“People are afraid to even “like” my photo.” How to live with HIV

When Queen Anne told the priest that she was HIV-positive, he got scared and put it in the back of the queue for communion. And then apologized: “Forgive me! I do not know.” Not all priests are capable of it, said Anna. She lives with HIV for 8 years and tells how deceptive the statement of the priests “in our parish, there are none!”, what do the priests know about HIV, why should it feel those who only learned their status, and how do you manage to talk people out of suicide.

Anna Koroleva

  • With a plus: stories from hospital of people living with HIV
  • “I was eaten by the blackness and the fear, I could not accept that I have HIV”
  • He infected me with HIV and were careful to cover all traces
  • HIV is now a part of me, like an arm or a leg
  • Contraception or chastity – how to protect adolescents from HIV

– You have a great narkota? – I don’t have it. I never used drugs. – How long You been clean? For my entire life. I never used drugs. – Have you been on heroin? Or… chemistry? Never sat, not lying, not standing next to heroin and chemicals. I never used drugs! – How do You feel about sex workers? – Who is it? Women with low social responsibility, prostitutes, You know? – No. I was never one of them! – Either You’re lying or… then why do You have HIV? – From her husband! From my husband I have HIV! He’s an addict? – AAAAAAAA!!!!!! Nooo!

From instagram Anna Queen

We have a syringe or something, have your knees stick out?

– “Looking at you, it’s hard to imagine that you are sick”, “he will say.” You say this often. How do you feel about these words?

– Sometimes outraged, now often think: “and God be with you.” Some suggest me to touch and good look. Here we are sitting in a cafe, look around who and with what illness? Let us then each poster will hang: “Cholecystitis”, “Hemorrhoids”, “HIV”. Well, as for mind to determine?

Last night met a woman and her mother. Mom little older than me, and that it was a tragedy when she learned that my daughter had HIV. A perfectly normal family, all practising. And she still even looking at me, feeling, looking at the record, said: “this can Not be!” So she hammered into his head that it is a disease of the marginalized.

That is, when you communicate with people you have a certificate ready?

– Yes, to prove that I did not invent it. Some say that I come up with. Then I ask: “Well how should look a person with HIV? We have a syringe that, the knees should stick out?” You can not notice the virus and seem perfectly usual.

– How people answer the question about “look”? What are the assumptions?

– We had an experiment. In Sechenovskiy Institute we had a group where we were doing sports together: people with status and people without. Families people come. And no one knew someone with HIV and who is not. And one day the head we were seated and asked how people should look / status. Replied that he must be depressed, head down, a posture of shame and sacrifice, the visible sore. Plus he is always an addict, so thin, sunken cheeks and trembling hands.

And then asked to raise the hands of those HIV-positive who lives with an open face. I picked it up. And deathly silence. And next to me the girl turned around, “Wow!”

So what is the conclusion? On external signs it is impossible never to find this person.

God has shown what will happen if I continue to deny HIV

Three main myth about HIV?

First, what externally we can calculate, second, that someone spreads the infected syringes, and the third that hurt only marginal. Of 53.5%, according to academician Vadim Pokrovsky, of all newly infected are not drug addicts and we are talking about heterosexual. Among them are MPs, and artists, and PhDs.

– And you – teacher. As your husband told you about HIV? You then were not married, right?

– If two churched people want to marry, they are completely open to each other, otherwise it’s a lie. He said I have the disease. I asked whether it is treated, he replied, that there are pills.

But it explained that all far-fetched: “I’m 11 years with this disease, she never did.” His mother, a nurse, added that it’s just low immunity. You should eat frogs, brew pot, and is a good immune system.

– Why do you believe?

– Imagine in front of you sits a mountain of muscle. A man with a capital letter, smart, strong, confident, mentally strong. His stamina is huge. The spiritual father has blessed us in marriage, and said, God forbid, if there are children, but the children have not succeeded with HIV.

My donor started to be treated when he jumped the temperature up to 40. It looked scary: tall temperature, a fever and he’s covered with herpes, talking, could neither stand nor eat, he lost 27 lbs. I just pulled in MGTS (the Moscow city center for AIDS – approx. ed.), he immediately began to drink antiretroviral therapy and completely regained health.

– Has that changed your attitude towards the disease?

