Address of the AIDS Center: Kaliningrad, st. Zhelyabova, 6/8. Helpline 957-957.
Help "SK"HIV infection is a slowly progressive disease caused by the human immunodeficiency virus (HIV). The virus infects cells of the immune system. As a result, her work is suppressed, and acquired immune deficiency syndrome (AIDS) develops. This means that the patient’s body loses the ability to protect itself from infections and tumors. Diseases occur that are not typical for people with normal immune status. Without treatment, these diseases cause death on average 9–11 years after infection. The average life expectancy during the AIDS stage is about nine months. With timely HIV treatment, life expectancy can be significantly extended.
Routes of infection
- Sexual contacts without a condom (both homosexual and heterosexual).
- Through blood - during medical and other procedures (most often when using drugs).
- From mother to child during pregnancy, childbirth and breastfeeding.
- Important (!): no infection occurs either from a handshake, or in the pool, or from a mosquito bite. When kissing, too, with an exception: if those kissing at the same time have bleeding wounds in the mouth.
Every year the global situation with HIV infection is only getting worse. And there are often families where both spouses or one of them are infected. The husband and wife may know about this in advance, or they may become infected while already married.
The principles of living together with an HIV-infected person, building a full-fledged family with him and organizing everyday life have their own specifics.
When a person finds out that he is HIV-positive, he needs the support of loved ones. The main person providing assistance to the patient is most often his spouse - husband or wife. A healthy person living in the same apartment with an HIV-infected person needs to remember that the immunodeficiency virus is not transmitted through household contact.
Thus, you cannot become infected through:
- handshakes;
- embrace;
- conversations;
- using only household items.
All this is safe for a healthy spouse, provided there is no contact of his damaged skin with contaminated biological fluids: blood, semen, vaginal secretions. Therefore, answering the question whether an infected person in a family is dangerous, we can answer with certainty: no, when all the rules of living together are followed.
For a patient with such a serious illness, it is important to feel the support and support of a loved one, to know that he was not abandoned in trouble.
Planning pregnancy with HIV in partners
Sooner or later, a husband and wife come to a decision about conceiving and having a child. And the question immediately arises: is it possible with an infected spouse? There is a lot of information on this topic. However, each case requires an individual approach.
Healthy children are born in such families, whose parents took a responsible approach to conception and followed all the instructions and recommendations of doctors.
You can live your whole life with an infected person, love him, have children from him and not become infected with HIV. The only thing worth remembering every day is that sexual contact with your spouse’s genitals should always be as protected as possible. To do this, you must use a condom every time you have coitus.
How to live with an HIV-infected husband?
Undoubtedly, women who find out about their husband’s illness need time to come to terms with this fact. Over time, love for a spouse develops into a desire to have a child from him. How does one conceive children when the husband’s HIV status is positive and the wife’s HIV status is negative?
Here are the possible options for a normal pregnancy:
- Sperm purification, i.e. separation of sperm from seminal fluid. In this case, only active sperm that do not contain HIV are used for fertilization (retroviruses are found in the liquid part of the sperm and in inactive germ cells). Sperm replanting is carried out in the middle of the menstrual cycle, and at the same time they do not infect either the woman or the unborn child.
- Donor material. If it is not possible to carry out the first method of fertilization, doctors recommend using donor sperm. Unfortunately, not all men agree to this method.
- Antiretroviral therapy. If the husband undergoes a course of treatment before planning to conceive a baby, this will give him the opportunity to conceive a child naturally. In this case, the likelihood of infecting the wife through contact with blood and sperm is minimized by reducing the viral load.
If an infected man wishes to have children as part of conception planning.
The wife is HIV positive, but the husband is not
In cases where the wife has and the husband is healthy, it is necessary to choose other methods for conceiving a child. These include:
- In vitro fertilization (IVF). This method of conception can only be carried out in a hospital setting. To do this, a mature egg is collected from the wife, and his sperm is collected from the husband. In this case, direct fertilization occurs when the germ cells are outside the female body - in a test tube. After this, a number of embryos are implanted into the wife’s uterine cavity.
- Artificial insemination. This method is characterized by the collection of sperm from a healthy man, which is injected into the woman’s reproductive organs in a hospital using a special catheter. This process is carried out during the period of expected ovulation in the wife. After this, conception and attachment of the embryo in the uterine cavity are monitored.
