“We decided not to die, but to marry!”: How a woman with HIV lives happily in marriage, raises two children and helps others

I have been living with HIV for 18 years, and all these years I have been daily faced with condemnation from others. But what can we say about society, when even doctors sometimes behave rudely and unprofessionally. Last year I was urgently hospitalized in the ENT clinic with sinusitis. I went to the doctor, took the line and had to go third. At some point, the doctor came out into the corridor, gave my name and said: “And you will come in the very last one.” I was surprised: “Why on earth? I took the queue. ” He replied, “You know why.”

I did not give up and said that I would come in one by one – as I had borrowed. And she went. Every time in such situations I try to seek justice, at the same time realizing that not everyone can fight for their rights day in and day out like this. 

Expelled

In my opinion, it is too early to say that our society is well aware of the nuances of HIV infection. This topic concerns everyone, but many do not think so. First, because HIV is considered a shameful disease that affects only people with an asocial lifestyle. Secondly, our Russian maybe – they say, it will carry, it will not affect me, so why think about it? And this is the main problem.

As I said, the attitude of doctors aggravates the situation. Such stories are sometimes shared with me … For example, one mother with HIV infection brought her healthy child for a massage, and the doctor put on two pairs of gloves for this. A nurse I knew was undergoing retraining, where they were given information that they were dying of HIV. Medical volunteers also shared with us how, during their training practice at the hospital, they were told: “Don’t go to that ward.” An ambulance travels to HIV-infected people for a very long time or, as a rule, does not come at all.

That is why people often withdraw into themselves, do not talk about their diagnosis, otherwise they have to constantly face condemnation and shame.

One woman with HIV told how she came to see a mammologist, and when he saw the diagnosis on the card, he ran out of the office and started shouting to the entire corridor: “I won’t accept you!”. It was in a small area, for sure there were neighbors and acquaintances around.

All this suggests that it is necessary to train health workers differently – in the language of today’s science. To inform that people with human immunodeficiency virus do not die and during therapy they are not dangerous to others. They are the same as everyone else.

Back to 2002

When I remember that time, tears well up. The first thing that comes to mind is a huge sense of shame …

I come from a small village in the Chuvash Republic, after leaving school I moved to Cheboksary, entered the university at the Faculty of Economics, and met a guy.

It was love, absolute trust.

Everything is serious: he introduced me to my parents, we planned to get married. As a result, at some point, they stopped protecting themselves. But one day he simply disappeared: I called for a long time, looked for it – and nothing. I thought: “I’ll need it – I’ll come back,” and suddenly I decided to devote the free time to health, to pass some tests.

So, on the eve of March 8, I was informed that I had HIV. I spent the holiday alone with this verdict.

She wrote in her diary: “Everything collapsed, there are no more goals. Nothing in the world. Everything has disappeared. ” 

Of course, I didn’t want to believe in the diagnosis, it seemed to me that it was a mistake. I took the test several times, in different clinics. Alas, in each of them the diagnosis was confirmed, but the worst thing is that doctors from time to time tried to condemn. I remember how these people in white coats ran into the office and with bulging eyes began to shout at me: “Who were you with ?! Who are you injecting with? ” I was so scared that I just sat there and cried. Then she asked: “How long do I have to live?” They replied: “Perhaps eight years.” I remembered these words for the rest of my life.

There is no future

At that time, I lived with my younger sister and her friend and was terribly afraid that I could infect them. First of all, she insisted that the girls be tested, and when she found out that they were healthy, she began to think about her own death. I decided that I would never be able to tell anyone about this, and it would be better without me – this is such a shame for the whole family.

My sister then withstood all my tantrums. I didn’t get out of bed. I remember screaming that I don’t want to live, how bad I am.

The sister was just silently there. It took about six months before I forced myself to do something. I had a kind of bargaining with God: “Maybe I misbehaved? I will become even better, I will go to all the temples, to the holy springs. Just heal me. ” And I really traveled to many holy places in search of a way to escape HIV.

It sounds silly, but then I had practically no information: doctors only condemned, did not offer treatment, and the Internet was not yet so developed. And then, in parallel with my studies and work, I began to come to the AIDS Center.

I worked as a hairdresser for two days, spent two days in the corridors of the AIDS center: I was looking for the same frightened eyes as mine, and I approached the girls in tears. I say to one: “Hello, my name is Sveta, I have HIV. Let’s talk?”. To which her answer sounded: “Do you know that all of us can be shot?”

Just imagine how strong the stigma was inside people! Every HIV-positive person thought that from now on he was an outcast, an inferior member of society.

And I am no exception. Dealing with everything alone was incredibly difficult. I was supported only by one doctor – Margarita Semyonovna. She listened to me, looked with such an understanding parental look, answered all my stupid questions. She also handed me the first magazines “Steps”, which I rewrote from cover to cover, underlined all the unknown words, then returned to her and asked what they mean. 