– This case totally changed my Outlook. I believe that the disease is. To me God has shown what will happen to me if I deny HIV. The virus I got right after we got married. When I found out I was scared, but not so when I saw that my husband happened. God has shown how to collapse and how to climb. I now take one once a day during lunch pills, and HIV this is done, the viral load can no longer do to hurt me.

In our parish there are none

– You have created a project “I Believe.Know.Live,” what’s his problem?

I gave your business cards to the HIV clinic, and the doctors from the Moscow center when you see that patient should another to conduct a conversation, my phone give. Then the assistants started to appear. And we created the movement “I Believe.Know.Live.” This will not only assistance and advice, this educational program among priests.

– What educational program in a Church environment?

– When I went to the temples and began to ask employees, what do you know about HIV, what work need, me being brought to a screeching halt, the priests and the temple workers. Well, I say, comes to you people with a diagnosis and says that she wants a divorce, what would you tell him? And who are you? Why are you asking? They get scared. Or say: “in our parish there are none”. Here I was at Easter in the temple near the house, there stood two hundred people. Statistically, every five minutes one person is infected.

And in Sergiev Posad I once took the water in the chapel, asked the monk to pray, gave him a list. He asks: “who is This?” Say: “the Sick people of HIV.” “Ha, there is no disease!” The responsibility should be! There were other people standing around, listening to what you say.

– Well, let him speak. People will then go to the doctor and find out all about HIV. Or not?

– We now and doctors do not believe, and to each other stopped. Believe father. We have a priest and a therapist, and a doctor and a nurse. Hard people now live. And the concept of the Russian Orthodox Church is about helping people with HIV says that the priests must give accurate information about the disease. In 2005 she accepted.

We must help priests to work with people, otherwise they fall out. Help gays, prostitutes, and drug addicts. Simple and prosperous with HIV status no one does. The girl sings in the Church choir, marries a young man, and we have not decided to get tested, gets HIV and is going to commit suicide.

– You the real story now to tell?

Real.

– She killed herself?

– No. She’s just my mom said that will commit suicide. And mom doesn’t know what to do, and runs to the priest. And he has no reliable information, he can’t help. Good thing there are people like fathers Valery Bulynnikov, Igor Davydov, Anthony Kadyshev. I don’t know, maybe someone else is.

Valery was scared: “Stand at the end of the queue”

– I watched the recording of the discussion in which you participated, on TV channel “Spas” with father Dimitry Smirnov. From your dialogue clearly something cut. What?

– Father Dimitry Smirnov once called HIV-positive spidonostsy. And I told him: “You are like the priest shall bring love and good. How can people be called? I sit before you tell me that I spidonosets. Or show an example of how to behave as a priest, here admit the mistake and apologize”.

I wanted he stood up and said: “Men, forgive me, a sinner! I gave you false information. I was misled”. It would have been worthy. “Well, you will tell me more on how to behave!” – this was the answer. And I HIV a hundred percent was due Smirnova, my Church-going husband heard that this disease is not, and have convinced me by showing a video of father Demetrios.

“We can’t ask the priest,” said the leader. Why can’t they? Brave, the worthy priest should not be afraid to ask for forgiveness. No matter how many people came to the temple after his act!

Must be personal responsibility of the priests of the false information. After all, people die! Recently we in the SDS-2 died the priest has already been the stage of AIDS was not treated, “there is no disease”! Here in St. Petersburg there is a trial, father took the child from the orphanage, didn’t give therapy, the child died. And who is this? BA-bye-shka! Where? In PI-te-re! Not an illiterate peasant from the periphery.

“I learned that I have HIV… Yes, votserkovleniya… the priest told me God will not leave… no, about the pills not heard from Moscow and a half thousand miles away…”

“…Hello… found You via hashtag… our father said: she is guilty… almost managed to hang himself… daughter from school early…”

From personal letters to Anna Petrovna

– What is the most strange advice from the priest you received?

– Pray and it will pass. Go to the temple, and all will be well. Will not. Without treatment will not. Better to pray for God to send a good doctor.

– But God can do anything? It turns out, no?

– So that you can sleep with 1000 units of copies of the virus, and woke up – nothing?

– Something like that.

Ha ha ha! Lead proper lifestyle, do good. Or at least don’t do bad things. Went in the evening – think, let you today the sky is smoked. Then say: “Lord, I want to get better!” And God will answer you: “Well at least you get to MHZ” (the Moscow city centre for AIDS – approx. ed.).

