Second interview by Natasha Sidorenko from the “Sincere Stories” series.
Tatiana Bashkatova from Irkutsk is a professor, Associate Ph.D., founder and director of the TAS Charity Fund for Support of People with Cancer, HIV, AIDS, Tuberculosis. From 2013 to 2014 she underwent treatment for susceptible pulmonary tuberculosis. Last year, Tatiana joined the TBpeople network, she searched for information on the Internet on associations and activists working with people affected by tuberculosis. Tatiana says that the community in this area is essential, because only together we can change something.
How did you find out about your tuberculosis?
In happened under sad circumstances, I suffered severe stress after an unsuccessful pregnancy. When the doctors told me that I have tuberculosis, I realized that this is not the disease of the homeless, as it is believed in society. I am still very much impressed that discussing the matters of TB is still considered embarrassing. Inner stigma in patients with tuberculosis is the same as in HIV-positive people, or even harsher. People are afraid of tuberculosis, I felt it in my own experience. My colleagues at work turned their back on me. People even were afraid to talk to me over the phone. It was so terrible – only two or three people from among my friends did not abandon me. And during the treatment I came to the conclusion that tuberculosis is not the disease with which you should try to cope on yourself, it’s the people that should pull you out of this illness. I am very grateful to my husband and parents, because without their support I would hardly be able to go through it. In the most difficult moments, when chemotherapy makes you nauseous all the time and you are just stretched in bed, staring at the ceiling and not knowing if you will make it till tomorrow, only the thought about your family support keeps you afloat. They used to tell me again and again, “It will all be over – we are fighting together with you”.
Do you face stigma now?
I have a sticker on my car with the words: “Cancer, HIV, Tuberculosis” (the Fund’s advertisement) and my neighbor asked why I wrote the word “tuberculosis” on my car. I said that I had survived tuberculosis and now I am combating it by creating the Foundation. He was surprised that I can speak so openly about this. He said his wife and his friend’s wife also had been ill with TB, but they conceal this, no one knows about this …
Here I am also struggling with this, so that it would not be embarrassing for people to talk about tuberculosis. Now a lot of people in Irkutsk are ill with TB and this fact should not be concealed.
Did you immediately tell the family and your loved ones that you have tuberculosis?
I did not make any secret out of it. Everybody knew about this. And now I even tell strangers with whom I meet, that I’m a living example of how one can overcome the disease. After all, many people hide it, I remember the feeling I was experiencing when I had not yet been diagnosed. Doctors said that most likely I had tuberculosis, but they needed a consultation to work out a treatment solution. And I remember that before the treatment I felt better than at the very beginning of treatment.
Have you had enough information about tuberculosis before? Did you have any information other that the belief that TB is the disease of the homeless?
You know, I did not read anything specially, because I made up my mind to cope with it. And then I was in the hospital and people in the ward were saying to me, “Do you know that there can be certain complications”? I asked them not to tell me anything. I was very determined to complete treatment. I talked to the doctors, and asked whether I’ll be able to give birth after treatment? They all told me that I will. And this was my goal, so I did not read anything.
How was your treatment going?
I stayed in the hospital for 4 months and then for several months I was treated in the outpatient mode. I obeyed all the doctors’ recommendations. I took all the prescribed drugs upon a precise schedule. Even sometimes I used to say that probably no one in the hospital wants to be cured so desperately as I wanted to. I remember how one day I vomited and I ran to the nurses’ office saying that I threw up the pills and asking to give me another dose. I really wanted to be cured and took the medicines 7 days a week, without missing a single dose. The drugs were given free of charge, but I bought the hepatoprotectors and vitamins at my own expense.
Did you have any difficulties?
Basically, these are side effects. Once there was a problem with transfer from inpatient to an outpatient department, one of the medicines was unavailable, but within a couple of weeks it was resolved.
And in your opinion, does everyone who has been exposed to TB, get infected?
Now I understand that no, not everyone.
Then and now, which of the most common myths and fears associated with tuberculosis do you come across?
