Personal experience

Svetlana Tsukanova - about living with HIV and raising daughters

World AIDS Day is commemorated annually on the third Sunday of May. And although the number of people living with HIV in the world is growing every year (largely due to the lack of quality prevention and the inaccessibility of therapy for more than half of patients in need), AIDS is not always about death. If you follow a number of rules and take therapy, then you can live with HIV, build relationships and give birth to children. Life around talked with Svetlana Tsukanova, the founder of the Svetoch charity foundation, the Doctors of the World program manager and the mother of two girls, about life after being diagnosed, accepting herself, pregnancy with an interval of 12 years and problems of people with HIV in Russia.

Text

Masha Shatalina

Photo

Polina Rukavichkina

Diagnosis

At 13, I ended up in the children's department of a hospital (in Naberezhnye Chelny. - Approx. ed.) with an abscess from a mosquito bite. Antibiotics were pricked there with classic glass syringes with thick needles - for disinfection they were boiled before reuse. My sister took out disposable syringes; I don’t remember why, I didn’t have enough two pieces on the last day. Of course, I told the doctors that there was no need to give an injection with a hospital syringe, but who would listen to a teenager? They did everything their own way. Three months later, an infectious disease specialist from this hospital called home - I had to be examined and tested. As a result, I found antibodies of the Australian antigen (hepatitis B). As I later found out, the entire department was infected with hepatitis B at that time. And after that, naturally, I was registered. There was no treatment: they simply said that once every six months I should take tests, and they frightened me that cirrhosis would develop sooner or later.

I’m used to the fact that I need to be regularly shown to an infectious disease specialist. About five years later - then it was the first time I had moved to Moscow to live and work - I arrived in Chelny, passed my tests, and went back. After some time, my mother called me - she said that an infectious disease specialist was looking for me: I urgently needed to retake the tests. Then I thought again: why go? I went to the nearest clinic and passed the tests there. Everything was normal. True, I still had to go. And now, not to a regular hospital, but to the AIDS center. I'm coming. They call me to the office. There is a psychologist and a doctor: "Well that's all, you are ... HIV-infected." It turned out that there are antibodies. And in my Moscow analyzes there was a mistake.

After I was informed of the diagnosis and told that I would live another seven years, I began to close myself from the world. I did not understand why this happened and why it happened with me. Nobody could clearly answer me what will happen to me, how the body will respond to the virus. The only thing that helped me a lot at that time was my friend-epidemiologist who worked at the AIDS Center: he periodically tried to get me out of this condition. He said: "The first consultation was wrong for you. We must hope that they come up with pills with which you can live long. Our task now is to reach out to these pills." I argued with him, saying that there was no point in pulling, that I would die soon.

First pregnancy

When I became pregnant for the first time, I had to prove to doctors that I, like other women living with HIV, have the right to have a healthy baby. In Tatarstan, I was the fifth woman with HIV who was about to give birth. When the doctors found out about my diagnosis, they just wrote me a referral for an abortion. And despite the fact that, subject to all the rules, the chances of having a healthy baby in a woman with HIV are 97%.

I asserted my right to be a mother, I fought not only with internal stigma - good girls from the right families do not have HIV - but also with the attitude of doctors who believed that I was either having an erratic sex life or using injecting drugs. I tried to build good relations with the doctors of the AIDS Center, who passed me from hand to hand - to trusted gynecologists and so on.


In Tatarstan, I was the fifth woman with HIV who was about to give birth. When the doctors found out about my diagnosis, they just wrote me a referral for abortion


At the time of my first pregnancy, I was not in therapy: firstly, then it simply was not available, and secondly, I did not believe in therapy, because I did not believe in illness. My pregnancy became a beacon for me: then I realized that for the sake of this child I would survive - this is like an all-in game, in spite of everything, in spite of everything. I decided that I would not die in agony, I will live a normal life and enjoy life, give birth to a daughter - and she will be healthy. And when Barbara appeared, everything, exactly at that moment, I realized that the depression was gone, that there was no death nearby. I had the task of living, earning something, opening a bank account for my daughter: I thought that I would live a little, which means I need to earn twice as much - so that she has enough for a long time when I am gone. I took a mortgage for 20 years - it was very funny when I talked about it with my gynecologist, who was in the know. With HIV, everyone survives on their own and comes up with their anchors in this life. Without them, depression and death. They ask me: "How did you live with a mortgage?" Well, the first three years are hard, and then you get used to it. The same thing with the adoption of the diagnosis - over time you get used to it simply. A man is a creature that can get used to everything at all.

