Elena (city of Stavropol):
They recently lived together. We met on a website for HIV-infected people. Maria was infected 10 years ago by her husband, from whom she gave birth to a healthy child, because she started taking therapy on time. Nikolay has been living with a positive status for 20 years; he switched to therapy only three years ago, when he began to feel really bad. I was embarrassed to talk to doctors about my diagnosis. “Now I perceive HIV as a simple chronic disease, I am grateful to the state that it treats us for free.”
Andrey, 42 years old
My health was deteriorating. Doctors treated completely different diseases. But nothing helped. When almost everything had been ruled out, they offered to take an HIV test. It turned out to be positive. To be honest, my heart even eased a little - I thought I had cancer. I heard about HIV that people live with it for a long time, especially now that medicine allows you to lead a quality life. I registered and began attending the patient’s school; the first educational program began with the film “I+”. Almost nothing has changed in my life, the only thing is that the regimen has changed a little - twice a day you need to set aside a few minutes to drink vitamins.
Anna Koroleva, 50 years old
I found out that I have HIV in 2010. This did not come as shocking news to me: by that time, my husband had been HIV-positive for more than 10 years. But the more important thing here is that he was an HIV dissident: these are people who deny the existence of HIV and deliberately refuse any treatment. His mother, a medical worker, also belonged to their number: she believed that there was no such disease - there was simply reduced immunity. We subsequently separated and I started a new family.
I started taking antiretroviral therapy as soon as I could, and have now had an undetectable viral load for two years. This means that HIV is not detectable in my blood. Why did I decide to live “with an open face”? I just realized that people who find out their status after 40 years (old age does not protect you from the virus: HIV does not look at a passport or a diploma) find it much more difficult to accept it. Faced with the fact that magnificent women, amazing wives and mothers, outstanding workers, scientists, leaders are literally self-destructing and falling into incredible depression, I decided to reveal my HIV status in order to help others fight and overcome the fear of this disease. I left my phone number with the doctors at our AIDS center and asked them to give it to older women who need help, but who cannot or do not want to contact official psychologists - it is difficult for them at first. I know what to say to these women, almost the same age. I know how to help. I generally love people. And life.
Maria Godlevskaya, 34 years old
I found out I was HIV positive at age 16. Quite by accident: I took tests before hospitalization, brought the results to the doctor, and he scolded me: “Well, why didn’t you say that you have HIV?” To be honest, I was not very surprised: I lived in a hotspot area of St. Petersburg for HIV infection and there were HIV-positive friends around me. HIV was not something “like that” for me. I was more worried about my mother: she is a kindergarten teacher, a teacher from God. Naturally, the first thing she thought when she heard my diagnosis was that it would put an end to her career. But having gone straight from this clinic to the AIDS center, we received comprehensive information about the disease from the epidemiologist and both continued to live almost as if nothing had happened. I'm lucky. Perhaps young age also played a role. Now that I talk a lot with thirty- and forty-year-old women who are learning about their HIV status, I understand more and more that the main reason for their fears and depression is the heap of stereotypes about HIV that they have already accumulated over their lives. They say: “I’m like this...”. And what kind of “such”? You're just a person who's sick. You need to adapt to this. With HIV you can live quite a quality and comfortable life. It all depends on how informed a person is. This is why I am running a video blog “On the way about the main thing.” These are three-minute videos in which HIV-positive people answer the most banal everyday questions. A short guide: how to travel with HIV? How to establish a relationship with a doctor? How to give birth to healthy children with HIV? How to treat teeth? The lack of adequate sources of information very often leads to the fact that a person, having learned his HIV status, lives in a distorted coordinate system and severely limits himself.
Tasha Granovskaya, 38 years old
In 2003, I registered with the antenatal clinic for pregnancy. It was maybe ten weeks. And the year before that I got a tattoo. I took the tests, and three days later I was called to a consultation to inform me that I had a positive reaction to HIV. That's how I found out. This is still one of the most common ways to find out. The child's father asked for an abortion. A couple of old acquaintances started online bullying for a week, some people disappeared. How my life has changed... You know - for the better: minus the extra people, plus awareness and joy of life. At the moment, my condition is no different from that of a healthy person. But still, living with HIV in Russia is a little harder than life for an ordinary person. Although society's tolerance has increased somewhat recently, this is noticeable. Due to the growing number of HIV-positive people, it seems to me, among other things. I am actively involved in social work. I support HIV-positive people who have problems accessing medical services and their loved ones. For someone who has just received a positive HIV test, I advise you to take many, many deep breaths. Calm down, don’t panic, don’t go online. Just take a referral and go register with the AIDS center.
