Modern therapy allows the HIV-positive a person to reduce to zero the possibility of infecting a partner. Dating sites for creating an HIV + family are gradually disappearing into the past, couples are created in which partners have different HIV status. In Russia, there is no accurate statistics of such unions, it is only known that their number is constantly growing along with education on the topic of HIV. We talked with Alina and Maxim (the names of the heroes were changed at their request) in order to understand how they live, what they talk about and what problems people face in such families.
text: Anna Bockler
I followed the example of Hannah from the “Girls” series to take the HIV test. In one of the episodes, she is haunted by the fear of infection, Hannah googles the likelihood of this and eventually makes an appointment with the doctor. While watching the sitcom, I suddenly remember that after unprotected intercourse in 2011, I suffered a severe follicular sore throat. Of course, when your throat hurts so much that you lie in bed for a month, swallowing antibiotics, you don't think about HIV. But I assumed that the acute phase after infection could pass in this way. Thus, in 2013, she found out that she was HIV-positive. Thanks to your favorite TV show and your sixth sense, not much later. Of course, I tried to pick up some other version of the infection, but there were no more leads, except for one questionable one - a tattoo. I ended up texting that guy.
He answered very simply: “Yes, I knew, so what? You never asked. In general, I have been infected for ten years now and I live normally without pills."
For a very long time I tried to understand what a person had in his head to do this. After all, he was not a stubborn HIV dissident with his argumentation, albeit ridiculous, but still. I would even understand if it was a simple human fear of being rejected and humiliated, but this is not his story either - he was confident enough in himself. It was only about indifference and madness. Moreover, he infected several partners. Of course, I had a strong outburst of anger, I wanted the person to just die, but on the other hand, what can you think of in such a situation when everything has already happened. At that time I knew little about HIV and did not know about the criminal article for intentional infection. But now it seems to me that I would not go to court anyway. Not because I didn't want to call the person to responsibility, but simply because this is an almost unprovable moment. I don’t believe in the justice system enough to seriously believe that they will deal with a particular case and seek justice. In addition, there was no desire to listen to accusations in his address: why didn’t she think about condoms herself?
It is worth paying tribute to this man - shortly before his death, he wrote me a letter, asking for forgiveness for being infected with HIV. Reflection was really felt in the text. Probably, this was still one of the most terrible actions in his life - it was clear that for a long time he could not figure out how to apologize. By the way, he died during some scuffle with cops. That is, when I wrote the letter, I could only have a presentiment of death, but not know in any way that this was the last chance to talk.
For two years, when I did not know about the status, I had two partners - a girl and a guy (we were in a relationship with him at the time of receiving a positive test). I immediately informed both of them. The girl, we parted with her not on the best terms, laconically thanked for the warning. Six months later, she wrote that she had the final result on her hands - negative. And the then partner was very stressed about this topic, he was sure that he had become infected.I really could not console him, I had an ambivalent feeling: on the one hand, I could infect him and felt guilty, but, on the other hand, we both had to go and get tested in an amicable way before we could stop protecting ourselves. In general, our relationship did not overstep HIV. And the guy, by the way, was not infected. I’m happy that I didn’t infect anyone in the end. Apparently, it was of great importance that the viral load was minimal in the first two years.
In general, our relationship did not overstep HIV. And the guy, by the way, was not infected. I'm happy that in the end I didn't infect anyone
We met Max at a party. We continued to communicate and after a few months everything was going towards a relationship, and at that time I already knew firsthand about speedophobia, so I delayed coming out, although, of course, this did not play into the hands of anyone.
Once, right during lunch with friends in one cafe on Pokrovka, I was overwhelmed by such anxiety that I decided it was time. She went to the restroom and dialed Maxim. I remember this dialogue: “Do you have something urgent? I'm at work". “Well, no one is going to die if we postpone the conversation, it's just important to tell you something now. I have HIV. " - "I understood. I need to go now to continue working. Let's talk tonight. Don't think I'll hang up now and retreat. Naturally, I need time to somehow reflect on all this”.
Then everything developed well. Maxim said that leaving a person just because of HIV is cowardly, and cowardice is worse than living with an HIV-positive partner. The problem was different. When I found out about the status, I thought that everything connected with the word is normal, over. And for some time she led a rather destructive lifestyle. I did not take therapy, I had alcohol and drug addiction, two attempts at suicide.
True, I tried to start therapy: the pills were given at a certain viral load. There were several more CD4 cells in my body. The pills were not relied upon. I said: "Well, you know, next time I may not get enough sleep, think about something stressful, and the analysis will give the desired result." To this they replied: "Yes, but now we can do nothing." In general, then nothing happened with the treatment, and I continued to go to dubious parties.
Max was more intimidated by this. Several times we had a conversation: “I'm not running away from you because you have HIV, - I run away because you put beer in the refrigerator in the morning in the evening. What kind of normal relationship can we talk about in this situation?"