- Physiological conception during the use of antiretroviral therapy.
Thus, modern medicine offers several methods for conceiving a healthy child in couples where one of the spouses is infected with the immunodeficiency virus. Things are a little worse for couples where both spouses are sick. In this case, the baby becomes infected in almost 100% of cases. However, this problem also has its solution. Infected people who want to become parents must scrupulously follow the recommendations of doctors.
Last July, Elena Bayalinova, a consultant at the press center of the Ministry of Health, shared her story with us. After the death of her husband, the woman was forced to move to Bishkek with her children. Now her youngest child has also been diagnosed with HIV. A woman is not hired, and now she cannot work at home. The family literally has nothing to eat.
“I never intended to leave the village where I moved when I got married. I lived there for 13 years. I got along with everyone,” says Aigul.
However, then Aigul’s husband died. The woman couldn't understand why. But after his death, doctors came to her and said that the man had AIDS. Aigul was sent for tests.
“In search of support, I told my husband’s relatives that I had HIV. I always had a good relationship with them. I trusted them,” recalls Aigul.
However, the villagers knew nothing about this disease. They didn't understand how it was transmitted. Therefore, relatives began to eat separately from her and her children. They did not touch those household items that the woman and her sons used. In addition, they did not understand the difference between AIDS and HIV.
“They began to accuse me of having infected my husband and because of me he died. They not only separated me from home, but also told everyone they knew about my illness, and our village is small. Instantly everyone found out about that I was sick. It got to the point that people didn’t greet me and avoided me in every possible way. It was a shame from this, but I had nowhere to go, so I endured these humiliations. My parents died a long time ago. And my relatives live in Tajikistan,” says woman.
When other children stopped playing with my children, when my children began to be separated and humiliated, I could not stand it and left for Bishkek so that no one knew about my illness and could not reproach my children. I also hoped to recover in the capital.
Aigul told the taxi driver that she had nowhere to go in Bishkek. He took her to some address where homeless people live. She turned to shelters, but the woman was kicked out from everywhere as soon as they learned about her diagnosis. Then Aigul received help from the National Red Crescent Society. They rented her an apartment and gave her the necessary things. Aigul got her children into school and started working part-time.
“I can’t get a permanent job: when employers find out that I’m HIV-positive, they immediately turn me down. I worked part-time at home. Now I can’t even do that, because my youngest son is sick and doesn’t go to school. The children also got tested, and "The youngest was diagnosed with HIV. Now his immune system has weakened, his hemoglobin has dropped, and because of this, problems arose, later ulcers formed in the intestines. We are at home with him," Aigul shares.
The child's hemoglobin dropped to 60 due to insufficient nutrition. Now the doctors prescribed medications and told him to give him foods that raise hemoglobin. But the family doesn’t have even enough money for the bare minimum.
Aigul receives an allowance of 700 soms per month for herself from the state, 200 soms for each child and 5 kg of flour from the Taiwan Fund. In addition, she worked part-time at home.
He pays 2,500 soms for an apartment. He takes the drugs from the AIDS center.
Once a month she buys 1 kilogram of meat and cooks it for a month. She also buys 20-30 eggs. The family mainly eats pasta. He buys apples as a fruit, but very rarely. But he tries to take carrots more often and make salads out of them for the children. She bakes bread from the five kilograms of flour that the foundation gives her once a month. The family does not buy milk or cereals - there is no money.
If you want to help Aigul and her children, you can transfer funds to the Elsom number: 0 700 593 671.
“Yes, it’s a disease, but nothing more. I accepted it"- Alexey says calmly (all names have been changed at the request of the heroes). He has an intelligent, attentive face and something professorial, knowing in his gaze. No wonder, because Alexey is a psychologist. Today he helps people with HIV accept the disease and stop the war with themselves. He has a wife (HIV negative) and a daughter (HIV negative). He is successful, accepted in society, prosperous. It would seem like a happy ending? Why tell this story at all?
But Alexey and his wife Irina will not show their faces to the readers of Onliner.by. Why? Yes, because they live in Belarus and look at things realistically: a person who reveals his HIV-positive status risks facing rejection, isolation, and discrimination. And even more so a person who “dared” to live an ordinary normal life with a healthy wife and give birth to a child...