Angela, 37 years old
– ARV therapy helped me give birth to a healthy child 8 years ago. My son’s indicators are all normal and he is completely healthy. But I strictly followed and continue to follow all the doctor’s recommendations. My only regret is that at the time I was diagnosed with HIV, there was no such approach to controlling this disease. Of course, now this is much easier: drugs are issued by the state on a budgetary basis, so, one can say, all the conditions for a quality life are there. What I want to note: therapy does not prevent me from realizing myself either as a mother, or as a wife, or as a member of society. And this is the main thing.
Ksenia, 32 years old
– There are no particular inconveniences in this regard. At first there was a transition period, so to speak, of physiological adaptation to antiretroviral therapy. But these are all purely individual sensations; over time (and quite quickly) the body adapted to the drug regimen. And so – 2 tablets in the morning, 3 tablets in the evening. At the same time. At first I set the alarm, because I couldn’t miss it, but now everything has become automatic. No, there are no difficulties, that's absolutely certain. Many people will probably be interested in how an HIV-infected person feels physically. I answer: exactly the same as a healthy person. Only due to my HIV status, I am obliged to monitor my condition twice as closely as a person with a healthy immune system.
Polina Rodimkina, 38 years old
I was alone with the disease for a long time, I know that many infected people sit at home and are afraid to go out. Until now, HIV is considered a death sentence. In the vast Sverdlovsk region, only three people speak with an open face and talk about their status. There are no such people in Yamal at all. I'm here to say: "Guys, you are not alone, live and stop being afraid!" Now, I am ready to say that HIV is not a death sentence. Through HIV, I found myself, became a person, gave birth to a beautiful, healthy daughter and became a responsible mother. I can't imagine what my life would be like without HIV. Well, I would work as a lawyer, I studied at law school. But here and now I am happy, even in the most difficult times. It is important that a person does not remain alone in his misfortune, but is accepted in society, by his friends and loved ones.
In 2015, I realized that I was capable of more and decided to open my own rehabilitation center for people like me, calling it “Steps of Hope,” where people undergo rehabilitation according to a program that once helped me. Only people who have suffered from this can know how to help others. Today I am a successful director of the center and a participant in the social project “Open Faces”.
Igor, 36 years old
Many years ago I received a test result form and found out that I had HIV. I was confused and scared, I refused to believe that this could happen to me. I thought I was doomed to become an outcast. I thought that my family, friends and colleagues would turn their backs on me, that they would stop loving me and begin to fear me. I thought that my life was at an end, and perhaps I would die soon. At one point I had a whole lot of questions; it was difficult to understand where to start. Now I know that people like me have time to answer all these questions, and there are people who are ready to help me. And these people are doctors and people living with HIV, like me, are PLHIV.
I have been living with HIV for 18 years. Yes, my life has changed, but life is constant change, HIV adjusts plans, but does not cancel dreams, love, a happy family, career, children and friendship. There are 35 million people with HIV in the world, more than 7,000 in Estonia, and each of them asked themselves the same questions and many of them, including my colleagues and friends, found answers for themselves.
Denis, 28 years old
When I came for the results of my HIV test, the answer sounded like a death sentence. The world collapsed in one second, everything around became black and white. I thought: “What next? Why live? I have no future." But I met people who supported me in difficult times. They were also HIV positive like me. They were cheerful, enjoyed life and helped people like me. I learned that there is a treatment that can help me live a long time. And then I realized that HIV is not a death sentence. I remain the same, only a little more responsibility has been added to my life, responsibility for my health and the health of my loved ones.
I overcame all the difficulties and now I am happy - I have a loved one, my daughter is growing up, and I have friends. I appeal to those who have just learned about their status or cannot accept it: HIV is not a death sentence, treatment is available and life goes on!!!