We parted and got back together several times. After the second suicide attempt, I spent a couple of weeks in a psychiatric hospital, without alcohol, on a normal diet, and adjusted my sleep pattern. I went out, realized that, in principle, you can also live like this: to sober up, go to a psychiatrist, and not try to drown out depression with substances, take ARV therapy (antiretroviral therapy. - Ed.), Eat normally, play sports, maintain a relationship with Max.
I finally went to register, went through the bureaucratic hell, began to take therapy. It was important for Maxim to see these changes - we have been in a relationship for five years and got married two years ago. Our relatives do not know about my status. I come from a small province where people live with blinkered ideas about my disease, there was no desire to surround my family with gossip. Relatives of Maxim, it seems to me, there is simply no need to talk, once again make you worry. HIV is not at all the topic with which I start talking with people. I do not deliberately tell anyone, but, of course, some in the crowd know: it was such that a friend refuses to tattoo me, and then comes and says: "Forgive me my Middle Ages, now I read everything, found out, let's get it."
Of course, to some extent I am hurt by speedophobia, but I understand that this is an inevitable moment in conditions of a low level of education of people.Sometimes they give me some kind of speedophobic statements - like, look what he said, what a horror. But I am very calm. I think you must first live with HIV or with an HIV-infected partner to be sure that you are free of AIDS, but, most likely, your psyche will present you with something that you do not expect from it at all. For example, at the beginning of my life together, I poured boiling water over the plates I ate from, refused to take a bath with Maxim. Apparently, I was so distressed by the realization that I could infect two people.
If Max had any fears, he did not show them. On the contrary, he explained to me like a child: "How do you imagine that the virus runs out of your vagina and runs up to the wounds on my body?" It was getting easier for me. Finally, the fears disappeared after a year of therapy - two analyzes showed my undetectable viral load.
Maxim said that leaving a person just because of HIV is cowardly, and cowardice is worse than living with an HIV-positive partner
It is important to note that after the opening of the status with anyone, except for the former partner, we did not break off relations. The few people in the environment who know about my HIV are educated enough to be driven away. However, I understand that if I made a public post on social networks about my diagnosis, then there might have been a lot of unpleasant things, although it might not have been. In any case, I'm not ready to check it yet.
Of course, as an HIV carrier, I encounter different stereotypes from people (in my home village the thought may slip through that HIV-positive people need a leper colony) and negative aspects in the healthcare system. For example, when you come to an AIDS center, the first thing you hear is not that everything will be fine, you can live with it normally and with proper therapy, nothing will change at all, but that there is Article 122 of the Criminal Code. Immediately after that, you must sign the record that you have been notified of your status. In which case, this paper will be used in court. I hope this is not the case for everyone, but after the first trip to the AIDS center, I left with the feeling that I was a criminal in five minutes. I studied a large number of criminal cases under Article 122 - I was amazed that it is almost never taken into account whether a person was on therapy at the time of intercourse. After all, if so, then these are completely different risks, and it becomes more difficult to talk about intentional infection. A situation may also occur that you are grabbed and held, you instinctively bite a person to free yourself, and you fall under the article. And this is also a minimal risk of infection. This is all a very controversial issue for me: on the one hand, I myself was infected by a person who was indifferent to the consequences and responsibility, and on the other hand, it was as if you were forever cross and at an increased risk of going to court. With the current level of therapy, it seems to me that this article would be wiser to cancel. The deportation of migrants with HIV also seems to me an echo of the Middle Ages, when they did not know what to do with epidemics and allowed any means, not taking into account the possibility of treating people humanely.
Now it seems to me that in everyday life there is no difference between me and Maxim. We have approximately the same state of health, the same opportunities. Although I remember one situation. We flew to Chechnya, Maxim had work to do there. Initially, it was planned for a week, but remained for a month and a half. It was saved by the fact that I always take drugs with me with a large supply. And, of course, I was terribly afraid of being examined at the airport: I did not have a doctor's certificate with me and I did not know how, if something happened, to explain the presence of so many cans of pills. I think my husband and I also have different needs to fill our heads with additional information. I am quite anxious in life, so, of course, I keep a lot of things in my head: that, leaving the house, you need to take more pills and a certificate from the doctor, that therapy may stop working and you will have to pick up another one, that there will be a strong side effect.
Although, in fact, there is a side effect in any case. For example, calcium is strongly washed out from me, which is why I am very afraid of ice, recently there was a complex fracture of an arm, cognitive functions and memory are slightly impaired. But this is all a normal price to pay for not dying.
We are planning to have a baby. I will definitely find an infectious disease specialist and a gynecologist with a successful experience in HIV-positive pregnancy. I am familiar with many stories when during childbirth the infection did not occur naturally, but I want to avoid all the risks: to give birth only by caesarean section and, of course, not to breastfeed.
