"You will die yourself, he will die a painful death": how to raise a child with HIV in Russia

The HIV situation in Russia can be called an epidemic. Back in 2019, the millionth patient was registered who was diagnosed with HIV. In reality, the number of carriers of the virus can be much higher. Our heroine told how she lives with HIV and how she raises a child with the same diagnosis.

Russia is one of the five countries with the fastest spread of HIV, and it ranks first among European countries. According to data for 2020, the number of infected Russians has practically reached one and a half million, the number of cases continues to grow.

It is generally accepted that HIV is a disease of the lower social strata, spreading exclusively among the marginalized, leading an asocial lifestyle, mainly drug addicts. Statistical data indicate that this is not entirely true: in 2020, 31% of patients contracted HIV through drug use, and almost 65% of infections were associated with heterosexual contacts.

As doctors learn more about the disease, antiretroviral therapy is becoming more affordable, and HIV is often described as a chronic disease that can be controlled, myths about the disease continue to circulate, and its stigmatization remains a serious problem.

Where did HIV come from?

I am 38 years old. I have two children: the eldest is 17, the youngest is 8. In 2004, when my child was born, I found out that I had HIV. I was breastfeeding my baby and during pregnancy all tests were negative.

It is absolutely unclear where and how the infection could have occurred. Until 2001, I had an experience of drug use, and accordingly, there could not be a “window” (the initial period after infection, when the virus is not yet detected by standard tests. - Ed. Note). It could not be 3 years long. My first husband was HIV-negative for sure, then he was my only man. In addition, 2 HIV tests showed negative results during pregnancy. Where he came from is not clear.

It was very difficult to accept the diagnosis. Most of all I was afraid for the child: I was told that I would live 5 years and die, and therefore, having learned that my child still has HIV, it was difficult for me to realize that he would die at such an early age. I tried not to think about it at all.

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To speak or to be silent?

My mother, brother, friends, husband knew about our diagnosis (he was then examined and it turned out that he had a negative result). In fact, due to the disclosure of the diagnosis in medical institutions, more people may know.

My mom reacted very hard to this. What was HIV in our understanding at the time? It was AIDS, and "if I have AIDS, then I will die." I even sang that song of Zemfira (the song "AIDS" - Ed.). For me at that time HIV was equal to AIDS, I thought that I would die. Then I realized that I was not dying, although 7 years had passed. I started therapy only 10 years after the virus was discovered (my son was 11 years old). I already knew then that HIV is not the same as AIDS.

HIV is said to be a grateful chronic disease that we can control. There are many viruses that are very difficult to control. HIV is more flexible in this regard. These are the words of our head physician, I keep them to myself now, I really like them. I tell this to people who have just learned about their diagnosis.

I have a neighbor who still does not know about my status, but I work with her, carry out stigmatization prevention. In principle, I do not hide my diagnosis, but I also don’t tell everyone that I have HIV. In our city, I am an HIV activist, the disease has turned into a professional activity.

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I do not divulge my son's diagnosis, this is his own business. He has already told his friends, so almost everyone in his environment knows. He is very advanced in the topic of HIV, he consults adolescents. Probably, I went to the activists first of all because of him. I created a safe atmosphere around my child, it was important for me that he accepts himself as he is. When parents reflect their fears in their children, not very good things happen to those children.

How is HIV treated?

I want to live happily ever after, so I try to take a responsible approach to my health. Sometimes I experiment - I try different diets, for example vegetarianism. I am studying information about nutrition. Basically, I feel good.

My son is doing well too. He began therapy at the age of 11. It used to be like this: therapy from birth, as now, was not prescribed, because it simply did not exist. Currently, we only drink a pill a day, it suits us well. All the components of therapy are already included in it, you will not get confused in the jars, so we are lucky. Many are prescribed several pills that need to be drunk twice a day - it is difficult to maintain such a regime all their lives, and even remember to take medications. And for the drugs to work, it is important to drink them without missing a beat.

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We did not have any difficulties in registering. Thank God, there were no problems with drugs in our city either - I personally did not come across them. There were some separate schemes, but never for those drugs that I drink. The state provides all of us with tests too. There were interruptions due to COVID, of course, but now everything is taken as expected. Considering that I know my rights and the rights of my child very well, they don't even argue with me, for me there is always everything.