I cannot say that something has changed in society for these 5 years. There is still a perception that this disease is something that will not affect you, it is something common in prisons or among homeless people. People think that it does not concern them. We ask people at events, “What do you know about tuberculosis”? They say, “Why do we need to know about it, it will not concern me”. The situation in the society does not change, I think that it should take a very long time and a lot of continued work. Recently we met with foundations involved in socially significant diseases response and said that there should be a person in our city living openly with HIV, but for some reason we do not have anyone. I live with the open face of a person who defeated tuberculosis and I can say that this is a disease of ordinary people. If you come to a tuberculosis hospital, you will see well-socialized people, well dressed, having decent jobs. And there are many such people.
What, in your opinion, can change the society attitudes to patients with tuberculosis?
People with open faces. People who have experienced this, telling live stories. The media should also change the attitude. It is very difficult for us to get visible in the media. If we offer the media to make an article about HIV and TB, they respond that they are not interested. It’s like something dirty, why would we need it, they say.
I know that for a long time Irkutsk was holding the first place in the country in terms of the spread of HIV, in terms of the number of people living with HIV. What is the situation now?
According to the 2016 data, Irkutsk ranks first in terms of infectious diseases mortality. This is AIDS and tuberculosis. We are on the second place in terms of the number of PLWH. Surely, there is nothing to be proud of. Among the new cases, 25% are people who use drugs, and the remaining 75% got infected through the sexual transmission. Among people aged 30 to 40, every 25th lives with HIV. And this, as you know, is only official data. And how many people still do not know about their disease? I belong to this age interval and I ask my friends: when did you take your last HIV test? They tell me that it was 6-7 years ago in some special situations, during surgery or pregnancy. That is, we do not have a culture of regular HIV testing.
How do you think, what factors affect adherence to treatment and what can be done so that people do not stop taking medicines?
Availability of medications strongly influence it. I mean both medicines for the treatment of the disease, and drugs that mitigate side effects. From the experience of PLHIV who come to our Foundation, I can say that they start taking therapy and, when side effects occur, they begin to question the effectiveness of these drugs. Sometimes people wonder why do they need to take these pills if they’re feeling well. In these cases, peer-to-peer counseling plays an important role. It is when people who have been living with HIV for 15-20 years share their experience through individual counseling or support groups.
What other programs do you have in the Foundation?
There are a lot of them, we help people, we raise funds for treatment. And we also have a program “Over a cup of tea.” These are meetings with a person who has lived with HIV for many years. “Over a cup of tea” means that we do not teach anyone, we do not call for anything – we just listen to people. If you need any help, then we assist, but in general this idea and the format “over a cup of tea” were not random. A girl came to us in the summer, she was from the village, she gave birth to a child and during pregnancy learned about HIV, she found herself in a very difficult situation. If she disclosed her status in her village, she would be beaten to death with stones. We said: come to us, we’ll have tea with you. She came, we had a tea, asked about her daughter, about the weather, chatted about ordinary everyday things. And when it was time to leave, she said, “Thank you very much, I felt so much better. I drank tea, we just talked about trivia, about life, and I know that you know that I live with HIV and that’s what makes it easier for me”.
And we realized, people need such simple things as the conversation “Over a cup of tea.”
How has your life changed since you completed the treatment?
My life has changed completely, and I live an absolutely happy life. I gave birth to a wonderful daughter. This happened almost immediately after the end of treatment. And the charitable foundation is my other child in a sense, it was born after I completed the treatment. When I ask my friends about their life, I usually hear – “It’s just like a monotonous pendulum – work-home, home-work.” It is important for me to have a fulfillment in life other than just work and at home. We have more than 20 volunteers in the Foundation, they are students. They are very active, always inventing something new. We constantly implement new actions, projects, creative search, work with challenging situations. I’m doing charitable work, helping people. It probably sounds grandiloquent of sorts, but when a person comes to us and seeks help, and we can help him, it actually inspires, gives strength.
What is your dream?
I have a dream to build a children’s hospice. It will be a hospice, where death would not be something terrible, it will help the children to pass away quietly and without suffering. I want to build a kind, caring hospice.
Interview was taken by Natalia Sidorenko, representing the TBpeople network in the expert group of the Regional PARTNERSHIP Program. The mission of the network is “To unite people, to defeat tuberculosis”.