The story of a person with HIV on how to learn living a full life
Olesya, a peer counselor, has been living with HIV for 19 years already. She entered the new profession open-faced. She believes that silence can be more lethal than the virus itself. She shared her opinions with the RIA Vostok-Media journalist.
The very concept of a “peer” counselor implies an open dialogue with a person who is exposed to an infection. This practice has is incredibly promising, and the doctors of the Primorsky AIDS Center themselves recognize it.
“Honestly, I had considerable chances to get infected. Yes, I do not conceal that I had been a drug user with a long experience of use. My story is much like the stories of millions of other people like me. I found out that I was pregnant and quit using drugs, but, apparently, it was too late. When I found out about HIV, the child was already 9 years old. I decided to take up a part-time job, and when passing the medical examination, I was diagnosed with HIV. Of course, the child was examined and also found to be HIV-positive”, Olesya tells her story. “By that time I had already give up bad habits, but the consequences hit me hard so suddenly after many years. Of course, I was scared for myself and even more so for my child. At that time not so much information was available, and they told me directly: we do not know how long you are going to live”.
Olesya was lucky: a few years after she learned about her positive status, the era of medicines (as doctors call it) started. Approximately in 2005, all infected people began to receive a full set of necessary medications for free. HIV was not considered a death sentence anymore, and cases of AIDS have become less and less frequent.
I had been literally burying myself for almost two years, I attended church and wore everything black, but for some reason I did not manage to die then. I blamed myself for the fact that my child was infected because of me. When this burden became unbearably heavy, I decided to go to the AIDS Center. But for a long time I was scared of psychologists, I thought that seeking a psychologist’s consultation was the shortest way to a madhouse”, Olesya says. – “Then they suggested that I can become a peer counselor. I have been trained properly and now I try to help those who bury themselves as I once did. Of course, volunteer counseling is not a substitute for the professional psychologist’s assistance. But the well-fed cannot understand the hungry. It seems to me that it is easier for people to open up to those who were in a similar situation. We are therefore called peer counselors.
“The peer counselors service is a huge step forward. We could not have even imagined something like this at the epidemic onset, when we were close to concealing the names of patients even from each other. Many of those who learn about their diagnosis come to us with the problem of failing to accept themselves after getting infected. We explain that they did not become worse. They have not changed. They’re still the same. When they see peer counselors who have been living with HIV for many years and who are not going to die right now, their attitude to the situation changes drastically, – Yelena Voitovskaya, psychologist of the regional AIDS center, comments. – “25 years ago, when we were just starting to work, HIV-infected people really considered going to a psychologist to be a straight path to the madhouse. Today we have another tactic, and the first person to attend a person with diagnosed HIV is a psychologist”.
A meeting with a psychologist for “newcomers” is obligatory. The work of the AIDS center is organized in such a way that a person has to visit the psychologist’s office before being referred for the therapy prescription. At this moment it is important to establish contact with the client. In practice, 99% return to the specialist’s office again to discuss the common questions about their lives.
How to get acquainted? How to disclose the status to a close person? Will the family accept them? We suggest attending the counseling session with a partner or even the whole family”, says Aleksandr Lesnichenko. – Most often we manage to get the things addressed without grave consequences. Much depends on the relationship in the family, and if the family is strong, no diagnosis will destroy it. I have always said and will emphasize again and again: true love does not depend on the diagnosis. Everyone can get sick and, probably, if it’s a family member, it’s more important to support them, because they themselves are very frightened. By the way, close relatives do not always interrogate where and when one had contracted the disease. They just somehow let it go and live on. We are all adults and understand that everyone can make mistakes.
Olesya believes: her story has just begun. For 20 years of HIV-positive life, her life has really changed for the better.
I am a mother and a grandmother. I can raise my children and grandchildren. I can witness their successes, see how marvelous people they will become, what milestones they will achieve. When you find out about your diagnosis, this is the point of no return. My life is really split into two parts before and after the diagnosis. One analyzes everything that they were doing before. It became apparent how quickly my life was spiraling downward. I realized how I could ruin my child’s life. In my case, the diagnosis helped me to start it anew, give up addictions and do a lot, I hope, good deeds. In my self-help group, for example, dating profiles helped two couples to find each other. They are no longer alone in this world, nor they face their diagnosis at their own. When you think that tomorrow you will die, when you think that you see your family for the last time, time becomes particularly valuable. I will no longer waste it for dubious leisure and stupid things, Olesya says.
Yet, the experts do not harbor illusions: yes, almost everyone will have to take therapy. And, unfortunately, no pills to cure discrimination have been invented yet. No doctor can cure ignorance, but they can teach not to take it too close.
There were cases when HIV-infected pregnant women in the hospital were told to eat from dishes with the “H” letter written on the bottom. This is a blatant case of ignorance. And it happens in a modern medical institution. Once we delivered lectures in one of the children’s rehabilitation centers. Afterwards a nurse approached us and said “thank you”, as they had kids crying, and she was even afraid of stroking their hair”, Yelena Voytovskaya shares her experience. – This is absurd, of course, but the situation is like that. Once the children from the orphanage came to me for the examination and asked: “Dear Ms. doctor, tell them to allow us a children’s camp too”. As it turned out, the camp director banned these children from attending a leisure camp. There was also a HIV-positive man, whose neighbor was chatting about his status in the yard, and the man was forced to bring a medical certificate to the employer. And he asked to issue a certificate that he is HIV-negative. The employer did not have any reasons to request such a document.
Living with such a controversial diagnosis will never be easy. At least, for the first time. Both doctors and peer consultants are sure of this. As of now, 9,804 people know about their “positive” status in Primorye. The real infection rate in the population is two or even three times higher. It is not known when these other people will find out about their diagnosis. But they will always be able to obtain medical, psychological assistance and friendly support. And the sooner they learn about their diagnosis, the more effectively they will be able to use their time, which they will have plenty thanks to the modern medications.