This story is an attempt to show the world of a person with HIV from the inside. There is a lot of guilt, anxiety, pain and despair. But there is also a place for love. Just listen to the end.
"Dead end. The locomotive has arrived and is standing"
In the early nineties, the generation that graduated from school ran straight into emptiness. Previous ideas and meanings were destroyed. There were no new ones. But you could easily call a taxi, and any driver knew where the heroin outlet was in the area. And the Roma in the private sector offered drugs “at a reasonable price.” This was Alexey’s reality at about 16 years old.
- When I graduated from school and had to grow up, I didn’t really understand what to do next. I was scared because I was forced to join the army, but I didn’t want to serve. At that moment drugs came into my life. First I tried marijuana, then injectables. I only came home to spend the night and eat. There was no work, no profession, no meaning in life. Ten years passed like this. I don’t remember when the HIV infection started.- says the man.
Alexey learned about his HIV diagnosis in 1997. At that time, this disease was considered fatal. There was no treatment. There were posters with huge inflamed lymph nodes, dying guys, the words “You have two to five years left” - in a word, a complete set of horrors.
- In 1997, I once again underwent treatment for drug addiction at a state clinic. Forcibly? No. All addicts periodically went to the hospital themselves to rest, switch gears, change the environment, get off the heroin dose, relieve pain, sleep, eat, all the while knowing full well that this “treatment” would not help in any way. Because they didn’t work with the psyche back then. After exactly two weeks of detoxification, addicts got into a taxi and went to the same point for heroin from which they were brought to the hospital.
Blood was taken at the clinic. For some reason I knew that I had something. Firstly, the lymph nodes became inflamed. Secondly, the doctor came up to me, first looked out the window for a long time, then at me. With sympathy. And drug addicts usually do not evoke sympathy from doctors. Aggression - yes. But here there was sympathy, and I began to guess that something bad had happened to me. “Why are you going to check out? Lie down with us a little longer and get some sleep,” the doctor started the conversation. And then I was called to the AIDS Center on Ulyanovskaya (we had one like this before), and the diagnosis was announced there. I was taking so many drugs back then that it seemed like I shouldn’t have cared. But I felt shocked and devastated.
The drug addict constantly experiences extreme despair. What else do you feel when you realize that you can’t recover, you can’t stop using? No matter what spells you read to yourself in the morning, right in the evening you go for a dose again. No matter what hospitals or doctors you go to, it’s all in vain. Addiction in those days defeated a person 100%. Everyone hopes for your recovery, but you understand that sooner or later you will die from an overdose. Or they'll take you to jail. Life turns into an existence in which there is a lot of pain, grief, drugs, anger, despair, hopelessness. No hope, no light, no future. It would seem that it doesn’t matter what you’re sick with, what you die from...
Despite all this, the news about HIV absolutely gutted me. If some tiny hope for the future still smouldered, it has now ceased to exist. Such a dead end when the locomotive arrived and stood still. Neither forward nor backward. Nothing. Emptiness. It’s as if the phone’s battery is dead, blinking red, and there’s nowhere to recharge it. But you can’t lie down and die. You still get up in the morning, brush your teeth, plan something...
“I admitted that I have HIV, the group surrounded me and hugged me”
Alexey hid his diagnosis from everyone - both from friends and from parents. He confessed only during a therapeutic group at a rehabilitation center in 2001.
- In the group, we learned to live in a new way, we understood that, besides drugs, drug addicts, police and hospitals, there are other things: living relationships, tears, laughter, frankness, support. I admitted that I have HIV, the whole group surrounded me and hugged me. Not at the level of words, but with my whole being, I felt that I was accepted. It became much easier for me to live with the diagnosis. Previously, I wanted to deny it, shut it up somewhere, pretend that it didn’t happen to me. Dissident thoughts that HIV does not exist are just from this series, when people cannot survive the state of shock because no one supports them. Then I told the truth to my parents. And it became easier.
After ten years of drug use, Alexey began (and still continues to this day), as he himself says in medical terms, “sobriety.” And since 2007 - antiretroviral therapy, that is, treatment for HIV. At first, Alexey, like other patients, did not understand the need for therapy. “That’s why HIV is scary,- says the man today, - Nothing hurts you, so why take medicine?”