– Many people think otherwise…

– Those people who think differently about HIV/AIDS, take out in black bags from the SDS-2 (Infectious clinical hospital No. 2 – approx. ed.). Talk to the priests who work there, they will tell you what are miracles and what it means not to be treated.

– What you told the priest in your temple?

– I came to confession, described that she was infected and asked me to come to the bowl, not if I infect someone. I didn’t know then that it is not transmitted. Valery was scared: “Stand at the end of the line.” I got up, took communion last, but I was hurt.

And then went to another temple. And there the priest said in the confessional that he had such people there is nothing that should be treated. And sometimes he doesn’t know who has what disease. If through the sacrament were infected, would become extinct, the entire Orthodox world. I have come to the end of the queue is still trying to get up. He stopped the line and pulled me: “You! Come here!”, and put forward.

– You returned to your temple?

– A week later I came back to my father Valery. Told the situation. And he thought, said, “Forgive me! I didn’t know!” Here it is, Christian love. And asked: “where I’m allowed to read?” I started to throw links. That’s decent behavior.

Now for example, I’m calling my father Valery about another girl in the depression, the first thing he asks: “is she on the pill?” I said, “No.” “Bring me a conversation”. That is, people are not lazy, went online, read the concept of the Russian Orthodox Church, information about the disease. He told her about the value of life, Orthodox worldview and led him to the fact that the pills should be taken. She called me: “Anna Petrovna, the first time I drank the medicine”. I write: “Sir, took place!” He Said, “Hurrah!” Plus one life.

– What do you think about the popular assertion that it is a payment for sins?

– It is written in the concept of the ROC, that it is impossible to consider the disease as the payment for sins. But in this life I meet people who say, if to look at themselves honestly, then they know what it is. If I was a smooth road, lived according to the Bible… it is something everyone somewhere. But I would not say that it is a payment for sins. In any case, let everyone decides for himself. Father so not exactly supposed to tell anyone, otherwise it is condemned. To take my case. She married a widower, have not changed and so on. But still I know where the Shoe pinches.

Better write that I died of a heart attack

– More about suicide wanted to say. Cancer, diabetes and HIV according to the who are among the first three. For HIV-positive there is a hidden suicide. When a person is either not taking the drug, or does not treat co-morbidities, the side effects. I ask, why? The answer is: better that I die from a heart attack than AIDS.

– So there is still AIDS.

– Well, I say hidden suicide, “let me write that I died of a heart attack”. So the children are not ashamed of and never shown. We need to stop telling people that they are only marginal. Here are the statistics from the UN this year: HIV is the leading cause of death among women aged 30-49 years around the world. In second place coronary heart disease, then breast cancer, tuberculosis.

I 38 here and I would rather die from HIV than from cancer?

Yes. You can die from it than from other diseases. And drug addicts, accounting for 5%. Scary, isn’t it? It’s just statistics. In Russia, catches one man in five minutes. While we’re talking, six people have received this status. We are in third place in the world.

Here came a film crew of channel OTR, took an interview with me. I have them for more than an hour and talked about ways of infection, and statistics about, well, everything. And then asked them who know their HIV status, who passed over the past year tests. The operator in response to: “what do I look like someone that needs to know your HIV status?” The question is, why I all this about? And this is true for the entire population.

Or, for example, here I am. Often lie in hospitals. And typical picture: falls, for example, a woman with a hypertensive crisis, she had taken tests for HIV, hepatitis, etc. the next day she goes out and she never finds out about your status.

– Well, from the hospital must call!

Ha ha ha!! Not only call, but, for example, write where HIV: results sent for further examination. Then what? One does not conduct post-test counseling and tells us where to go, they don’t even know where the city center for fighting AIDS.

– You mean what the doctors say?

– All! Here and write in big letters: ALL. I often lie in hospitals. I know what I’m talking about. And then what the poor woman with a hypertensive crisis to do? She goes to the clinic, there is not even paying attention, rewrite what belongs to hypertension. And lives such a woman until she starts Pneumocystis pneumonia. Gets in infektsionku and they said, “And you of immune cells in 20 pieces like you didn’t know!” “But I did not explain what it means and what to do.” And last year, the AIDS a man stood on the account, is 96 years old!

– Yes you that!

Yes, it turns out that in our country for the first time revealed more and more age people. And they find out by accident, when age-related diseases go to the hospital.