The magazines published stories of real people living with HIV. I still remember some of them by heart. Their experience gave me hope, helped me see the light and believe that I would survive. That is why today I try to actively maintain Instagram and show by my example that it is possible to live a full life with HIV. Yes, not everyone is ready to accept us, but there are more good, kind people.

The tipping point

In the summer of 2004, Margarita Semyonovna recommended that I go to Moscow to a forum dedicated to HIV and AIDS. We rode together with another girl and seriously discussed that perhaps they all want to gather in one place in order to burn. The fear was so deep. But it was with this forum that everything changed. I thought (and the doctors confirmed) that I would no longer become a mother, I would not build a full-fledged family. There was so much horror inside about this …

And there, on the forum, I saw a pregnant woman with HIV! I also made sure that I am not dying, that people with HIV live!

It’s time to tell my family about my status. Soon after the forum, I visited my mother in the village, brought magazines about HIV with me, showed people’s stories, and then confessed that I was also one of them. Mom cried a lot: I saw in her eyes the fear of condemnation, public shame. The village is small.

And so it happened: there were rumors. As a hairdresser, I cut my hair very well, so the whole village was waiting for me, and we arranged a spontaneous beauty salon right in the club. Once I, as usual, put everyone’s hairstyles in order, and then a girl ran in the door with the words: “You know: a woman with HIV born in 1981 appeared in our village!” The scissors almost fell out of my hands. It was about me. 

Fear in the face

In the same 2004, acquaintances activists invited me to Orenburg to the Volga forum. Then, after looking at others, listening to how much they were doing, I decided that I also wanted to help and did not want to be silent anymore, although it was still very scary.

One of the activists named Serge spied on the Miss Positive beauty pageant among HIV-positive girls in Africa and decided to arrange one in Russia so that we would have our own leaders. It was a closed competition: there, on the forum, we were photographed, published on the website, and voting took place only among the HIV-positive community. In November I was told that I won.

Then Gennady Onishchenko made a statement that such a competition had been held for the first time in Russia, and everyone began to look for the winner.

They came to me quickly. Fortunately, there were literate people nearby – they helped in working with journalists, who should be interviewed and who shouldn’t. I communicated on condition of anonymity. For one of the newspapers I was even photographed, but in the press they covered my face with a square, and still in my native village I was easily recognized – by my hair and clothes. I denied it, claiming that it was not me, but that everything was shrinking inside myself. 

In December 2005, Andrey Malakhov called me, invited to his program – with an open face. I was afraid, did not know what to do and decided to consult with one activist who was an authority for me. He said that we must go without fail, because it is important to talk about our problems.

So, the whole country became aware that I, Svetlana Izambayeva, am sick with HIV.

After that, it was very scary to return to the village … They also recognized me in the city, but I did not meet any rejection. Rather, surprise. However, the employers demanded an HIV certificate from my siblings, and my friend, with whom I rented an apartment at that time, said that she would no longer live with me. Since then, I warned all my acquaintances who invited me to visit and asked them to think a hundred times. Once in connection with this there was a big scandal: my friend’s dad saw me on TV and started shouting: “How can you be friends with her ?!”.

The right to love

I began to live an active life, worked a lot, communicated with different people. At some point, I noticed that the negative men I know show interest in me, knowing that I have HIV. Nevertheless, I still kept my distance: perhaps because one day the boyfriend said that he did not understand me, meaning my activity and desire to help everyone. I suddenly realized that it would be difficult for a person without HIV to understand me. I lived by my own business: everything inside was so painful that I wanted to shout, tell, convey that we are ordinary people.

I met my future spouse, also HIV-positive, at a support group on March 1, 2006.

I remember how he sat and looked at me. We somehow immediately liked each other, we could not stop talking. The only thing, then he said that he would never speak publicly about his diagnosis, to which I replied: “What a coward you are!” A couple of weeks later, he called and said that he would be shown on Channel One. He took my words as a challenge, which amazed me. 

We lived in different cities and met only three times – at trainings. And then they decided to get married. More precisely, the husband decided, and I was a coward. He offered to live together, move to Moscow, and I was scared to leave my mother, brothers, sister. After the death of my father in 2004, I moved my family to the city and slowly restored my mother: my father suffered from alcoholism, and then became addicted to the bottle and my mother.

Despite this, my future husband did not give up and decided to take it by cunning. One TV company filmed a story about people living with HIV and tried to find me through it. Then he offered to shoot a story about our wedding, and here I already gave up. We got married on June 15, 2006 – three months after we met.

There were a lot of journalists: why, HIV-infected people decided not to die, but to get married! Blimey!

