Paulina Siniatkina (1989) is a Russian artist who lives and works in Amsterdam. In 2015, she survived tuberculosis (TB) and decided to devote her art to fighting TB stigma. Paulina works with painting, installation, video art and performance. Through her experience and work, Paulina has also become a TB activist. She has addressed the UN General Assembly on Tuberculosis in the United States and was one of the authors of the book ‘Tuberculosis and You’, that has been translated into 13 languages. Sitting in her studio in Amsterdam, Paulina tells how TB has shaped her art, her work as activist and her life.
“I studied at the Russian Academy of Art. It was a very strict institution. After I graduated, I got a bit lost. I had no idea how to really use what I had learned. I knew I could make pretty paintings, but didn’t quite understood the depth of what you can do with it.”
Low immune system
“At the time I was married, I was very young and it wasn’t a good marriage. In 2013 I divorced but I still had a lot of post-traumatic stress from the experience. I think that was why my immune system was low. By the end of 2014, I was coughing a lot, losing weight and feeling ill. I went to several doctors but didn’t receive a proper diagnosis. I did have the classic combination of TB symptoms: night sweat, fatigue, loss of appetite and coughing. But I wasn’t eating that much at the time, so not surprised that I lost weight. I was coughing, but was also a smoker at that time. I had night sweats but my temperature stayed around max 37.5 degrees.”
“The doctor had given antibiotics but they did nothing. I was getting so tired of feeling ill, that I even stopped believing in the medical system. I went to see some type of witch doctor who had given me powders to dissolve. Of course that didn’t help either, but I was just getting so desperate.”
“Even though I was feeling ill, I still travelled to the Netherlands in March 2015 to visit my boyfriend Johannes. I met his relatives and they remarked on me being so skinny and not looking too well.”
Wrong diagnosis
“In the beginning of April 2015 my temperature all of a sudden shot up to 40 degrees. I fainted and my mother called an ambulance. I was rushed to the general hospital, I was given antibiotics and fainted again. I was in a really bad state. Night sweats was an understatement, I was drenched in sweat at night. I received injections to numb the pain. I couldn’t walk. The doctors thought I had pneumonia.”
“In May there are always celebrations in Russia, so there also wasn’t much staff in the hospital: just a few doctors that had to run the whole place. I remember this image of a female blond doctor on high red heels. Whatever the doctor gave me, the fever still wasn’t breaking.”
‘Your daughter is dying’
“There were six other women in my room. All with different diseases. My mother was visiting me constantly, bringing me proper food and taking me to the toilet. In these hospitals it’s very normal that you have to bribe the nurses with money or chocolate so they help you a bit more. One of the women in the room said to my mother: ‘Look your daughter is dying.’ My mother paid money so that I could jump the queue and get a CT-scan. I was by that time mostly unconscious and people were already saying their goodbyes to me.”
“After they had done the scan, the doctor told my mother I either had HIV, cancer or tuberculosis (TB). He told her to pray it would be TB. A TB specialist was brought in. He took me aside in a corner and said: ‘You have TB, but don’t tell anyone.’”
No questions please
“An ambulance took me away to a TB ward on the outskirts of the city. The TB ward was a place of total silence. A doctor there looked at my X-ray and confirmed I had TB. I had so many questions, but no one wanted to answer them. The more I asked, the more angry they became. At some point a doctor yelled at me to just stop asking. Part from that there was total silence. It was a very strange place.”
“The doctors rated me as ‘3+’, which in their systems meant I was very contagious. I was put in what they called the ‘therapy department’. It was a separate building, completely at the end of the complex. Inside, it basically looked like a hostel for students but then with drop down counters from a hospital.”
A bubble of silence, fear and uncertainty
“In my chamber there were two other girls. We were all around the same age between 23-25. They had been there already a couple of months. They were nice, said hello but were also used to spending their time in silence. It felt like being in a strange a bubble. A bubble of silence, fear and uncertainty.”
“When I met with my treatment doctor, I again had lots of questions. I wanted to know how long I already had been sick. And whether I had to tell people I had been in contact with that I had been diagnosed. He said: ‘Don’t tell anyone or you’ll be branded for life.’
Support and stigma
“When Johannes came over to visit me, everyone in the ward was shocked. They never expected ‘the foreigner’ to come. He thought the ward looked like ‘the worst Soviet impression you can find in Hollywood movies.” On TB he had read all the information he could find.”
“His family here in the Netherlands was shocked about the what had happened to me. As many people in the Netherlands, they really thought TB was something form the past. His family has given me a lot of support and really showed compassion. My mother also came to visit me every day and was very supportive. But she also comes from a small village in Russia and really didn’t want anyone to know I had TB. My father was different. He was just really happy I had TB so that I could be cured and wasn’t dying. My aunt had a different reaction. She said that because I had travelled to Amsterdam before I collapsed, I must be a drug addict and that was why I had TB. Her views are quite stigmatizing, even though she herself had had TB when she was young. She didn’t want to come to visit me. I had told only a small circle of my friends that I had TB. They were very supportive and some came to visit me.”