– You are often the doctors ask, as you are still alive?

It’s always when they find out how old I am. Many doctors are surprised: “You still alive?” I even have the hashtag #yeshiva.

Sold the apartment, handed over children to the orphanage and went to Goa

You left your room at the AIDS centers, the condition of calling you people?

Is the tears, the shock. Men also cry. Recently called interior Ministry Colonel who was afraid to give his name. And suddenly someone finds out that I have HIV. I say, what if someone finds out from me that you have a boil on the leg! What? You will have another way to communicate? Yes!

Wife and child left him as soon as I heard. He wanted to know how to live. The points directly. I say, you need to register. This is impossible! I say, then a private clinic. And then we discussed how to improve relations with his wife and son.

Recently, I called one woman, 60 years old, with the question: “can I look at you?” I say, so here are the pictures. No, suddenly it’s a lie and a photoshop. I say go for it. She came for an hour, I watched, listened, touched me. She, too, married a widower, as I got the status from her husband. At the end of the conversation said: “I looked, sure, I’ll live.”

– You said somewhere that know what to say to such people.

Yes. But communication should be divided, believer or not. Believers another world, they always feel the support. They don’t stay alone with the disease and not think me. Rather, what. It immediately pulls out of the depression and adjusts to a lifestyle business. The believer knows that his blood is death, and we need to take care of your health, otherwise everything will end badly. And so to me more easily.

– That all believers are conscious?

There was a woman who said, “serves me right, that the Lord has sent me for the sins. I will not be treated and want to die.” After a two-hour conversation in a cafe when my vest was soaked, I had to just take her hand and take to the priest. Deep down, she wanted to live.

For 8 years of my life with HIV I realized that people are not so much afraid of diseases, but the fact that it was considered marginal. And what will Princess Marya Aleksevna? Public opinion weighs heavily. The woman father cleared his brain, that the Lord decides when and to whom to go. She began to take medication.

“Anne, good day… at least You speak out… now I’m registered in the mental hospital… children?.. guardianship to the mother… husband spree… AIDS… to the regional center will not reach… is there any pills… my father said, my own fault, because the husband went whoring… don’t want to live”.

“dad…I’m single… my daughter is also HIV… no, I was not treated the wife… got drunk and hanged… inveterate banned… daughter made fun of all… how to live”…

From personal letters to Anna Petrovna

And unbelievers?

With them harder. I don’t follow through God to approach. There is a woman I have known for 4 years, and she feels worse and worse. She’s a doctor, believes in nothing, is depressed, weighs 44 pounds. I got HIV from a loved one, he died a small child. But to regret, to find a common word, I don’t know how. I just try to keep these afloat. To explain that life goes on.

The other day I met a woman diagnosed hindered from the life that she led. She came to God, were baptized. And there are others. Once I have a diagnosis, walk, flaw. It is mostly non-believers. And now I want to try everything! And well, if it’s just a jump from a tower, travel, not drugs or orgies.

What is it with people?

– Apartments sold. I had a friend a couple of Bryansk region, the husband and wife. They learn their status, sold the apartment, children surrendered to the orphanage and went to Goa, got hooked on drugs and so on. So I decided to end my life.

Mother, promise that this year you don’t give up

– Why you still did not hide the diagnosis?

– I am absolutely an outdoor person. Myself, I can tell. I was showing all records, medical card. Because if we do that, we go to the stigma.

This openness doesn’t bother you.

Not yet. I feel confident that my son supports throughout. I decided to live with an open face because I thought, maybe I have to do HIV and given.

– Have you lost friends, family because of this?

– I was once a very bad son in the exercise, and I’m alone and die. I asked my aunt to come out of the store and brought back something. No, no, no. Time ask, two, and then I realized that all. I supported Sonia Masure, the wife of a deacon of the Trinity-Sergius Lavra. She said, well, you pray, “Deliver me from evil”, well, that’s saved you the God of these people.

– What about your friends?

– People are afraid even to like my photo. I’m asking why. I say, and suddenly people will see that I. and think that I am also HIV positive. Or a friend we’ve been friends for more than twenty years, said, “an’ be offended – no offense, but I can’t overcome!”

– Even for a second, you regret that opened?