And yet the disease made itself felt. Firstly, a state of constant cold, when it is impossible to warm up, no matter what you do. Secondly, chronic fatigue. Alexey only had enough strength to get himself up in the morning, go to work, and return at six in the evening and immediately fall asleep in exhaustion. And so every day. In the end, Alexey started taking medication and still does it - two tablets every day, morning and evening.
“Maybe with HIV infection no one will love me?”
- When I confessed to people about my diagnosis, I felt more comfortable, I realized that the world consists not only of those people who can neglect or judge me. I started building relationships with girls. There were still a lot of questions. Should I talk about the diagnosis or not? When to do this? Will they turn away from me or not? Maybe with HIV infection no one will love me? I tried to figure out these questions. Sometimes I was honest and brave, sometimes I was not. But I always thought about the safety of my partner.
The story of meeting Irina, my future wife, was quite banal, like all ordinary people. It was during advanced training courses. Alexey had already received a higher education and worked as a psychologist, and Irina was engaged in marketing in a public organization.
- We knew Irina in absentia because we worked in the same field. And I didn’t hide my diagnosis. Therefore, I did not need to reveal the secret about HIV infection, think about how she would react to it. I told Ira: “So that I don’t mislead you about the risks in sex, you can talk to specialists, doctors. Find out how the disease is transmitted and how it is not transmitted.”
She talked, communicated - and that’s it. It became clear that there are no risks or they are minimized in two cases. The first is that when a person takes treatment for HIV, his viral load decreases. In medicine it is called “undetectable”. And the person becomes harmless to others. To reduce the load, you need to take antiretroviral therapy for at least six months. And I've been doing this for many years. The second factor is protection. If people use a condom, this is enough to prevent them from infecting each other. All. Of course, we can imagine some sudden event when the condom breaks. But, again, if a person is taking treatment for HIV, it is not dangerous. HIV infection is not transmitted in everyday life.
This is how medicine and common sense defeated what Alexey himself calls “a person’s instinctive internal fear of illness.” Ira said yes. After several years of marriage, the couple began to think about a child. What methods are there? IVF is not performed on patients with HIV in Belarus. The Republican Scientific and Practical Center “Mother and Child” has a device for cleaning sperm from HIV infection. After cleaning, artificial insemination occurs. This is a difficult method, and although Alexey and Irina tried several times, they did not succeed.
“Then we decided to go the natural route.” After all, my viral load is very low, “undetectable.” We had a girl, she is now three years old. She is healthy, my wife is healthy - and thank God. I really wanted to have a family and children! Yes, it is more difficult to do this with HIV infection, but if you follow all the rules and consult with doctors, it is possible.
“A person with HIV is forced to live in constant anxiety, with the Criminal Code on the nightstand”
- Alexey, in the Criminal Code of Belarus there is Article 157 - “Infection with the human immunodeficiency virus.” Moreover, it even applies to families and officially married couples. In your opinion, is this normal?
- Of course not. Although Article 157 should be revised in the near future, it is a trap for HIV-positive people. A dead end in which you cannot possibly avoid being punished. After all, the case is initiated without a statement. That is, it was not the partner who came and said: “He infected me!” It happens differently. People go to get tested for HIV. And if both are positive, an epidemiological investigation is carried out: “Who infected you? Who did you sleep with? Yeah, with this? Come on, come here. Whether you are a husband or not is of no concern to us. Let’s go to the courtroom and there we’ll decide how much of a malicious infester you are.” And a person does not have the opportunity to say: “Wait, but I told my partner about my HIV status. I took precautions. There is no applicant. So why are you filing a case?”
An amendment to the law is now being proposed to make it possible not to initiate a criminal case if a person has warned about his status.
It is clear that the police are catching women from the sex trade who transmit HIV without a condom. A prostitute who infected several partners is jailed. But why aren’t the men she infected held accountable? They also have a head. Why didn't you wear condoms? Why did you use sex services? There is mutual responsibility here. But in the law it is one-sided - only for those who have HIV status.
And a person with HIV is forced to live in constant anxiety. With the Criminal Code on the nightstand, I would say.
