We have repeatedly told that HIV can affect any person, regardless of age, sexual orientation and any other life circumstances - for several years now experts have been proclaiming an epidemic in Russia. It is difficult to say exactly how many people with HIV live in the country today: official statistics only take into account data on non-anonymous testing in government agencies. Nevertheless, the European Center for Disease Prevention and Control considers Russia a leader in the European Region in terms of indicators - 71 new diagnosed cases per 100 thousand population in 2017.
The topic of HIV is surrounded by many stereotypes and myths - and people who have been diagnosed with the infection face discrimination. In addition to moral support, many people need medical and legal assistance - this is done by Maria Lapina, coordinator of the project "Medical and social assistance to PLWH" in the charitable public fund of medical and social programs of St. Petersburg "Humanitarian Action". We talked with Maria about the specifics of working with HIV patients and their relatives and how, while helping others, not to forget about yourself.
Interview: Irina Kuzmicheva
I used to work as a pub manager, sales representative, but I wanted to do something that would bring me more moral satisfaction than just making money. I was thinking of becoming a volunteer, and more than three years ago a friend invited me to the non-profit organization "Silver Rose". There I helped sex workers get tested for HIV. After two months of volunteering, she went to work for a paycheck. The salary, of course, was three to four times less than before, but in return I felt more calm and harmonious.
Unfortunately, communication with sex workers was not what I expected - many did not even say thank you even elementary. Out of inexperience, I wanted to save everyone - and I burned out emotionally, to ashes. And when you burn out, you won't be able to help anyone, because you feel sick from work. In this case, vacation helps: you take it and then either work further or quit.
So I went to Humanitarian Action. In November, we launched a mobile team of medical and social assistance to people living with HIV who, for health reasons, cannot take care of themselves. I am the coordinator of this project, as well as a social worker and a driver. Almost every day I visit my wards - they are officially “clients”, but it is closer and more pleasant for me to call them that. I take antiretroviral therapy from the AIDS center (it prevents the virus from multiplying in the body) and take it home. It happens that I sit for a long time in the department of social protection or the MFC, apply for disability pensions, benefits - there you can get stuck for five hours. At this time, I don't read a book, but also find something to do: I fill in the tables, answer questions by phone.
A team works with me: a psychologist, two infectious disease doctors and a nurse. Twice a week we go "to the addresses", that is, we visit the wards - from one to three per day. From time to time we leave with a nurse to take tests, in addition to HIV, our patients also have many opportunistic diseases (diseases that are not dangerous for people with normal immunity, but can pose a mortal threat to people with reduced immunity. - Approx. ed.). For many, this is important: most of them are lying, cannot leave the house. Many have lost touch with reality, because they did not start antiretroviral therapy on time, and this led to severe physical condition and mental difficulties. Unfortunately, more often than not, they are no longer able to return to normal life.
I don't have HIV. But many of my friends
HIV plus, and so is my wonderful husband. This topic is close to me: I know what difficulties they faced
and still face
There are those who, accompanied by a doctor, follow the doctor's recommendations, take therapy and recover. It is very nice. As gratitude, my colleagues and I are constantly trying to shove chocolates and cookies - but we don't take anything, we can't. And some refuse help. One of our first wards signed the necessary standard documents, and the next day she called and accused us of wanting to take her apartment. I had to return her papers and remove her from the escort.
I don't really get into the soul of my charges - again, there is a psychologist for this in the project. I can say one thing: the audience is very diverse, with completely different incomes and social status. HIV is not a “disease of the marginalized,” as is commonly believed. I don't have HIV. But many of my friends are HIV-plus, and so is my wonderful husband. This topic is close to me: I know what difficulties they faced and still face. Now, thanks to the work of activists, it has become easier in terms of discrimination and stigmatization; there was no antiretroviral therapy, and now it is available and is provided free of charge (in Russia, therapy is not prescribed immediately, but at a certain stage, given the number of CD4 immune cells and the viral load on the human body. before. - Approx. ed.). This is very important, because with therapy people with HIV live longer and can give birth to HIV-negative children.
We have one guy, a lonely young man with a disability. He weighed 26 kilograms and was dying of hunger. When we arrived at his place, it was impossible to look at his apartment. One room was completely littered with rubbish. He slept on the sofa under a blanket, without a pillow or bed linen. I brought him food - there is no one else. He was admitted to the hospital for two and a half months - during this time, the volunteers and I put things in order in the apartment, I issued him a disability pension and benefits. Will arrange a bath seat and mattress soon. It helps people understand that they have not been abandoned or forgotten. The situation with most of the people with HIV we work with and their relatives is very sad. Most often, they sit at home, in front of the TV or on the Internet. What else can they do? Everyday life is rarely adapted to the needs of a person with a disability.