Cold red liquid
“My time in the hospital was divided into different periods. The first three months I was fighting for my life. I basically had a hole in my lungs that needed to heal. The medication gave me lots of side effects: I was vomiting, had diarrhea and was hallucinating. My veins could hardly handle having an infuse anymore. And I really disliked the red stuff: rifampicin. Whenever the drip was opened, you felt this cold liquid going through you. I will never forget that feeling. Your body doesn’t want to get destroyed by the medication or the disease, so you really feel this fight going on in your body.”
“After three months, I started to improve. I received second line medications which also had side effects. They gave me injectables which had an effect of my hearing. I still can’t hear properly in one ear. They were also constantly changing the regimen. I wasn’t sure if they were experimenting or it was just a result of drugs stock-outs. It did not feel right. But no information or explanations were given. I also didn’t make myself very popular in the hospital, when I kept on asking: ‘What are you giving me?’ “
Emotional rollercoaster
“Another aspect of the whole experience was that you simply have stronger responses to everything. You’ve been so close to death that for instance you laugh more about jokes than you normally would. We also once managed to escape through a fence and we were walking in a meadow full of flowers. It was amazing. You just feel more alive because you have been on the edge. But I was also crying every day. And breaking up with Johannes every day. Or felt extremely depressed. It’s a complete emotional rollercoaster.”
Why feel guilty?
“After three months, I was no longer contagious. So I was allowed to leave the hospital for a weekend. My mother brought me to a ‘dacha’, which is like a little country house in Russia. It was the first time I really escaped the bubble. It made it possible to look at myself and the whole experience with a different perspective, with a bit more distance. I asked myself: ‘Why do I feel so guilty for having this disease?’ It was a breakthrough. I said to myself: I will bring canvasses. I will make an exposition. I became obsessed with the idea. It was a drive that kept pushing me forward. I was going to make paintings and I would do it together with my friends from the hospital. I’m not just going to tell a few people I had TB. I was to tell the whole world I had TB! My mother of course was horrified.”
The ward as studio
“When I was back in the hospital and told my friends my idea, they all reacted positively. At least the ones in my own ward. People from other places were less enthused. I asked the doctor if I could paint and she said: ‘Do anything you like, just don’t drink vodka.’ She thought I had meant little watercolors. I asked my friends outside the ward to help and they brought wood and canvas. I started making canvases from 1 by 1 meter. The ward became my studio.”
“Some people were worried they would get recognized from the paintings. My friend Marik was initially only ok with it as long as I didn’t paint his face. But then he changed his mind and agreed. He allowed me to take a photograph of him that I could use for the painting. Unfortunately we had a falling out before I could paint him. For a long time we didn’t speak to each other. When we finally made up and started talking again there wasn’t enough time: he died before I could paint him. Only years later, in 2019, did I finally make his portrait.”
“I feel so sad when I think of him. Marik was so stigmatized. He didn’t believe in taking the drug bedaquiline. Whenever they gave him that drug, he would hide it and not take it. He was afraid to die but even more afraid of taking this pill. And then he died.”
A celebration of TB
“With the friends who had agreed to be painted, we made a pact. We agreed that we would overcome this nightmare. We would not just tell people about having had TB, we would scream it at the world loudly together. And on the day of the exposition we would all get dressed up beautifully. This event that we were planning in our heads, gave us something to look forward to. A celebration that we were all going to go to, talk to people, make photographs, enjoy.”
“After seven months in the ward, I discharged myself. I wrote a note that said I would take full responsibility for my own risks. The doctors didn’t want to let me go. They said: ‘You will be back. You have to get operated. You will never be able to fly in an airplane like this.” But I didn’t believe them. Johannes also helped me. In the ward, we were all put together in the same space, no matter what type of TB you had. He said I should be careful that I wouldn’t get cross infection. He said: ‘Paulina, you should leave.’”
An exhibition to celebrate having overcome TB
“Johannes then brought his camera and we started filming a teaser for the exposition. We posted this teaser in November 2015. It was my first Facebook post on my plans and the exhibition. On the video, I told the story of what I had been through, how I had been fighting for my life. And that now I was cured and would be coming with this special exhibition.”
“Surprisingly enough, a lot of media was interested in the video and in the exhibition. We found a gallery, even though a lot of galleries didn’t want to be associated with TB. And then we finally had our event. We were all there. We celebrated together. The moment was 24 March 2016: World TB Day.”
“Talking about my TB experience has become my life. I didn’t choose to become a TB activist, I was cast in that role. Art is a great power to build bridges with. I believe stigma is one of the biggest obstacles in ending TB. I hope that by telling my story I can help fight TB stigma.”
The watercolour painting in the story is made by Paulina. She will be illustrating a book with ten patient stories for KNCV. The stories will be published on the KNCV website throughout the year.