– No. Would be a different situation, and they would leave. It is not necessary to rely on people, but to God only. I’ve realized that it’s not important. Mental black, resentment, hate, the present, impatient of the imperfections of others, anger – these are all manifestations of dislike. But God wants our soul is cleansed from it. And I want to have something to report to Him, now if you with us a meteorite falls. As Vysotsky sang: “I have something to sing, standing before the Almighty, I have something to report to Him.”

– How do you support son?

– If not for him, I would not have survived. I wanted the son was not ashamed of me. So he can’t see me blown out, drunken, lockable house. I would like to son said, mom boy, took himself in hand and pulled not only himself but tried to make it so that nobody died.

Was a terrible moment. His father, my first husband died from lung cancer. And I just put AIDS. Son served in the interior Ministry, came to the hospital after work, I sit in my chair, I had no strength whatsoever. Here he stands with two doctors in the doorway. I sit white, his father is, and he tries to maintain: “Everything’s fine, mom! I eat, I won’t.” And one of the doctor’s tears start to flow, they are both gone, I on the wall behind them creeping and I hear: “I don’t know how this guy survives, the mother with AIDS, the father dies from cancer”.

My son went to the psyche. When his dad died, he said, “I lost my father, I don’t want to lose his mother. Mother, fight!” He is a strong believer in God, his faith is real, straight from the heart, otherwise it is not. You said, it was born in spite, you live in spite of, that act. “Mom, promise me that this year you don’t give up”. “I promise.”

Even his head into Regardie knows everything and supports us. If I’m not, son could fly to his office with one word: “Mother!” And he said to him: “go!” Moreover, the chief calls me and asks how health.

– Are you afraid of death?

– Physical suffering I’m afraid. And that son comes home, and I miss him. No idea what will happen to him.

– Do you remember 8 years ago, any regrets?

Yes. I came into this marriage that you contracted it. My family fell apart four years later but not for this reason. Show me one person who wouldn’t regret that have become infected with HIV. Yeah, I found a use, understand why. But no one will accept it.

***

Vasily Shakhgildyan, senior researcher, infectious disease physician of the Federal scientific and methodological center for prevention and fight against AIDS

Now in our country about one million people living with HIV. Almost 100 thousand new cases registered for 2017. More than half of new cases of infection associated with sexually transmitted. Becoming more and more HIV-infected women. According to Rosstat, one of the main causes of death of young women in Russia HIV-infection.

Currently taking the most active measures to survey for the presence of HIV, involving people living with HIV to medical care and treatment. About 50% of HIV-infected persons, consisting on the dispensary account, receive antiretroviral therapy. According to the State strategy for combating HIV in Russia, adopted by 2020, among other measures for the prevention and control of HIV-infection in 2019 should be achieved 70% coverage of sick people on antiretroviral treatment that saves a man’s life. The goal is to reduce mortality from AIDS.

Next year for the purchase of ARVs will be allocated from the Federal budget of 21 billion rubles and the regional budget of 10 billion rubles.

Awareness of this problem is. Society is becoming more tolerant towards people living with HIV. Alas, it is not uncommon for friends, relatives or colleagues of a person infected with HIV. It seems to me that the stigma and discrimination associated with HIV infection, is less sharp now. Although the dense people out there, too. But still many of us believe that this issue will never touch, because this is the inheritance of particular marginalized groups. Accordingly, there is no apprehension in terms of HIV infection, sexual behaviour is often unsafe.

We keep talking about stigma and discrimination. But there are other pressing issues: the involvement of infected persons in AIDS Centers, rapid administration of antiretroviral therapy to everyone who applied for help to the person, the quality of the proposed treatment, acute shortage of modern, safe, well-tolerated and convenient to ARV drugs, the level of providing inpatient care for HIV patients away from regional cities and the limited capacity of modern diagnostics and treatment of secondary diseases.

In addition to the traditional, you should use new approaches to HIV prevention, trying to cover both at-risk and “normal” people 30-45 years of age, the prevalence of HIV which is also high. It is necessary to evaluate the effectiveness of preventive measures, educational programs, educational activities in the field of HIV. All of this is important, but what is the efficiency?

Free distribution of condoms, needle exchange for drug addicts – it is also necessary to pay attention to. More widespread adoption of drug preexposure vaccination program for the prevention of HIV infection in certain population groups is also important. For early detection of HIV infection must be broader use of HIV self-testing. This and many other things we need to think now so you don’t have to solve other, more difficult and sad problem in the future.

Photo: Sergey Shedrin

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