Fifteen years ago, the rules for a pregnant woman with HIV were as follows: from the 25th week you need to start taking antiretroviral therapy, it is administered intravenously during childbirth (moreover, it is not necessary to do cesarean, it can be a natural birth), you should not breast-feed after giving birth, because the virus is transmitted through breast milk, plus the baby needs to be given antiretroviral syrup for three months. Then, children from mothers with HIV were registered for three years - and with the eldest, I exhaled only closer to four years when she was deregistered. Now everything is happening much faster: tests are much more sensitive, and HIV infection has been studied quite well over 15 years. But in any case, you are responsible for the health of your child: you as a mother must do everything so that your child remains healthy and is as protected as possible from HIV infection.

"AIDS Center" and "Svetoch"

Having given birth to Varvara and having lived with the diagnosis for some time, I began to realize that, in principle, no one works with women with HIV - there is only a psychologist, after two minutes of talking with whom I just don't want anything, I want to feel sorry for this psychologist. And you understand that no matter how good a psychologist may be, he will not at all be able to understand you like a person already living with HIV. So I had a desire to work at the AIDS Center.

It was, of course, insanely difficult to voice your status for the first time: this happened at a meeting of the self-help group for people living with HIV that I gathered. And I had such tremendous stress: no one knew that I had a diagnosis, everyone thought that I was just a social worker. “Hello everyone, I'm HIV-positive” - in that first group they became the most difficult words in my life.

After a year and a half, I opened the Svetoch charity fund - only HIV-positive people worked in it, they were "equal consultants." I myself continued to work as an “equal consultant” at the AIDS Center in the most difficult part - with serious patients who didn’t believe in anything: they were HIV dissidents, people who use drugs, and from prison, and those who refuse therapy, and pregnant women. My task was to explain to the expectant mother that she can give birth to a healthy child only if she starts taking therapy on time.

We also prepared women for pregnancy and worked in discordant couples (couples in which only one partner is HIV-positive. - Approx. ed.), where the husband, for example, is positive, and she is negative - so that there is no infection at conception. Once in a year more than 300 pregnant women passed through me - I monitored the process of giving birth to a baby and put them on a register to receive a breast-milk substitute. The mixture that my friends donated to the fund then stood in my office for a long time - all the women came to me. In general, in principle, judging by the patency of my office in Chelny, it was a huge flow of people - 15 consultations per day. Nobody really wants to sit in my office, although 2.5 years have already passed - everyone out of habit goes into it: someone just, someone to say hello, someone to drink tea.

Second pregnancy and talking with an elder about HIV

A few years later, I decided that one child is good, and two are better. And it turns out that again you need to solve all these issues - only now you already know where to go and with whom to talk. I planned the second pregnancy: I had to change the therapy, because the drugs that I took were incompatible with the pregnancy. Two years before Margarita’s birth, I switched to another therapy, which I still have. The scheme is the same further: the antiretroviral syrup is the youngest, only not for three months, but a month and a half, breast milk replacer, accounting for up to a year.

Now my daughters are 15 years and three years old. I tell the elder that there is HIV and sexually transmitted infections: I understand that sooner or later it will go into adulthood. My task is to prepare her to take care of herself, and if sex happens, then it will be safe. And if the guy who wants to meet her does not understand these points, then she will not meet with him. Because if he does not think about his health, then he is unstable - this is a person who will put himself at risk, as well as her.


