TB & Me: "The hospital reminded me of some kind of a jail"

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16 May 2017

Ruslan is from Ukraine and is currently being treated for drug-resistant tuberculosis. He shares his story... 
 
I was diagnosed with tuberculosis a long time ago, the end of 2013. I started to wonder what was going on with me after noticing that I had lost weight and kept on losing it rapidly. Having received draft notice for ATO (ATO is the abbreviation which stands for anti-terrorism operation. The term “ATO” is used by Ukrainian government to describe the complex of military activities that take place in eastern Ukraine). I went to the physical examination and I was told – “You have TB”.
 
Before that I couldn`t even imagine that it had been tuberculosis. I thought I had a harmless cough which could be helped with warm tea. My mum and grandma were asking me to go for a check-up but I didn’t listen to them. 
 
After I had heard my diagnosis all I felt was disappointment. I wasn’t shocked. I knew that TB is curable. I didn’t have other severe symptoms besides the excessive sweating at nights. It happened to me that I woke up with my blanket cover all wet, and I was wet myself, as if the bucket of water had been poured on my bed.
 

Ruslan enjoys spending time in nature
This is me in the park. Photo: MSF.
 
I was not scared when I found out about the diagnosis. I just felt uncomfortable. Having been diagnosed with tuberculosis I asked about an appointment card for the tuberculosis hospital because I couldn’t just live and infect other people. Then I spent some time in the state tuberculosis hospital. This facility reminded me of some kind of a jail, as you always had to stay in the ward. I wasn’t often allowed to go out to the yard for a walk and then I had to be back. It was very difficult. 
 
I spent four months in the tuberculosis hospital. Different people could be found there, the group of people, I don’t know how to describe, but I felt myself uncomfortable among them. Former prisoners, drug-addicted people and many other different people could be found there. I was on the first stage of the disease at that time. I had been warned about the conditions of tuberculosis hospital. But what could I do? I had the open form of TB, which is when it is infectious. I couldn’t just live in society with the open form of TB and spread the disease. 

Sometimes I skipped taking medications. I was fed up with them.

Then I started having treatment as an outpatient. Sometimes I skipped taking medications. I was fed up with them. I was taking them for a week then I missed the next week. I thought that it wouldn’t take long for a full recovery, nothing wrong could happen. I supposed that I would get rid of the disease. 
 
I was tested after three months and was told that my tuberculosis became drug-resistant. I came to the understanding that it was not child`s play. After that I met MSF in the pre-trial detention centre and they lent a helping hand to me. 
 
When I was diagnosed with TB for the first time and people found out about it, the attitude towards me rapidly changed. I was avoided. People were telling something like: “It would be better if he didn’t go out to the yard.” There were a few who perceived it in a better way. The rest avoided me as a leper. The same goes for now – those who supported me didn’t stop doing that, I have a number of friends, the rest didn’t stop being cautious towards me. 
People are sure it won’t happen to them.
People are not completely aware of tuberculosis in Ukraine. They know that it is a terminal disease. That’s it. Besides that, they don’t have much information about symptoms, treatment; they don’t fully comprehend those concepts. It seems to me that most people just don’t want to be familiar with that. They avoid the information. They are sure it won’t happen to them.
 
But outpatient method of treatment is better anyway. You keep your mind peaceful, take medication and walk in fresh air. I adore nature and I like to spend time in fresh air. I am fond of fishing.

My primary goal in treatment was not to infect others

MSF helped me a lot. There is a big difference in the way they treat people. The main point is their attitude. They treat you with respect and provide proper care. You see, they come to the village, always checking on me, how the treatment goes.
 
I`m completely aware now, that I did a mistake, having failed to take medications on the regular basis before I acquired drug-resistant TB. Now I am absolutely sure that I should take all the prescribed pills on a regular basis – all 11 pills per day. My primary goal in treatment was not to infect others while, you know, going out for coffee, for instance, and that pleasure was made impossible with the open form of TB. Now I have the closed form, which is not infectious, and I want to fully recover. I want to kill this Koch's bacillus. This is the issue of primary concern for me right now. Regarding the future, we’ll see.
 
I want to go on with living, find a job, probably start a family, in order to have everything needed for happiness.