Gohar, Armenia, 46 y.o. “I was constantly afraid that I might infect my son with TB”

Tuberculosis changed my life dramatically. Although initially everything was going well. I was born in Yerevan into a family of a chauffeur. My mother was a teacher of Russian, and I had planned to follow in her footsteps, but in my third year at the Pedagogical Institute, I realized that I definitely did not want to be a teacher, but it was a shame to give up my studies, so I graduated from the institute.

I got married at 19 and had a son. After the institute I went to my husband who worked with his brother in Belarus. Armenia is not a rich country, there is no oil, no gas, no jobs there. I liked Minsk very much, a clean city and nice people. But my life was not so good: my husband did not work, he was drawn into a bad company, started using drugs…

I had to raise my son, pay the rent, but I had no registration, so I couldn’t work officially. So, I started baking cakes at night. Who taught me? All Armenian women can bake and cook! Every morning I used to take 200-300 cakes to the market and hand them over to the vendor. The money was small and the work was hard.

In 2000, my husband was diagnosed with hepatitis. As he had an Armenian passport, he was admitted to the hospital using his brother’s Belarusian passport. A week after he was discharged, he received a call. It was from the AIDS centre. I understood everything at once… On the same day I went to take tests and received the test result – I turned out to be HIV-positive too. I don’t even want to remember that day. We bought tickets and returned to Armenia in 2000. My husband stopped using drugs. I went to the AIDS centre to have my child tested. Luckily, he tested negative.

ARV therapy was not available in Armenia until 2005 so we were on experimental treatment. One day, my husband suddenly had a fever and we thought it was an adverse reaction to the drugs. But it turned out to be a latent form of tuberculosis. Because of his weak immune system, the pills were not working for him. My husband lost a lot of weight and died after a while.

In January 2005, I got sick with pulmonary TB. I felt very bad. A doctor from the AIDS Centre came to me and told me that ARVs were available in our country. I started taking ARVs and TB medicines. I spent two months at the hospital and then I had to take pills for six months.

At the AIDS Centre, I got to know a specialist NGO and started working on a Global Fund project. I had a good salary, travelled halfway around the world, bought a flat and did renovations. Then, in 2012, my son was drafted into the army, which meant there was a risk of him being involved in military conflicts. I gave up everything and left with him to stay with a friend in France in September of that year.

I had to find a way to settle there. My friend advised me to say I was sick so that I wouldn’t have to stay on the street. I don’t like lying, but I had to. I went to the hospital and described the symptoms I had during the TB. They took a chest X-ray, diagnosed me with TB and put me in an infectious disease’s hospital. I was in the hospital for 10 days, they told me that I had drug-sensitive TB and prescribed treatment. I called my doctor in Armenia, who had studied in England and knew that they were afraid of TB in Europe; they were too cautious. She said I did not need to take medicine.

I applied for asylum.

In December 2017, we went to the Alps with my friends, I started coughing a lot, I thought it was the air, and in January I went to the doctor. I had a CT scan, but they didn’t look at the results straight away. I didn’t see my infectious disease doctor until August. When he saw my scan, he said that I already had a hole in my lungs. The tests showed that I was a risk to other people, and I was living with my son.

The doctors said that I had not had a relapse, but a drug-resistant reinfection. I didn’t take anything for a month and a half, then I was finally treated.

While at the hospital I found a theme group on VKontakte (social media platform), and there I wrote about my story: that I had fibrosis in one lung and a tuberculoma in the other, but the French doctors thought they could not remove them. There were doctors in the group and they said I should have the operation. My family showed the scans to the doctors in Moscow and they confirmed that I needed an operation. And after the CT scan, I no longer trusted the French doctors.

I got a visa to Russia. They operated on my tuberculoma in Moscow. I felt better, the tremors in my legs disappeared, and I resumed taking my medication. Two months later I was told to come in for an operation to remove the fibrosis. In the middle of March, the whole world was closed for quarantine, so I had my second operation only in September. After the operation, the doctor said: “Thank God for your character and perseverance for not listening to anyone and having the operation, because there was a time bomb under the fibrosis.” During the operation it turned out that there was a buildup of pus.

I will soon stop taking pills, but TB has put big restrictions on my life, and I have serious side effects.

I never told anyone about the disease. The only people who knew about it were my closest friends, and the people I travelled with in the Alps. They had small children and I described the situation to them so that they could be examined. Luckily they are all fine.

I have no regrets about moving to France. Unlike in the CIS (Commonwealth of Independent States), here the state thinks about you, and I now receive a disability pension.

I am very thankful to this group in VKontakte. Support for TB patients is a very important thing. There are volunteers, doctors, and phthisiatricians there, and if something is bothering you, you can always ask questions.

The only thing is that I am always afraid of getting infected myself, or infecting someone else. If a person is coughing, I step aside. What if…discriminating is one thing, being careful is another. I had been infected by someone else, and there were no people from the street in my social circle. So, someone I knew had TB and walked around with it. In France it is stricter. They told me straight away that if I leave the hospital, they will report me to the police, because I am a danger to other people. That is why in our whole district only two people take TB medicine, and one of them is me.

Recorded by Ekaterina Ivashchenko
Illustrations by Alexander Nosov