important step, we even took a short pause, but I decided that I wanted to be with this person. And I stayed with him.
I did not ask anyone for advice or permission, it was "secret information". This is personal, you see, this is our relationship, and I don’t want to share it with anyone.
Some time after we began to live together I went to the hospital on Sokolinaya Gora to talk to Viktor's doctor. But even then I had no fear.
I worry mostly about our child. I don't even know why. But sometimes I worry a bit.
I always trusted Viktor. Before we conceived a child, we had discussed everything. I had taken pills as a precaution. And I can definitely say: I was sure that everything would be fine.
At the moment we have no issues left undiscussed. Although now we do not talk about HIV. It is enough for me that I know and understand.
In any case, trust is important. If you find it difficult, it is worth talking to other couples in order to better understand your relationship. And anyway, condition is not a criterion by which a person should be judged.
"After learning about the condition, my boyfriend offered to commit suicide"
We met at a party 12 years ago and have been together ever since. At that time, people met in real life, and were not all on Grindr or Hornet as they are now. Three weeks later we became a couple. Sometimes we invited a third person for sex and now we think that this is exactly how the infection happened.
We learnt about the fact that Mikhail got sick like everyone else: first there was a fever, so we went to take tests. It turned out to be HIV.
At that time, we had been together for six years, our relationship was not so hot any more, and we had sex quite rarely. Which to some extent saved me. It was hard for me to accept his diagnosis. I fell into deep apathy. You know, there is such a silence inside, when you are just lying on the sofa and do not understand what to do. Fun life is over. It's like entering a different period.
And yes, now everything is not what it was before. There is a lingering grudge. Not against him, of course, but against what happened to us. He does not tell me what his level is and does not explain the details. He does not take me to the doctor, even if I ask. Maybe the day will come when we talk about everything openly.
I think that after six years since that incident, Mikhail has not fully accepted his diagnosis. I see how hard it is for him. He will have to take pills all his life, and it depresses him.
In addition, every time we go on a trip, we have to decide who will carry the pills and what we will say if they stop us at customs. Or what to do if, God forbid, the bag gets stolen during the trip. In the end, we agreed that each time we would divide the therapy drugs by half: I’m taking part of it, and he is taking his.
I do not take PrEP, it is too expensive, so we only use condoms. We check everything very carefully. Sex doesn't happen frequently, though. We are good together, we get along, we are friends, we love each other. He is not to blame for anything. We want to live together, and I invest a lot in this relationship. You can break up in two minutes, but starting a new relationship is a big deal.
I accepted my diagnosis easily. Unlike Kirill. There was one moment: we did not yet know his status — only mine — and were waiting for his analyses. It was very hard - he even offered to commit suicide. That's how nervous he was. But when it turned out that everything was alright with him, he calmed down.
Not that I was ready to know my status, but I already had HIV+ friends, and I understood that it was not fatal, that life would not change much.
When it all happened, I didn’t think of ending my relationship with Kirill. Moreover, Kirill supported me very much then, and if it were not for him, everything could have been different now.
"We don't go to the AIDS centre together, because I hate this place."
Now I even joke that I will be the first to “kick the bucket”, and he will have to be stuck here alone when he is old. Actually, I became more liberated with HIV, I began to save less and do things that I had previously refused to do. I even thought of composing a To-Do List in order to do everything in time. Oddly enough, after we found out about the diagnosis, our life became brighter.
However, not everything is so smooth. I am very afraid for my boyfriend, I am afraid that he might get infected by me. And I'm afraid for the people around us. Maybe that's why I have had practically no sexual intercourse so far. Even though I know that I have an undetectable level... It still sits inside. And does not let me relax.
However, we are at that age when sex is no longer the main thing in the relationship. The older you get, the less sex there is, that's always the case.
We do not go to the centre together, because I am strongly against such visits. I hate this place, the people here and the number of them scare me... I get a lot of stress from all this, and I don’t want him to get it, too. I do not like the fact that I see more and more of our mutual friends there. I get upset when I find out about them, and I don’t want them to know about me. That's it.
“I confessed to her because I was semi-delirious”
I cannot say that we both were in good condition when we met, because everything happened in a psychiatric hospital, where we were on rehabilitation from drug addiction and alcoholism.
He immediately told me about his status. I just took note of this. After all, it was not the first clinic for me. I knew it happens.
It so happened that as soon as our relationship started, Vlad was kicked out of the hospital because relationships between a man and a woman are prohibited there. This very much prevents people from focusing on recovery, it turns out to be a sort of a substitute.
However, I went after him. My life at that time was a mess: my child was taken away, I lost my job, had no friends. Vlad compensated for everything. Later, of course, I became more conscious and started to ask myself questions about this relationship. But the problem of his condition has never been paramount.