Kira, 26 years old
I faced the problem of HIV 13 years ago, when I found out that my husband was infected. When I found out his diagnosis, it seemed that life was over, in an instant it seemed that all plans and dreams had collapsed, because at that time we did not have children yet, and what kind of family can be complete if there is no continuation in it? But time passed, and I began to think differently, because I was not going to leave my husband, he is the most dear person in my life, and his illness cannot change this. We had all sorts of things, it was very difficult, 5 years ago, my beloved almost died. He fell ill with meningitis, and he only had 14 healthy CD cells, but I begged him from God and got him back on his feet, at that moment he began taking therapy, and now his CD-4 cell count is 1050, this is very good, and viral The load has not been determined for more than 3 years, he feels great and lives a full life. The most important thing is not to give up, to believe and to have the desire to live. Everything is fine with us now, despite the fact that my husband has HIV+ status, and I am HIV-. We have a beautiful daughter growing up, she is already 4.5 years old, she is absolutely healthy. I want to tell everyone who is faced with this problem, do not despair, do not give up and wait for death. My family has already deceived her once. I know that we will live together for a long time, because the main thing is to love each other and support each other in any difficult moment. And AIDS is NOT a death sentence!
Vova, 28 years old
But why not just live without HIV and enjoy life? You just need to always remember that this can affect you too! I can say that there is nothing wrong with being infected with HIV! There is no need to be ashamed! You have to know, believe... and always hope for the best...
Sveta, 30 years old
I tell everyone that probably the only way not to be afraid of the diagnosis is to continue to live a full life.
Lena, 22 years old
HIV is not death, but a chronic disease, and death exists for each of us, infected or not... HIV is not a reason to call it quits, but a chance to rethink your life and understand the importance of how great it is to do good to people and QUIT DRUGS. And there will be a chance to have a family, a child, everything that life gives.
Olya, 27 years old
At first it seemed that life was over. I thought that I would never get married, but now there is hope. I thought I wouldn't be able to have children. And now I know that you can have children and live like ordinary people. And I believe: they will find a cure. I really want to start a family and have children. Health comes second. I'm keeping an eye on him. Every three months I get tested to find out my immune status. And if it is low, I try to maintain it, because I want to hold myself up until the time when they find a cure. I don't lose hope.
Vika, 26 years old
Victor, 32 years old.
A few years ago, I received my HIV test result and found out that I was HIV positive. I was very confused, I refused to understand that this could happen to me. I thought I was now an outcast. I thought that my family, friends and colleagues would turn their backs on me, that they would stop loving me and begin to fear me. I thought that my life was at an end, and perhaps I would die soon. At first I didn’t know what to do, there were many questions: where did HIV infection come from, what is it, how to treat it, and what needs to be done next. Now I know that people like me have time to answer all these questions, and there are people who are ready to help me. And these are doctors, and also people living with HIV.
I have been living with the disease for 10 years. Yes, my life has changed, but life is constant change, HIV adjusts plans, but does not cancel dreams, love, a happy family, career, children and friendship.
Nastya, 25 years old
HIV appeared in my life suddenly: I found out that my husband was infected. When I found out his diagnosis, my whole life seemed in vain, all my dreams collapsed in one moment. We didn’t have children, and what kind of family can be complete if there is no continuation in it? But time passed, and I began to think differently, because I was not going to leave my husband, he is the most dear person in my life, and his illness cannot change this. We had all sorts of things, it was very difficult, 5 years ago, my beloved almost died.
He fell ill with meningitis, and he had only 114 healthy CD-4 immune cells, but at that moment I helped him fight the disease - I reminded him of every pill he took when he started taking therapy, and now his CD-4 cell count is 1050, this very well, and his viral load has been undetectable for more than 3 years; thanks to antiretroviral therapy, he feels well and lives a full life. Now I understand that the most important thing is not to lose hope and not give up. Don't despair and don't wait for death.
I love my husband and believe that we will live together for a long time, and we will support each other, no matter what happens.
Victoria, 21 years old.
I found out that I was infected this summer, I was in shock, my hands were shaking for about a month, I couldn’t sleep, I didn’t want to live... Having thought everything through, I realized that life goes on, it can be just as full, you just need to love yourself more , the people around you, in general, I began to appreciate life and everything that and who surrounds me much more. No, I’m not glad that I’m infected, but nothing can be fixed, so there’s only one thing left to do – LIVE.
“I will sell the “berry” at a high price...”
A very anxious 25-year-old man turned to a psychologist for a consultation, with tears in his eyes. During the conversation, he said that the day before, out of stupidity, being drunk, he and a friend decided for the first time to use the services of commercial sex workers.
Waking up in the morning and slightly sobering up, he accidentally noticed “tracks from drug injections” on the hands of his commercial partner. Thoughts immediately flashed about possible infection with sexually transmitted infections and HIV infection. Remembering that in two days his wife and son were returning from vacation, and he could expose her to the risk of infection, he immediately went to the AIDS center for examination and consultation with specialists, because he and his wife were planning the birth of their second child.