In any case, you are responsible for the health of your child: you as a mother must do everything so that your child remains healthy and is as much as possible protected from HIV transmission


I think that these commonplace things should be uttered by absolutely all parents. Yes, there are cool programs for students from different foundations, but parents are always responsible for children's health. True, my parents once wrote a statement to the prosecutor’s office for the fact that their teenage son took a condom and a newspaper from the AIDS Center on the street. Situation: a child came taller than me, he looked about 17-18 years old, took a newspaper and a condom, read articles and then went to the teacher: "Tell me more about this - I want to know more." The teacher, of course, called her parents. And they came to the AIDS Center and threw this newspaper in my face: “You are corrupting young people, promoting sexual relations.” I remember that I told them then: "This is a very good indicator that your child generally approached you with these questions, and not somewhere on the street talking with peers about this. And you missed such a chance to talk with him."

Adoption

I accepted myself, fell in love with myself, but so far, having traveled the path of 18 years, I know that this is difficult for me. Yes, I have reached a certain level of comfort, learned how to live with HIV, I do what I love and believe that my career is successful, yes, I have something to be proud of in my life. There are people who still work on the platform I created and have the opportunity to work in this project. I enjoy my work, but there is always a day when you begin to think about how you feel. Or how I felt before. Maybe everything in my life I just got out of spite or from some kind of internal injustice - so that uninfected people would not discriminate against me. Because of my inner stigma, I needed to understand myself that I was the best.

Probably, at first I wanted to prove to myself that I can. But once I realized that I do not care about the opinions of others. HIV-positive does not prove anything to anyone, he does not care what others think. Because in the first phase of making a diagnosis, we hate people: because it happened to you. This is the phase that any HIV-positive person lives in. During this period, he moves away from society - some close, some vice versa - and changes greatly. Because he ceases to trust people. For example, I was afraid to trust people, because I was afraid that they would use my status against me. And they tried to manipulate: I know, I will tell. Why, after ten years, constantly living in fear that someone would find out, God forbid, I created a mutual assistance group and opened a fund? Because by doing this, I knocked out this tool for manipulation among many.

Problems of HIV Patients in Russia

The funny thing is that the purpose for which a community of people living with HIV was created is to teach people to maintain their health. That is, people having lived for some time with HIV begin to understand how difficult this process is. Yes, you can live with it, yes, now it is a chronic disease - and, thank God, we can smile and enjoy life, give birth to children, start a family - because we can live a full life on antiretroviral therapy, like ordinary people. Provided that this therapy suits you and you take it.

Therapy should be taken for life, antiretroviral therapy becomes like oxygen for you. And here you constantly need to work on making your diagnosis. Until you realize that you are HIV-positive to the end, you will make a lot of mistakes: you will think that you do not need to take therapy, because you already feel good, you will be negligent about going to the doctors and giving up analyzes. Unfortunately, HIV infection is not always so pronounced: you can feel great for years and not even notice that something is happening in your body.


Maybe everything in my life I just got out of spite or from some kind of injustice - so that people who are not infected do not discriminate against me


Of course, there are certain inconveniences: you must be sure to attach yourself to the dispensary register in order to receive medicines. True, if you want to move to another region, then this is a whole problem: you have to break away in one center and register in another region and attach to the center already there. In Moscow, this is a disaster: when I moved from Naberezhnye Chelny, I, as an in-country migrant, had to go through all this. We, people living with HIV, teamed up, wrote a letter to the government and the Ministry of Health to explain to us how to get therapy, and developed an algorithm for registering at the place of residence. I don’t understand why my life, because I am HIV-positive, should not be comfortable? Why is that obscure register that should have been filled in and started working in 2017, still not working and not functioning? Why so far, in 2018, regional AIDS centers do not know how to interact with each other so that funding and drugs go from region to region after the person. And this is difficult for everyone.

There is another mechanism that needs to be worked out: in Russia, antiretroviral therapy is prescribed only at a certain level of CD cells. That is, the diagnosis was announced to you - you have the first stress. Then your immunity has fallen, you are prescribed antiretroviral therapy - and the second time you experience stress about your diagnosis. Because no matter how trained a person is, he at this moment understands that everything is bad with him and now he must learn to take therapy. And this is the whole process. A person must be aware that he must drink the pills by the hour, that it is like air - how to breathe, that you should not be negligent in this process. Because the observance of these rules depends on whether you will be dangerous to society, whether you will harm your child whom you are trying to give birth.

Watch the video: 20190802 181943 (November 2019).

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