The wards come to us in different ways: by a doctor's referral from the AIDS center or by calling themselves. On average, they are from 35 to 45 years old, the youngest is 25, the oldest is 82. The overwhelming majority are men. There are very few complete families. Basically, they take care of the wards of their mother - for me they are heroines. One ward is under fifty, and she has a wonderful son, who draws up the papers himself, and comes to the hospital to her. Another is supported by his daughter. Unlike them, other children simply do not. Those who are helped by their wives are few. The husband was with only one, she died in January.
Someone resigns themselves to the diagnosis, someone continues to deny. Few are fighting for life, simply because the majority are in a very difficult condition. Relatives of many wards are not even aware of the diagnosis: they know that a nephew or sister has a diagnosis and which does not. The wards themselves and their mothers hide this from them - they are afraid of stigma. Many mothers are so used to hiding the details of life from others that at first they are even afraid of us. In order not to compromise our wards in front of neighbors, we do not park our car at the entrance under the windows, and doctors do not go out in white coats.
Help is also important because there are practically no special institutions or hospices for people with HIV. Where are they? The mothers who care for them don't even have time to rest. When we arrive and take their already grown child to the hospital, it just gives them the opportunity to breathe out. It is important for mothers to be not only physically strong, but also emotionally strong. Someone does not lose hope, fights for the child and does not quite wave at himself - but there are emotionally crushed mothers, completely lonely.
I have no medical, psychological or legal education - I just went to the AIDS center for trainings on HIV and hepatitis. Algorithms of social assistance, such as how to apply for benefits, are not specifically taught anywhere - such things need to be mastered in practice. Now I have enough knowledge about HIV: soon, together with our colleagues from Humanitarian Action, we will give lectures on prevention to students of 22 St. Petersburg universities, and will talk about everything in an accessible language. We will conduct HIV tests on a special bus.
There are not enough employees. Now we are already dealing with forty-five people with HIV in serious condition - and there are only five of us. I would like to help more people, provide more diverse support. For example, neither we, nor the mothers of the wards physically can take the wards out into the street. Hopefully we will expand in the near future.
In a similar state, it may be
not only a person with this diagnosis - how many more people without HIV are also trying to survive?
At first it was very difficult morally. I let everything through myself, to tears, I had a wild codependency with several of those whom I helped. One of my first patients was diagnosed late, now he is not in the best condition, but he can sit. His father died of a stroke, his older brother died at work due to an accident, he only had his mother left. Such stories are terribly hard to watch, but it's not that HIV is the cause. Not only a person with this diagnosis may find themselves in a similar condition - how many more people without HIV are also trying to survive?
I have been going to a psychologist for three years now, and she helps me to correctly distribute emotional resources and understand where to set boundaries - otherwise you will immediately burn out. As our infectious disease doctor says: "Masha, their condition is not your fault." Of course, we are doing our best. Helping is cool, it also prevents you from burning out emotionally and professionally.
I turn on my work phone at eleven in the morning and turn off at eight in the evening. Previously, they called me at night - to tell about problems or inquire about services. I no longer do “I'm Mother Teresa” rescue when you pick up the phone at night or work on weekends. And while on vacation, I completely disconnect from all work processes, even though the grass does not grow. There is only one team, there is no second shift, but we have the right to two weeks of vacation every six months. We just do everything necessary in advance, and another employee answers the calls in my absence. I try not to forget that I have my own life, close people - you need to immerse yourself in work in a dosed manner so as not to forget about yourself. I love spending time with my husband, meeting friends, going out of town together or just having tea. Recently I had a hobby - I make wall clocks from plywood. It is important for me to save myself.
New acquaintances react to my work in different ways. There was no negativity, but, unfortunately, many have misconceptions about HIV, to the extent that it is allegedly impossible to shake hands with such people or drink from the same mug. But after my ten-minute lecture they say: “Cool! Well done!"
What I am doing today is like a balm to my soul. I just love this thing. I am in my place, I feel comfortable, despite the great emotional stress. I cope with everything - provided that I follow the recommendations of a psychologist and take pills for insomnia. It's not that I'm indulging my pride - that's what a fine fellow I am. No. I like to see people who, after two or three months, began to feel much better, and I know that my participation helped them. It is important for me that I am useful. I can give something: warmth, joy, a smile. Often, people lack even such little things.