At home, of course, we are not fixated on the topic of HIV, but sometimes we read something, watch something together. We share the news if we find out something interesting. Recently Max says to me: “I heard such a story about courage, I want to tell you, but there is also about HIV, I'm afraid that you are worried”. I say: "Okay already, tell me." He told me about Vasily Aleksanyan, a lawyer from Khodorkovsky's company, who was already sick with AIDS and could not be released from prison. Of course, I immediately had a panic attack.
We do not talk about HIV in a tragic way, it is closer to me to joke: I often call myself "AIDS **** com" in conversation. Maxim calls this discrimination against a huge group of people and asks not to say that. Of course, humor is self-defense, when some person who does not understand HIV calls me that, I can laugh and say: “Yes, I’m speed ***** and I know about it”.
When we just started dating Alina, a mutual friend told me that perhaps my partner had HIV. Literally a few days later, I learned about the status from Alina. Of course it took me some timeout after this information. Before I met Alina, I wasn’t completely dense in the topic of HIV, but I didn’t know a lot. I assumed that a partnership with an HIV-positive person is possible, that there are drugs that reduce viral load to a minimum, but I probably did not know all this. It took a while to study the topic.
Of course, at some point there was a question about the continuation of the relationship, it hardly happens otherwise. The first thoughts are there is danger next to you, and you can manage to get rid of this danger. Then you start to reason. There is a person you sympathize with very much. And you understand that everything is mutual with you and for the beginning of a relationship, everything is generally very good. Tell man no, simply because of his diagnosis at the moment when he, perhaps, needs your help as much as possible - this in itself is wrong. You will simply push yourself away from someone you really like, but in fact, the question is quite solvable. It is clear, not solvable in terms of getting rid of the diagnosis, but at least there is an opportunity to minimize all risks. And HIV does not mean a nightmarish family life at all. I wanted to build a relationship with Alina and wanted to maintain respect for myself.
There were, of course, phobias. As for me, so for my wife. A phobia is a very irrational thing, you can listen to professors, twenty people with similar experiences, re-read all the brochures, but this does not mean that they will immediately let you go. The phobia weakens and disappears over time, it seems to me that there is no other recipe.
On the part of Alina, there were even more fears: she was very worried if she left her razor in the bathroom and I could use it. In general, I tried to be reinsured on all sorts of such trifles.
When we started living together, Alina had not yet received therapy. There were many experiences around this. She was very afraid to start, she was afraid of side effects, I was afraid for her. It was such a stressful time. We understood that therapy would have to be started anyway. Alina made this decision and received drugs. The first two months were difficult: the body is rebuilding, this affects the emotional background. I have not the easiest memories of that period.
The first thoughts are there is danger next to you, and you can manage to get rid of this danger. Then you start to reason
I cannot say that the topic of HIV is in focus for us.It's just a fact, and outside of it, ordinary life goes on. All the important information about non-HIV life with HIV fits into one small brochure, I learned this at the beginning of the relationship. This is an interesting topic, I liked Dudya's film, but this is definitely not the information that I want to think about from morning to evening. I'm not looking specifically for books and films on the topic, if by chance I come across something interesting - I can watch it.
It seems to me that Alina and I are completely equal and equal people, I personally do not notice any difference.
Probably, there are some points related to the fact that Alina is taking therapy. But since this is just a fact that is duplicated from day to day, you don’t think about it as a difference between us.
It happens that we joke about HIV at home, but I have never heard stereotypes about HIV in our direction. Perhaps the whole point is in tactics - not to initiate once again those who are not initiated. If anyone knows, then these are the people who would not think to condemn. It is quite possible that I will get a lot of negative reaction if I tell everyone I know about Alina's HIV status, on the other hand, it would never even occur to me to do this.
In general, I do not think that HIV is the core of our relations, that we should carefully hide something or, on the contrary, tell people about it as our peculiarity, and engage in education. We just have an ordinary life, that's all. Our families and many friends, not to mention acquaintances and colleagues, do not know about Alina's HIV status. But I don’t think what we are hiding - we just don’t tell. Indeed, nobody asks me: "Are you HIV-positive, and Alina?" It doesn't seem to me that we need to engage in truthfulness and try to convey to everyone that we have such a family and we live normally, even great. Not because it is embarrassing and it will be difficult for me to respond to attacks, but because I do not think that any person will really understand all this until they encounter the topic on their own.
I do a rapid HIV test once a year, as is recommended to everyone. I do not feel excessive concern about the fact that I might get infected. If I had something similar to the acute phase after infection - then, of course, I would immediately run for the test, no questions asked. Alina is on therapy and her viral load is minimal. We do not feel any restrictions in everyday life and family life. In the coming years, Alina and I are planning to have a baby. If I have any fears about this, then they are definitely not related to conception and pregnancy with HIV. There is a lot of information, and with a careful approach, everything should go without risks.
Thank you The Voznesensky Center, which launched the educational international project "One Blood" last December, for its help in organizing the interview.
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