The specialists informed the man about the possible risks and asked him to persuade his commercial partner to also undergo the examination. The diagnostic results showed that the girl was diagnosed with HIV infection and Hepatitis C.
Naturally, in view of maintaining medical confidentiality and confidentiality, they could not tell the young man about this.
The specialists explained to the man that an HIV test could be negative. This happens in two situations - if a person is not infected with HIV, or if a person became infected very recently and his immune system has not yet developed enough antibodies for the test to “see” them. For most people, the period of antibody accumulation lasts up to two to three months from the moment of infection, rarely – up to six months. This time is called the incubation period or “window period.” If a negative result is obtained during the window period, this does not mean that the person is not infected with HIV. Moreover, if a person is still infected with HIV, he can infect others. That is why it is recommended to be tested for HIV 2-3 months after a risk situation, for example, after unprotected sexual intercourse.
Over the course of a year, the main character of this story underwent examination; sexual intercourse was only protected; he had to explain to his wife everything that had happened.
Fortunately, his wife forgave him for his weakness, because he did not hide anything and did not expose his family to the risk of infection. And over time, according to the results of HIV testing, he miraculously turned out to be healthy.
Two years later, a daughter was born into their family. In the words of the man: “I will never again exchange family happiness for fleeting weaknesses.”
But such stories with a happy ending happen more often in fairy tales.
After information materials about the incident were published, a “line” of foreign cars lined up outside the hospital building, and the number of requests for HIV testing increased significantly. As it turned out, those who like to buy “berries” are expensive, there are many users of the services of commercial sex workers, and each of them has their own story, their own destiny.....
We urge you, our reader, to take care of your health and the health of your family and friends.
You can find out more information on HIV infection by calling the information line 32-74-51.
"A short novel - a play of shadows..."
A pretty, well-mannered, pleasant 59-year-old woman came for a consultation with a psychologist. During the consultation, she talked about her pain - about how she became infected with HIV.
She devoted her whole life to motherhood. She had been divorced from her husband for a long time and raised her sons alone. Thanks to her successful career, good income and love for her children, they did not need outside support. As they say: we lived soul to soul supporting and protecting each other. The sons became the pride of their mother, both received higher education, decent jobs, and started a family.
“Now the time has come to think about yourself, arrange your personal life. Go to the resort. Now you can afford it,” my friends advised.
Voucher. Rest. Party. Romantic dinner with a gallant man. Flowers, poems, sweets. He was so attractive and ideal that it seemed like he was the one you could trust with your life, it was easy and reliable with him...
And here is the evening of parting, the promise of a quick meeting. Correspondence, calls... in general, the man’s courtship lasted for a month.
Gradually, the heart, alarmed by love, began to “heal.” Work, home, familiar circle of friends. One day I felt slightly unwell, my temperature rose, and my lymph nodes became enlarged. After a while, my health returned to normal. I saw a doctor six months later. During a routine medical examination, the receptionist offered to additionally undergo a free examination for HIV infection.
Thunder, from a clear sky, a flurry of emotions, thoughts, fear, deep loneliness and defenselessness in front of the universe and the people around us. A diagnosis of HIV infection was made. How? Where? Why me? For what? After all, I always believed that only dissolute girls and drug addicts get this disease. How to live with this? How to tell my sons? What if their wives won’t let my beloved grandchildren come to me?
I listened to doctors' consultations mixed with bitter tears. Hospital My lies to my children about my cancer diagnosis... a confusing story about an upcoming trip to Moscow for treatment. In general, I composed on the go. And she herself was going to the AIDS Center. I expected to see bars on the windows and barbed wire around an institution with that name. But now I’m here, I can freely communicate with people who, like me, by the will of fate, became hostage to the disease. Wonderful, kind nurses, friendly and caring nurses, qualified doctors, psychologists. They were the ones who became support in difficult times, they were the support and storehouse of knowledge given to me about how to LIVE with this disease, that HIV is not a death sentence and that there is antiretroviral therapy, thanks to which I currently support my immunity.
Afraid of stumbling into general discussions, I’m still trying to find words for a confidential conversation with children. I hope they accept me with my pain. Now I know that HIV infection is not transmitted through everyday contact and I will do everything possible to avoid putting anyone at risk of infection.
A short novel, followed by a play of shadows of illness...