Even my husband’s mother sincerely did not understand why we needed a wedding, she suggested that he rewrite the apartment to his nephews – they say, she will die soon anyway. My relatives did not come to the wedding at all. A cousin said: “We have children, you understand.” This attitude further spurred us to broadcast that we do not plan to die, we are ordinary people.

At the wedding, journalists interviewed my mother. I watched her talk and this time I saw the pride in her eyes. 

Tablets daily. All life

There was no treatment for a long time, as I said. The doctors practically did not explain anything, they did not offer therapy. And I tried to heal myself. They sent me holy waters, a lot of charlatans offered their services. I understood that immunity suffers most of all: it means that it is necessary to raise it. Once, in a conversation with a friend, I found out that ginseng root helps a lot with this, and since then I began to eat a spoonful of tincture a day. 

Naturally, I had no idea that no immunostimulants should be taken, and only exacerbated the situation: the cells fell very quickly (for people with HIV, the number of CD4 cells is important, which are responsible for recognizing pathogenic bacteria, viruses and fungi that must be destroyed by the immune system. Normally, they should be from 500 to 1200 cells / ml. Below 200 – already AIDS, – approx. Woman .ru)… As a result, candida and papillomas appeared on the skin all over the body. Very scary – there were so many of them! With this, I went to our AIDS center, showed it to the skin venereologist, and he simply burned everything with super cleanliness, which was absolutely impossible to do. I should have been prescribed therapy, but now I go with minor burns all over my body.

Candida was replaced by shingles. It was already the stage of AIDS: the cell level dropped below 180.

It was then that I was prescribed therapy for the first time. It was terribly scary to start taking pills: I understood that this was a lifelong treatment, and … I put them in the closet.

My husband and I moved to Moscow, and soon I became pregnant – we dreamed of becoming parents. I transferred to the Moscow AIDS Center and registered for pregnancy at 16 weeks. Now I have already been prescribed therapy based on my situation.

Since then, for 14 years now, I have been taking medications every day.

By the way, the first pills (I eventually returned them) were contraindicated for expectant mothers, so everything turned out well.

Now the situation with therapy and its availability is improving. There are various schemes of admission that the doctor selects specifically for the patient. The main thing is not to quit treatment.

Mom with HIV

During my first pregnancy, every night I dreamed that I was giving birth to HIV-infected children. I knew it was impossible, and I was still terribly afraid.

Science has made great strides forward. Subject to therapy (daily pills), HIV-infected people are not dangerous for sexual partners and others in general, and women give birth to healthy children. In addition to therapy, in this case, an important condition is the refusal of breastfeeding (the baby can become infected through the mother’s milk).

I went to church and prayed, talked a lot with my husband – he supported me.

In March 2007, our firstborn was born – daughter Eva-Maria. And two years later I gave birth to a son, Adam.

They are both healthy. There are hundreds of such happy stories around me, and these are wonderful families!

Fortunately, today HIV-infected people can become parents in different ways: now they have access not only to IVF, but also to adoption. And in this place I smile a lot, remembering how I had to fight for this right.

In 2009, the mother of our heroine, who had five children, died. Senior 28-year-old Svetlana, 19-year-old Nadezhda and 18-year-old Alexei were already independent, but 9-year-old Alexander and 5-year-old Andrei, suffering from cerebral palsy, were sent to orphanages. Svetlana tried to arrange custody of her brothers, but according to the law of the Russian Federation, she was forbidden to do this, because she is HIV-infected. Only a year later, after going through eight trials, Izambayeva proved that her brothers would be better off with her than in foster families or an orphanage. Fortunately, things are different today: in May 2019, Vladimir Putin signed a law allowing Russians with HIV and hepatitis C to adopt children.

Motherhood of an HIV-positive woman is no different from normal motherhood. For us – but not for others.

So, one day our neighbors burned my baby’s stroller. I tried not to think about why they did it, otherwise my legs would give way and my whole body would get cold. It’s very scary!

Also, my daughter was kicked out of kindergarten when they found out that her mother had HIV. I was crushed: I just lay there for a week, we both immediately fell ill. Soon I went to the forum, where in a conversation I shared my pain with friends. They are journalists, so this story soon got publicity – right up to the air at Malakhov’s. It happened by chance, but I’m glad that people paid attention to this problem, because everything that concerns your children is perceived very painfully.