Photo is for illustrative purposes only.
It would seem that we are a modern society. But the stigma against HIV-positive people has not disappeared. Neighborhood gossip is one thing. I don’t even want to consider this level. You never know what the neighbors say. But when a person is discriminated against by his own state at the level of laws and behavior of civil servants, this is very bad. If a person with HIV goes to the hospital for medical care and reveals his status, he may be refused and discharged on the same day - how many such cases have there been! Or doctors will put on twenty gloves during a banal examination, whispering in front of the patient... When there is criminal liability at the legislative level, there is discrimination, what can we talk about?
I understand that people who can transmit the disease need to be protected. But barriers should not be to the detriment of people with HIV. Their rights cannot be affected. Everything should not come down to punishing people with HIV-positive status. There must be reasons. If we say that the virus is only transmitted through blood, then why the hell can I not go to the pool? Why can’t a person with HIV work as a surgeon in our country, but in Sweden they can?..
Or all these posters with deaths, “AIDS - the plague of the 20th century”, syringes, poppy heads - why is all this? What does this have to do with, for example, a girl who was accidentally infected by a guy? Yes, she had never seen drugs in her life! She is sitting at a bus stop, she has HIV. She looks at the poster, associates herself with these syringes and thinks that if she admits her diagnosis to anyone, then people will decide that she is a drug addict, which means she is to blame. Or hundreds of housewives who did not leave their homes? My husband went on a business trip and then passed on HIV. Which group of drug addicts does she belong to? And if you are truly a drug addict and have contracted HIV, that’s it, you have no excuse. There is only one thing in the comments: “blue” or “green”, that’s where you belong. And this is a question of the maturity of society. HIV-positive people become a kind of scapegoat on which all human failure can be blamed. But another 10-20 years will pass, and everyone will forget about HIV. This will remain a disease of the past - like smallpox, which today, thanks to vaccinations, none of the doctors have seen.
“My friends said that I was making a big mistake”
Irina proudly says: “Lesha and I have been together for nine years now.” Satisfied woman, happy marriage. But. Ira carefully hides the status of her husband. Even her mother doesn't know about this. Why? Because acceptance is never a virtue of our society.
- When we met Lesha, I was working in a public organization that also helps people living with HIV. Over many years of work, I began to treat HIV with less fear. I knew that there was such an Alexey, that he had a positive status and that he was doing an interesting job - that’s probably all. We met in person at advanced training courses. They lasted a week, and all this time we were next to each other,- Irina recalls.
Time passed, we continued to communicate. At some point I definitely understood: yes, we are starting a relationship. And that's when I became scared. There were two conflicting feelings. On the one hand, there was tenderness, love, attraction to Lesha, and on the other, of course, fear of the disease. Probably, if I had not worked with the topic of HIV for so many years before, I would not have continued the relationship. After all, getting infected with HIV was one of my biggest fears. Agitation and the fight against AIDS played a role in the 1980-1990s, when the epidemic was just beginning to spread and posters “AIDS - the plague of the 20th century” and death with a scythe hung everywhere. This was probably deeply embedded in my subconscious.
I told my friends about Lesha’s status, shared it with them and saw the horror in their eyes. They said: “Ira, what are you talking about! No need!" They warned me and said that I was making a big mistake.
I'll be honest with you, I don't know what worked. Why did I say yes? Why did you get into a relationship? Probably, my feelings overcame my fear, and I trusted Lesha. In addition, he works in this field, knows a lot, and advises patients with HIV.
Ira gave birth to a child like an ordinary woman. She simply did not tell the doctors about her husband’s status - and they did not ask.
- Since I know that the stigma is very great and even includes criminal liability for infection, then, to be honest, we hide everything very carefully. We protect ourselves and the child. When I was pregnant, I didn’t tell her that my husband had a diagnosis. There is a practice in clinics where a husband is told to take an HIV test. But this is all optional. I was preparing to fight back, to say that my husband did not want to take the test, I even took some kind of manual with me, where it says that such tests are entirely voluntary. But I didn’t need it, because the doctor didn’t remember about it at all. So no one found out anything either at the clinic or at the maternity hospital.