But, I am strong, I will not give up, I love LIFE in all its manifestations and am grateful to the Almighty for it.
HIV: A STORY OF ONE INFECTION
Everyone knows that HIV infection is quite common, but for many this information remains abstract and has nothing to do with them. Today we will tell the story of one girl who suddenly found herself “on the other side of the barricades” - she found out that she was HIV-infected, and this diagnosis changed a lot in her life.
According to UNAIDS (the UN program for the study and fight against HIV/AIDS, in 2013 there were about 35 million HIV patients in the world; during the same year, another 2 million people were added to their number.
Of course, everyone understands that this is a serious problem, but gradually the topic of HIV has become overgrown with a large number of myths and prejudices - so many people think that infection threatens only those who lead an immoral lifestyle. In fact, the stories of infection vary, as does the attitude of doctors towards patients with HIV.
Olga:I found out about my diagnosis by accident - Kamil Rafaelevich Bakhtiyarov was supposed to operate on me, before that they always take standard tests, when the results came - it turned out that I had HIV. When Kamil Rafaelevich announced this diagnosis, I left him with the feeling that I was dying, it seemed that I would not make it home - I would die on the way. Later I remembered that the results of the HIV test were not available for a long time, but this did not alarm me. I led an absolutely normal lifestyle, I had one man, I didn’t inject drugs, so it never occurred to me that I could be a carrier of HIV infection.
Then I thought about how the infection could have happened, the only guess was during an emergency operation that I once had abroad, when I had an acute attack of appendicitis.
They didn’t take any tests from me, and I wasn’t interested in how well the instruments were processed - I had no time for that, I had a high temperature, I lost consciousness... And after the operation I felt good, except that I started to get sick more often, but I I always didn’t have the best immunity, so I didn’t pay much attention to it. By the way, most of the girls I know with HIV also learned about their diagnosis before surgery or during pregnancy, and they became infected, in most cases, from their men, who had no idea that they were sick. In general, the virus can be in the body, but not manifest itself in any way for a very long time; you can live with HIV for 10 years and not know anything about it.
What is HIV
HIV is a virus
human immunodeficiency, affects the cells of the immune system, as a result it ceases to cope with its functions, and the body’s defense against infections weakens .
AIDS (acquired immune deficiency syndrome) gradually develops - at this stage, secondary diseases arise; normally, immune cells prevent their appearance, but in the presence of HIV, the body is no longer able to resist. The immunodeficiency virus belongs to the so-called slow viruses (lentiviruses), that is, having a long incubation period. It is depicted as similar to a depth charge used against submarines. On the surface of HIV there are glycoprotein “mushrooms” - with their help, the virus “hacks” the body’s cells, integrates into them and begins to multiply. The device of HIV is quite primitive, however, it successfully penetrates more complex cells and uses them for its own purposes. HIV uses some types of immune cells for reproduction, others - as a reservoir, in them the virus can be stored for a long time in an inactive state, in this case it is invulnerable to antiviral drugs - this is one of the problems in fighting the disease, the virus is also constantly changing.
Today, most research is aimed at developing drugs that block the virus at the stage of invasion of the cell - this direction is considered the most promising.
Olga:Many people hide their diagnosis because people do not know what HIV is and they think that they can become infected simply through communication. I myself was not aware of it until it affected me personally. Many doctors also react inadequately. For example, one girl I know with HIV told me how she gave birth in the Ryazan region. She learned about her diagnosis while she was already pregnant, when the time came to give birth, she went to her place of residence, she was accepted, but through the back door, the doctors looked more like astronauts - in sealed suits, their faces covered with masks. She was placed in some special, separate box... In general, there was a feeling that she did not have the human immunodeficiency virus, but, for example, the plague. That is, some terrible disease transmitted by airborne droplets. In reality, this is, of course, not true, and competent doctors know that HIV is transmitted only through blood or secretions. There is, of course, the expression “plague of the twentieth century,” but it is figurative, describing the prevalence of HIV, and not the fact that you can become infected by touching a person. But, unfortunately, some doctors behave as if it is a plague in the literal sense.
How is HIV transmitted?
There are many myths about human immunodeficiency virus infection. In fact, most of them have nothing to do with reality. HIV can be transmitted through unprotected sexual contact (vaginal or anal), or through oral sex with a carrier of the virus; with blood transfusion containing HIV; when using contaminated instruments (needles, syringes, scalpels and others). The virus can also be transmitted from mother to child during pregnancy, childbirth and breastfeeding.