“Although I know that I have an undetectable level... It still sits inside. And does not let me relax."
My parents still do not allow me to come with Vlad. They are afraid. I tried to convey some information to them, but they do not want to bother. They don't want to see him in their house.
When I left the clinic, the head doctor told my parents why I was leaving, and revealed his status to my relatives. It was illegal, but it happened.
I always protect myself. Not so long ago we went to a support group, and they said that it was possible not to do this, that “H = H”, but I cannot live like that. My life is too dear to me.
Six months after the hospital, I got hit by a car. I was on "the other side", and after that I finally returned to a sober life. I decided to take care of myself. For the first time, I started to live for myself. Not for a child, not for a relationship, but for myself. Vlad, thank God, does not press on me, although there have been attempts.
However, the support group has helped me a lot, because sometimes I had fears even when I used protection. So I went there to support Vlad and gained knowledge for myself eventually.
It was good for me to see couples where people do not get infected even without protection, and I became less nervous about that.
We talk about children, but casually. And usually he speaks, and I am silent. We still cannot understand each other, but to have a child, we need to have a stable relationship.
Since we both are anonymous drug addicts, alcoholics, we try to live by the principles of patience, humility and forgiveness. Sometimes I have the thought that it is possible to find a healthy person and not bother at all, but today my decision is to be with him.
I told her about my condition immediately, right on the first day. But it is necessary to note that I was experiencing awful withdrawal then and could just as well confess to the murder of the Dead Sea. On the other hand, a clinic is like a submarine, a closed space. And I am already used to talking to everyone honestly.
The state of my mind was far from ideal and I was in a semi-delirious state, so there were no particular worries. She seemed to have taken it all calmly. But mutual sympathy came to us much later.
“Anyway, you are thinking about how not to infect your partner. Besides, I already had a negative experience. My ex-partner was infected by me.”
Our relationship is far from being a fairy tale, we have been through a lot: my breakdown, her breakdown. During the 8 years together we have had such things that people wouldn't have in 100 years.
After the rehabilitation, I did not understand what had happened: there is a woman at my side, but I don’t know what to do next. I have been positive since 1999. I am calm about my diagnosis, I live as I used to.
It's just that sexual problems arise due to constant protection. Anyway, you are thinking about how not to infect your partner. Besides, I already had a negative experience. My ex-partner was infected by me.
I had an undetectable viral load then, but the duration of treatment was short. Because of this, I do not accept the concept of "H = H". It is safer with a condom.
I feel uncomfortable about always having to use protection. I call it the stage of chronic malnutrition. That is, there is sex, but you don't feel there is. You kind of ate, but feel hungry again. We didn’t think about PrEP, it’s very difficult for Yevgeniya and me to talk about it because it sounds like pushing my interests - and this is not the way out.
We have only recently begun to talk about her fears. Not so long ago, we went to a support group for discordant couples, and I saw how she changed when the stereotypes were dispelled.
Of course, I want her to not be afraid, because fears affect our sex life.
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And with us this is not easy. The doctor in the rehabilitation centre added fuel to the fire: we didn’t want to tell her parents, but she let everything out. She told them: “You can’t even imagine who your daughter is dealing with.” They were literally in panic.
I had been depressed by this issue for a long time, but now I have come to terms with it. I do not know if they are putting pressure on her, she does not tell me about it. They probably are.
The problem is that Yevgeniya knows all my secrets. Everything about my past. She knows about the woman I infected. There were moments when, in anger, she recalled this story, and it was very painful for me. Of course, I would like to go back and erase something from my past. But it does not work like that.
We talked about having a child, but there are a lot of factors: both our social unsettledness and age. Until recently, Yevgeniya was convinced that a discordant couple cannot have a healthy child. I even thought through an alternative option - if we can't have our own child, we’ll think about adoption. So now I'm waiting for the perfect moment. But it doesn't come, damn it.
Alexander Tesler, psychotherapist:
“The most important thing for a discordant couple is overcoming the psychological barrier, because the negative pressure on HIV-positive people in society is being intensified, the media inflates horror stories about HIV-infected people. It is necessary to educate people - this is the best prevention. People who live as discordant couples are already aware of everything, they have the opportunity to get new information. So for them this is not as much of a problem as it is for others, especially for relatives. Such couples, for the most part, are very loving and arouse not only pity in other people, but also respect, envy and anger. After all, HIV is not the devil's mark on the forehead, but just a disease. The fears of such couples relate mainly to child planning. And these fears are often induced by relatives: grandmothers, grandfathers, parents, and so on, which, with all due respect, should be referred to last. As we know, the road to hell is paved with good intentions. Of course, partners are also afraid of the fact that a person whom they know as active and sanguine, will suddenly become ill, disabled and not what they used to be. The fears are exactly the same as those of ordinary people.”