“I told Lesha: let me write a receipt that I know about your illness”
“I consider the situation in which a person with HIV could hypothetically be imprisoned to be abnormal, although his wife knows about his status and she herself, of her own free will, is in this relationship. All adults accept responsibility. I accept responsibility, yes, I take risks. And this is not only my husband’s business as a person with HIV, but also my own. If a person warned about his diagnosis, then there can be no talk of punishment. If he did not warn and did not take any precautionary measures, then, of course, there must be other possible consequences. I even told Lesha: let me write a receipt that I know about your diagnosis and accept responsibility. But it doesn't work. No one will accept such a receipt. So the situation is ridiculous, it definitely needs to be changed. For me, criminal liability for infection is the same stupid, non-working lever as the Grim Reaper on posters. As if that would prevent the spread of HIV!
- Tell me honestly: you feel anxious, you’re afraid of getting infected?
- Yes. Not every day, not all the time, but it happens. Especially when we were in the process of conceiving. I experienced great fears - but the reason was real. Now I don't feel anxious every day. Sometimes I even forget that Lesha has something. Fear arises when something happens: a small wound on a husband, for example. I think this is a normal instinct of self-preservation. I used to do HIV tests quite often, exactly once every six months, but after pregnancy and the birth of my daughter I stopped. We only have sex with a condom. There were no other situations dangerous for infection. Now there is less fear - so the number of tests per year has decreased.
In our everyday life, everything is exactly the same as in any family. We eat together from the same dishes, our toothbrushes are in the same glass. No problems at all.
I think our society lacks acceptance. And not only in relation to HIV infection. We have many special children, people with disabilities... Society rejects them. People talk like this: “This doesn’t happen in my family. This means that there are no such people at all. They don't exist." But we exist!
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Photo from elpais.com
The story of the adoption of an HIV+ child is told by an adoptive mother.
My husband convinced me to stop therapy
Dasha is a child about whom they say “born in love.” Her story could be made into a film. Father and mother loved each other, but the marriage had obstacles, and even despite Dasha’s mother’s pregnancy, the young people had to separate.
Soon Dasha’s mother met another man who supported her and proposed. But the groom turned out to be HIV positive. She and the child managed to become infected.
For Dasha’s mother it was such a shock that at first she wrote a refusal, and when she came to her senses, they did not return the child. So she was discharged: without a child and with a diagnosis.
She tried to find out about her daughter's fate to no avail. My life was cut short at the age of 28 - my husband, an HIV dissident, convinced me to give up therapy.
It was precisely because of his dissent that this man did not tell Dasha’s mother about his diagnosis: after all, there is no such virus, which means there is no disease.
She died without having time to meet Dasha, whom she did not stop looking for and found several months before her death.
Dasha spoke with her mother on the phone (they lived in different cities), waited for the holidays to see each other, but met at the funeral. For about an hour, Dasha did not leave her mother’s coffin, peering, absorbing every detail in order to remember it forever.
Kate, foster mother of 12-year-old Dasha with HIV+.
In that orphanage, children died like flies
Photo from steemit.com
— Does Dasha hold grudges against her parents, against “fate”?
— Dasha is a very bright person and loves her mother. It was not difficult for her to forgive; she understands that her parents themselves are victims. She has two mothers, her own and me. And both are very dear to her.
— How did Dasha come into your family?
“We learned about Dasha from volunteers; they visited an orphanage where something strange was happening and offered to take her. They came for her, and the local doctor began to dissuade her, citing the fact that she was not a tenant anyway: three of them had already died.
When we saw how the babies were kept, the hair on our heads began to stand up. The staff lived in fear of getting infected, so they didn’t really wash the children - they put them under running water and put on diapers for a day (for a year we treated the consequences of such hygiene).
But the worst thing is that the prescriptions of the doctors at the regional AIDS center were not followed, and medications were added indiscriminately to who was prescribed what... into the mess.
The calculation is simple: hungry children will eat. But one of the syrups was bitter; for some, hunger prevailed and the children ate, but Dasha could not. As a result, she was left without food and, most importantly, without treatment. She developed a high viral load and a huge weight loss. She really didn't have long to live.
It's a miracle that she pulled through. I am grateful to the doctors of our AIDS center, who managed to reduce the load to undetectable and save Dasha. All this happened more than 10 years ago, after that incident they began to monitor orphanages and children's homes, and thank God, now such an attitude is more the exception than the rule.