Olga:Most of my friends with HIV are afraid to go to doctors at the clinic, because most often the reaction is inadequate. And private clinics, having learned about the diagnosis, begin to inflate prices. In addition, many doctors are afraid to accept such patients, since it is believed that they require some special conditions. But, in fact, it is enough just to carefully follow the standard sterilization rules. This was not the case with Kamil Rafaelevich; he operated on me as we planned. True, this happened about six months after I found out about my diagnosis. It took me this time to adapt and understand that I need to move on with my life. Moreover, not only me, but also my family had to get used to it, because it’s hard for them too, everyone I dared to tell is worried just like me - my parents, my husband...
In fact, this is very scary, but if you are faced with this, you should not despair, you need to pull yourself together and go to therapy. The first stage of taking medications was very difficult for me, my body rejected them, I constantly felt sick... But then it got better, now I take therapy, lead a normal lifestyle, work, I have hobbies, I can have children...
Peculiarities of operating on HIV patients
Kamil Bakhtiyarov: Women with HIV infection are patients just like everyone else. I see no reason why they could be denied surgery; the doctor’s task is to do everything possible to cure patients, regardless of whether they have any viruses in their blood or not. It’s strange to even discuss this, and it’s even more surprising that some doctors refuse to operate on HIV patients or are wary of them. Naturally, during such operations it is necessary to follow some rules: the doctor must put on two pairs of gloves (special chain mail gloves that protect against cuts and punctures, and ordinary rubber ones) on his hands, two medical masks and safety glasses on his face. In addition, today many operations are performed enoscopically (that is, through a small incision, using an optical device), in which case there is practically no chance of infection at all.
Since the first case of HIV was reported in the UK 30 years ago, the lives of people living with HIV have changed dramatically. Let's read six amazing true stories, from survivors of the 1980s HIV epidemic to a 60-year-old mother who recently learned of her diagnosis.
If you have HIV, let these testimonies encourage you, if you are afraid of contracting HIV, then let these stories help you see the real life of an HIV-positive person, that not everything is so scary and that you have a more balanced attitude towards HIV infection, do not panic and do not be phobic without a reason.
Lives in London with his partner. He was one of the first people diagnosed with HIV in the UK.
"I don't know how I survived": Jonathan Blake at home in London. Photo: Antonio Olmos for the Observer.
The only thing that kept me from committing suicide, no matter how absurd it sounds, was the thought that someone would clean up the mess in my room, this thought was unbearable for me at that moment, but it is interesting that it was precisely this that kept me from tragedy . It was 1982, I was at my doctor's with my glands so swollen that they hurt even when I shook someone's hand.
The test showed that I have HTLV3 (the original name for HIV). At that time, there was all this alarming news coming out of the United States about a mysterious disease - that it was HIV infection - a terrible and deadly disease. If I can't kill myself, I thought, then I'd better end this virus.
The doctors wanted to put me on AZT. It later turned out that AZT is an ineffective chemotherapy drug. I refused it because... I didn't trust pharmaceutical companies... and still don't.
But it’s possible that quitting AZT saved my life. I saw a lot of people die, both from HIV and from drugs. In the depths of my consciousness I kept pounding: “What difference does it make, I’ll die soon anyway.” But I conquered myself and move on with my life.
Shortly after my diagnosis, I met my partner Nigel. Then I contacted an organization of people with non-traditional sexual orientation. I thought the story of what we did, raising money for the mining families of Wales, was buried. But a film about this (“Pride”) was released last year. I love the way my character [played by Dominic West] is portrayed: he's not a victim or a tragic figure: "HIV is just part of who he is."
I went without medication until 1996 and then tried different regimens until I found the one I'm on now. My health is not ideal, but 30 years have passed since that time, and I am still alive! I don't know how I survived. The funny thing is that I am not at all bored in my life with HIV, I always have a lot of amazing adventures!
May the hand of the giver never fail
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Lizzie Jordan, 33
The diagnosis of HIV infection was made in 2006. Lives with his 10-year-old daughter.
My only point of reference was Mark Fowler in EastEnders: Lizzie Jordan. Photo: Antonio Olmos for the Observer. I had been with my partner Benji for four years and our daughter Jay was just 13 months old. One day Benji came home feeling very bad. We thought it was just sinusitis, but four days later he died.
I have never encountered negativity or stigma. I think this is partly because I have always been open with people about my HIV status.