Our daughter went to the camp last year, from where she soon wrote that she was ill and was in isolation. I, of course, was terribly scared, I thought that the counselors got rid of her in this way. And they really began to write to me: “Your daughter scared the children.” It turned out that she shared that her mom and dad are sick with HIV, they work and actively help others. Then I asked: “Are you sure that she scared the children, and not the adults?” As practice shows, children are not at all afraid of HIV. But adults have a lot of prejudices.

mission Possible

After I publicly spoke about my HIV status, I began to receive hundreds of letters from various countries. My husband saw how much time and energy I spend on responding, supporting, and giving advice. And he offered to open his own fund. I listened to him, realizing that this was the right thing to do. Moreover, I knew that I would continue to help people, because there was no other way I could. This is how the Svetlana Izambayeva Foundation appeared. For a long time I resisted calling him by my name, but my husband convinced me that it was important. My version was “Mother and Child”, since I wanted to throw my main forces to help mothers.

I gathered support groups in my one-room apartment.

Then grandmothers began to come with grandchildren with HIV (the child’s parents died or were not able to take care of him), and so another group of people in need of help opened up to me – teenagers, of whom there are more than 13 thousand in Russia. I recognized myself in them: I myself grew up in a family with alcohol addiction, I understood their pain.

We recently conducted a study about the lives of HIV-positive adolescents. It’s incredible. Earlier in my reports, I relied only on my experience, and now we have a study that officially proves each of my hypotheses. Now we have raised a huge layer of problems that need to be addressed.

Adolescents are very closed: they do not have as many opportunities as an adult to find help, and they withdraw into themselves. The family of such a child often refuses, avoids questions: there are mixed feelings of guilt, fear, and shame.

There are very, very few parents who conduct a dialogue with a child and honestly tell what HIV is, where it came from.

Children are looking for answers on their own – on the Internet, where after reading a lot of different things, they often stop taking pills: supposedly they will not live long anyway. It is very important for us to form adherence to therapy (adherence to doctor’s prescriptions for taking medications), since this is the key to their health and their future.

Many children find it difficult to take a large number of bitter drugs, which is why parents constantly monitor this part of their life. Almost everyone notes that they would like to take no more than one pill a day, and better – even less often. This would make life much easier for both children and parents.

The guys dream of a miracle pill or vaccine that will save them from therapy forever.

Depression is inherent in children who are left alone with HIV: they don’t even have anyone to talk to! But not because they have no friends: social stigma is already playing a role here. Children tell how they have to constantly make excuses that they are not drug addicts, they were already born with HIV.

Unfortunately, visiting medical facilities often turns into a whole ordeal: the awareness of the disease, and especially of the methods of HIV transmission, is not everywhere high. I hear stories like this all the time. Our research has confirmed that people with HIV are most worried about not the diagnosis itself, but the attitude of society towards it.

If pediatricians are afraid to visit children with HIV, can you imagine how they will be treated when they find out about the diagnosis at school? And this fear of not being accepted accompanies people all their lives: at school, at work, in hospitals – everywhere.

This has a negative effect on adherence to therapy – HIV requires taking drugs from one to several times a day (depending on the treatment regimen). Patients are afraid that their environment can see, ask why these drugs, finally find a name on the Internet, and miss an appointment … 

For them, HIV is a stigma. And today we must do everything possible so that such stereotypes and fears do not poison the lives of these children. They are not to blame. Our research shows just how badly this attitude affects the child and how important it is to have competent specialists in special institutions, to create anonymous communities, support groups for adolescents and their families.

For example, the children with whom we regularly work, organize rallies – they are more open, free and responsible. They share their status with friends and are surprised to find that no one rejects them. I cry softly when I see stories like this.

Having opened the foundation, I almost immediately went to study as a psychologist – I graduated from the Department of Clinical Psychology. Now I am completing a gestalt and will soon receive a supervisor’s diploma in order to be able to train other psychologists, since an equally important task of our foundation is to create programs for specialists working with HIV-infected people. We want people to receive truthful knowledge.

Previously, there was no reliable open information about the disease, I had to take the doctors’ word for it (for example, when I was measured only 8 years of life). I’m grateful that things are not right now.

Today, patient organizations, psychologists and companies that are not indifferent to people with HIV are of great help. I would also like to note that for today the main mode of HIV transmission is heterosexual intercourse… This problem affects women, as often, due to emotional weakness, they cannot say “no”, they are embarrassed to offer to use a condom and do not defend their desire for protected contact. There are many problems and gaps in knowledge, and this requires modern solutions.

Today, having lived side by side with HIV for 18 years, having gone through the stages of shock, rejection, shame and guilt, I finally realized that everything is not without reason. What happened was no coincidence, it had to happen.

I see this as my mission. The mission is to teach people with HIV to live a full life, to be more responsible, to consciously treat not only physical, but also psychological health.

Every day we commit violence against ourselves – we keep everything inside, hide our illness, endure humiliation, try to be pleasing. And it is important to be yourself – the way you are. This is the most important thing that I have endured for myself living with HIV.

 Photo Shoot: personal archive of the heroine