How did the diagnosis change your life?

Initially, I had fear, because I closed in myself, I had a difficult time with my son. I did not send him to kindergarten, because there was a disclosure of the diagnosis by the medical staff, and then stigma and discrimination.

When passing the medical examination, we were faced with the incorrect behavior of the medical staff. They literally put on spacesuits, said not to enter the office until other people had passed. Of course, I did not have any strength and enthusiasm to go through some kind of examination with the child once again. I was very scared.

Over time, due to my character, I began to study this topic in more detail, my rights. When we register, we are given only one piece of paper, which says about criminal liability under Article 122. And the fact that we have some other rights, no one says. When I began to study all this, it became easier for me to live. I know my rights, I will defend them for myself and my child. Perhaps, if I didn’t have a child with HIV, I would not have such confidence. First of all, I protected him.

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HIV stigma still remains

I have faced stigma in healthcare facilities. They said to me: "the child will die," "she gave birth to a suicide bomber," "you yourself will die, and he will die a painful death." When the son was in the hospital in the children's department (his son had enlarged lymph nodes), there the cook could shout to the whole dining room “what came with her HIV infection”. But this was not the case with my son at school. I personally carried out stigmatization prevention in his class. We agreed with the class teacher: during the classroom hour, I introduced children to various diseases, including HIV, and told how people live with this diagnosis. My son, thank God, did not face a bad attitude towards himself. I was very afraid and worried when I found out what he told his friends. But children and adolescents are often more adequate than adults, they accept HIV-infected people, they understand everything.

Children often think that HIV is something like an acute respiratory disease, then they are turned on - and then they begin to associate the virus with drug addicts, etc. With adolescents, in any case, it is easier, they do not have the same hostility as adults, they are more open to information. Adults are often more pleased to be in their own world of myth and speculation.

To hide - I do not hide it, but I do not publicly disclose the diagnosis. My youngest daughter was injured during childbirth and in part I associate this with stigmatization. Women with HIV are given IVs during childbirth, the nurses did so, pierced the bladder and immediately left to drink tea, and I immediately began labor activity. There was no one on this floor. I just kept the child to myself. It so happened that the child has hypoxia and, as a result, cerebral palsy. Today she goes to a regular school, if you can guess a little from her gait.

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I am a very active mother among children with disabilities, because it is important for me to know where what kind of rehabilitation is done, what specialists come. We go to the pool. Mothers of children with disabilities are very anxious, and I understand that when disclosing my diagnosis, unfortunately, I can deprive my child of many activities - solely because we are simply not allowed there. This is my fear, I still live with it. So far, I cannot openly talk about our diagnosis, but if they ask, I do not hide it. And, of course, I discuss HIV on my VKontakte page: I write, I introduce people to this topic, many unsubscribe from me after such posts. I also lead a self-help group in our city and I see how important this work is, I educate people who think that this will not affect them. I tell them about the risks, opportunities.

What should everyone know about HIV?

Today the topic of HIV has become my job, I help people. I work with people who are raising children with HIV, because I know all the difficulties that I have to face every day. I talk about their rights because I myself was once mistaken because of my fear, somewhere I deprived my son of the opportunity to realize himself in society. One of the areas of my work today is families raising children with HIV.

You need to know that HIV is not transmitted by household means. You must always protect yourself during sexual intercourse so as not to get it. To be constantly tested and know about your HIV status.

You also need to know that HIV is not a sentence, you can live with it. Today, there are enough drugs that you can take. Now the dosages are not as high as they used to be. In addition, we see movement - new drugs are created every year. If earlier everyone drank mountains of pills several times a day, now they are gradually beginning to prescribe more humane in terms of convenience schemes - one pill a day.

You can live with HIV, give birth to healthy children, you can live with a negative partner, but you don't need to run into these ranks. We need to do everything to avoid HIV infection, but at the same time not be afraid of HIV-infected people.

If your HIV status is confirmed, life doesn't end there. I usually tell my clients that perhaps today their new life began. Then I see how they develop, achieve what they wanted and put off. They begin to live here, today and now. In reality, their lives are changing - and that's great.