A post-mortem examination showed that he had something that had destroyed his immune system. It was something like HIV. I was soon examined, as was Jay, who I was still breastfeeding. Her result was negative. Mine was positive. At that moment I was in shock. My only point of reference was Mark Fowler in EastEnders (Fowler is a fictional character in the British soap opera). But I'm a mother, and I had to think about Jay, so I had to move on with my life.
Although my first thought was to hide my diagnosis from everyone, I understood that there were women Benji had slept with before me who should know that they could have contracted HIV. Therefore, I decided to be as open as possible and not hide my diagnosis as much as possible. It's hard to remember, but his family refused to believe he had AIDS. Some of them even accused me that it was I who infected him.
This was eight years ago. Today I am happy, I feel healthy and I do not have a single symptom of HIV infection. I started taking medication last year and it's just one pill a day.
Jay is now 10, and I told her age-appropriate things. We started with a simple one: “Mom has bugs in her blood.” Now she understands much more.
I've never encountered any negativity, which I think is partly because I don't hide my HIV status. I've dated other HIV-positive people, but recently met an HIV-negative person through Twitter.
My profile says I write for a “bad” magazine, but I had to make sure he understood what that meant. He passed the test, he knows who I am. It's such a relief that it doesn't matter to people whether you have HIV or not, but there is still a lot of work to be done in this area to overcome the stigma.
Steve Craftman, 58
Lives in Wales. He was diagnosed with HIV in 1987.
“I experienced a lot of grief”: Steve Craftman. Photo: Antonio Olmos for the Observer. In my opinion, there are three faces of the epidemic:
- newly diagnosed HIV-infected people who intend to lead a normal life, follow all doctor’s instructions, and take care of their health;
- those who have maintained their health since the early days - the 80s and 90s;
- and there are people like me who survived, but with a lot of health problems.
Back then we were given a maximum of five years to live. I made it through, but I have a lot of health problems, mostly due to the medications I took. I have osteopenia* [pre-osteoporosis stage] in my ankles and hips, which means that when I ride a motorcycle I am very afraid that I will fall and my bones will break.
*Osteopenia is a physiological condition characterized by decreased bone density, which leads to weakened bones and an increased risk of fractures.
No one is to blame for these complications - the doctors did not know what they were dealing with, and the drugs had a lot of side effects. You could say that I fell from the tree of side effects and hit every branch as I flew.
I have experienced a lot of grief and lost many friends and lovers. It's not easy and I feel very lonely. In America they came up with a name for my condition: AIDS survivor syndrome - a bit like PTSD*. I'm still alive even though almost 30 years have passed. Am I a tough nut to crack? Not really. I think I was just lucky.
*Post-traumatic syndrome or post-traumatic stress disorder (PTSD) is a holistic complex of symptoms of mental disorders that arise as a result of a one-time or repeated external super-strong traumatic impact on the human psyche (violence, constant nervous strain associated with fear, humiliation, empathy for the suffering of others, military action , natural disasters, etc.).
I have experienced many of the consequences of prejudice over the years. I lived in Bristol 10 years ago with my partner John. They shouted at us and insulted us; someone broke our car. The police advised us not to pursue him - they said we should move on. We settled in a tiny village in Wales, where we were better received than in the city. John died there of AIDS in 2007.
I do not hide my status from others. Recently, at a hospital appointment, the doctor asked if I was hiding the fact that I have AIDS? I turned around and showed her the biohazard sign I had tattooed on my neck last year. “I realize the answer is no,” she said.
Biohazard sign. Image: florenceinferno.com. Matthew Hodson, 47
Lives in London with her “husband”. HIV was discovered in 1998.
"If I can't be open about having HIV, who can?": Matthew Hodson. Photo: Antonio Olmos for the Observer. I was tested for HIV in 1998 after the effectiveness of combination therapy was reported at the International AIDS Conference in Vancouver. I think the reason why I ended up there was that I needed to know for sure that there was already some kind of working treatment option before I needed it myself. And I was right...
Back then they said that HIV could take away five or ten years of a person’s life. Now the life expectancy of an HIV-infected person is no different from that of an uninfected person: it is now called “life-changing” rather than “life-limiting.”
I took this very seriously, I even stopped having sex for a while, I felt dirty and sick. But everyone has their own destiny. And after I imagined all the worst-case scenarios, especially that I wouldn’t even live to be 50, I pulled myself together.
I often speak with young people who have recently been diagnosed. They think they are losing everything, including themselves, like Tom Hanks in the movie Philadelphia.
