Marina, Ukraine, 26 years old: “My parents and my husband knew about the disease but they did not know how to support me”

I now live in Poland and do not even want to remember what happened to me several years ago.

I am from Kirovohrad, in Ukraine, and I am my parents’ only child. Following my father’s advice, I entered a medical college and became a paramedic. Then I worked as a school nurse and I liked my job but my salary was too low. 

When I was 20, I got married and started my second job selling internet and digital TV services. I worked from dusk to dawn. My husband also worked long hours. After a year and a half, we realized it was time for change, and in 2015 we went to Poland to a town called Zielona Gora to earn some money. We knew that in the beginning we would have to engage in some manual labour. I got a job as an assistant cook in a café. My husband worked at a factory. We did not earn much and lived in a terrible dormitory, but we knew that it was just a start and we just had to live through this period of our lives.

Six months after we came to Poland, I started coughing. Fortunately, I had a legal job and health insurance. I went to see a doctor and he said that I did not have to worry, it was just my nerves. The cough continued, so in a month I went to see another doctor and he prescribed me some drops. I felt worse. It was only the third doctor who told me to have an X-ray and, after receiving the result, referred me to a lung specialist. I was not able to read the medical report but was scared as I saw a blackening on my X-ray image, so I asked a colleague of mine to translate the diagnosis for me. It was tuberculosis and I was shocked to hear it. When I saw the lung specialist, he confirmed the diagnosis and referred me to a hospital in a neighbouring town as it was the only place to treat tuberculosis. 

I spent 10 months in a hospital, where I received care free of charge thanks to my health insurance. I was taking first-line drugs, which failed to help me. After two months, doctors found out that I had drug-resistant tuberculosis. Suddenly, I faced another problem – there were no appropriate medicines in the hospital and I had to wait six weeks for them to be brought from the USA and France. Luckily, there was another patient with the same form of tuberculosis, so in the beginning his medicines were shared with me.

When I took the medicines, I had severe side effects, I felt like I was going crazy, not to mention all the physical pain. I was depressed, could not walk on my own, I was losing my hearing and eyesight. I had hallucinations and told my doctor that maybe I had to go to a mental health hospital.

In addition, I felt an aversion to food. Fortunately, when I took my first pills, I gained 13 kilos but I was gradually losing this weight.

Back then, I received a lot of support from participants of the VK group. There, I met other girls who had the same side effects. We were writing and calling each other and together it was easier for us to go through it. Of course, my parents and my husband knew about the disease but they did not understand what I felt and did not know how to support me.

When the Polish doctors completed my treatment, I realized that I had to continue taking it for at least another six months as I still did not feel well. I went through a lot, so I wanted to beat my disease for good. At that time, I did not fully trust my Polish doctors. There were other doctors in my VK group, they knew which treatment regimens I needed and their opinion was different from that of my Polish doctors.

In 2017, I came back to Ukraine after completing my treatment course in Poland. When I saw a medical professor in Kyiv Pulmonology Institute, he prescribed me another eight months of treatment and a surgery to remove my tuberculoma. I took pills and went through with the surgery, then my parents sent me to a sanatorium, and only after that I felt better.

Those are two sides of the same coin: free treatment with my health insurance in Poland, with wonderful hospitals and good food, but with tuberculosis being a rare disease, which doctors are not sure how to treat. On the other side is Ukraine with its bad hospitals and expensive surgeries, but with doctors knowing how to treat tuberculosis. The surgery in Ukraine cost me a lot of money, my parents and my husband had to pay for it. In Poland, my health insurance included compensation for severe diseases, so I got a big sum of money and I lacked nothing. In Ukraine, it is not like that, but if a person from my home country gets sick with tuberculosis in Europe, it is better to come home for treatment.

What did my experience of tuberculosis teach me? I realized how important it is to find like-minded people and get support from someone who understands your disease. It seems that it is most important to get support from your family members, but they do not really understand how you feel. We live in a world of social networks, and groups in such social networks help people to cope even with such a severe disease.

Recorded by Ekaterina Ivashchenko
Illustrations by Alexander Nosov