"We lived one day at a time"
Image: RIA Novosti
When we took Dasha, we told ourselves that if she died, we could at least give her a proper burial. And then every day passed - like a day of life, a happy life, which is valuable in itself, and not for the future.
I told myself – even if she doesn’t have much time left, let her live these days happily. Until Dashino’s condition stabilized—for about a year—we lived without looking ahead.
Now Dasha lives a normal life - she goes to school, seriously studies music and dance. She is our engine. She has so much love and willingness to give that it energizes everyone. I don't know about her or my other children how long they will live, but I hope that their days will be filled with love and happiness.
— Weren’t you afraid of the diagnosis yourself?
“When the volunteers showed me the photo, I realized that this was my girl, and I simply couldn’t leave her there. Of course, it was scary, I knew almost nothing and I was worried not only for myself - we already had children.
Then I went to the doctor at the AIDS center, he explained everything. But as a suspicious person, it seemed to me that two opinions are better than one, and my husband and I went to another AIDS center. After we thoroughly understood the issue, the fear went away.
— Have there ever been situations where you were lost and didn’t know what to do?
“Now one of the children can finish an apple for Dasha, drink from the same mug, but in the first month, until the viral load had dropped to undetectable levels, there were moments of panic. I remember the older children, who had already grown out of diapers, saw a bottle-pacifier and began vying with each other to hunt for it.
One day, walking into the kitchen, I saw Polina drinking from Dasha’s bottle. I got worried and called the doctor. But she reassured me that HIV is not transmitted that way.
“We told our daughter about the diagnosis after her mother’s funeral”
Photo from huffpostmaghreb.com
— How did you tell your daughter about the illness?
“After Dasha’s mother’s funeral, we managed to talk about this topic. She was worried, it was important for her to know why her mother died young. I explained that this happened due to the fact that my mother did not take medication, and a person lives on therapy for a long time. Therefore, Dasha takes treatment very seriously.
What worried her most was whether she could have a family and children. And I was glad to learn that therapy now allows this: there are many happy couples who have healthy children and the spouse does not become infected.
— Do you hide your child’s status from others?
— We have wonderful care and clinic. I don't reveal my diagnosis unless necessary, but I also don't tend to be overly secretive. When we went to kindergarten, I told the director, nurse and teacher. At first I was afraid of their reaction, but I did not encounter anything but a friendly attitude and support.
It also happened at school and in clubs.
All my close friends know, and I am sure that they will not chat in vain. But I don’t let Dasha’s classmates or friends know about the diagnosis.
This is her life, and when she grows up, she will decide whether to tell everyone or a narrow circle about it.
— What do you think is the most important thing about the HIV problem that you need to know?
— In our country, many people still believe that HIV is a problem of marginalized sections of society or people of non-traditional orientation. Whether a person is infected is determined “by appearance”, by status: “he does not look like a sick person.”
However, just walk through the AIDS center and you will meet the same people with whom you travel on the subway, work, or study. They look completely healthy. Therefore, the expectation that HIV is a disease of marginalized people, or that one can tell about a disease by its appearance, is an outdated stereotype.
For me personally, the topic of HIV dissidence is important to me because of Dasha and her mother. There are entire communities propagating that there is no HIV, it’s all a conspiracy of pharmaceutical companies. The consequences are the most tragic: without informing their partner about the disease (what to tell if there is no HIV), they infect him and die themselves.
But the worst thing is when a child with HIV, whether natural or adopted, is deprived of treatment. In such cases, if you do not intervene in time, the child dies, and there are many such cases.
And there are those who know about their diagnosis, but still do not accept therapy.
— But why should people who recognize HIV refuse therapy?
— It happens that they don’t see the point in therapy, they don’t believe in its effect.
Once at the AIDS center, I talked to two teenagers who did not want to take therapy because they did not value their lives, they did not care what would happen next.
They are actively searching, they will not warn about HIV, they will not use protection - they don’t care anymore. They go ahead and don’t take medications; their viral load is huge. Imagine how many they will infect.
Unfortunately, such situations are not uncommon; we need to work with them. This is why there is no need to be afraid to talk about HIV.
Another story