Starting a new relationship was very difficult. I have a lot of other positive aspects than a positive HIV test, but I see that for some people it is almost vitally important: whether I have HIV or not.
Luckily, I'm now "married" so I don't have to worry about disclosing my diagnosis. If I were single, I would immediately tell the person that I am HIV+.
I have a job, I'm safe and I'm comfortable - if I can't tell about it in advance, then who can? In a way, it's my responsibility.
As part of my work as director of the special men's health charity GMFA, I often speak to young people who have recently been diagnosed. They think they are losing everything, including themselves, like Tom Hanks in the movie Philadelphia.
We need to remember that all of these images are now part of history, but there is still a lot of negative information surrounding this topic. This is due to the fact that HIV is mainly transmitted through sexual contact, and it often affects particularly men.
There are still remnants of deeply homophobic attitudes in this country (UK). They are no longer dominant, but they are difficult to completely suppress.
It's scary to look back. If you were a special young man in the mid-80s, you would have suffered losses comparable to those who survived the First World War. I knew 30 people who died during this period, but many other guys knew many more.
Joe Josh, 66
Lives in Reigate. Diagnosis made in 2008. I have a 25-year-old daughter.
“I became a kind of pin-up model for the topic of aging with HIV”: Joe Josh. Photo: Antonio Olmos for the Observer. The presence of HIV infection draws certain associations in people's minds. Most infections occur through unprotected intercourse, and for many people this means there is something nasty about it.
I hate the word “disclosure” (of diagnosis). I don't feel like I have to "reveal" if I don't want to. I didn’t tell my daughter about my diagnosis until I came to terms with it myself. She was 18 at the time and I was shocked. It took a couple of years to accept the situation. Let's start with the fact that you know little about HIV, how much better the medicines are today than before. Then you begin to understand that everything will be fine.
I simply do not fit the role of an HIV-infected person: female, 60 years old, middle class. Some people in my class cannot come to terms with HIV: “we are not drug users.”
I came out (disclosed my diagnosis) on BBC News, where I spoke as a spokesperson for the HIV charity Body & Soul. After that, my phone didn't stop ringing.
My friends supported me, but too emotionally. Many of them told me in a voice beyond the grave that I was very brave. “No, really, I’m fine,” I answered, and sometimes the answer was only deathly silence.
I simply did not have the right to have HIV: female, 60 years old, middle class. Some people can't handle it. I don't need medication yet and sometimes I feel like a fraud. I became a kind of pin-up model for the topic of aging with HIV.
I'm not talking about how I got infected. It's starting to become a bit of a soap opera and I'm more interested in being open about living with HIV rather than how I got it. This is the only way to change people's attitudes towards HIV-positive people.
Becky Mitchell, 40
She has been living with HIV since 2012. Lives in Bristol.
“There's nothing shameful about it. Only crossed paths with some selfish bad guy once.”: Becky Mitchell. Photo: Antonio Olmos for the Observer. I can’t say that I was particularly delighted when I was told about the diagnosis, but I wasn’t discouraged by this information either. As part of my work at the Environment Agency, I saw many people living with HIV, such as our former Chairman, Lord Chris Smith, a well-known HIV-positive person. He always seemed so active. I thought: maybe in our time not everything is so bad.
I took an HIV test after finding out that my partner was HIV positive. He decided not to tell me about it. So that was the end of our relationship. I didn't have any symptoms and I was actually only infected two or three months ago.
The number of mine that are fighting the infection] is still at a safe level. Drugs are not usually prescribed at this stage, but I volunteered for a clinical trial that required people with a good CD4 count and low viral levels, so I take one tablet a day.
Due to taking medications and taking very good care of my condition, my health is in perfect order. True, now I’m more careful: before I demanded too much of myself when I played sports, now I allow myself to relax.
Being open about my HIV status is really important to me. There's no shame in this. I'm a normal woman - I didn't do anything wrong. Only once did I cross paths with some selfish, bad guy.
This can happen to anyone and I want people to understand that. The only place where I encountered stigma (stamp, label) was in the healthcare system. I was in a bicycle accident and a young doctor asked in front of my mother if I was an intravenous drug addict. I was shocked! This is simply ignorance, lack of education and medical ethics.
I don’t physically feel HIV, but HIV became an alarm bell in my life. I feel like I may not have long to live, so I don't want to waste time on little things, but rather enjoy the time I have left and do something truly important.
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