[EN] The hole in the lung and the disease we refuse to talk about. My encounter with tuberculosis.

I wrote this article in 2016 for Dilema Veche. It has been read since then by thousands of people. Even now, in 2020, around 10 people read it every day, searching for info. Here is the English translation.

Tuberculosis. TB. Lungs, crappy hospitals, the elderly, the poor, my grandfather, cigarettes, coughing, non-sexy, precarious conditions, nothing comes to mind when I think of tuberculosis, I have to Google it, blood, bleah, stupidity. Some of my friends who don’t know I had tuberculosis answered me like this when I asked them to tell me what comes to mind when they hear this word.

7 years ago, just two months before taking the baccalaureate exam, I coughed up blood and ran away scared to the emergency room, thinking I had an internal bleeding and that it was only a matter of minutes until my death. I had no idea what was happening to me, and I had heard vaguely about TB, and I didn’t even know what this disease entailed. To me, this should only exist somewhere far away, in underdeveloped countries. Fortunately, there was no internal bleeding, because otherwise I would have died several times during the hours I waited for someone to consult me.

I had no idea that the incidence of the disease is at alarming rates all over the world, some experts fear a return of the disease that once killed one in four people, that Romania is in constant denial and of course, underfunding of the sector. The incidence of the disease in Romania per 100,000 people continues to be significantly higher than in 65% of the world’s countries, more than in Eritrea, Rwanda, Cuba and three times more than in Bulgaria (see data here). Harder than the handful of pills taken for 6 months, I felt the social pressure and the fear that I gave to someone else, my dear people, to anyone. Too many friends have advised me not to write about this experience because of discrimination — that I will not receive certain collaborations, that I will be excluded from certain groups, or that information will be used against me in the event of a return to administration.

In a country that generates a quarter of TB patients in the EU, where 1,100 people die each year and another 16,000 get sick, most of them young and active, having TB remains a stigma of poverty. To most, it is just a dry public health issue, often brought up in Government working groups, which I have organized on the topic of street people or various disadvantaged groups.

It’s kind of funny to hear how this disease is used to describe people in very vulnerable communities, and I admit that I could hardly refrain from telling my colleagues in other ministries, ‘Hello, I’m here, I’ve been sick and haven’t lived in a cave under the ground!”. I was a student at the best college in the county, I had been playing basketball for 3 years, I was playing sports, I took care of my diet and I had barely smoked, months before, secretly, like a teenager with many questions. I don’t respect the stereotype. There are many people for whom this disease has long risen among the poor, HIV-positive, unvaccinated, etc.

“Yes, of course, that’s it. How ugly it is on the x-ray! How did you get it?”, the doctor on duty asked me, as if I had drawn the winning lottery ticket. Then I burst into tears, now I would answer: “Thank you very much for this diagnosis, which two other doctors have missed in the last 3 months, treating me with countless antibiotics for flu and pneumonia. I thank them for the good time spent at the hospital for infectious diseases, under a misdiagnosis, in terrible conditions with 7 other people in the room, with a bathroom on the floor, with a single functional sink and a shower. The nurses are a bit upset: maybe because the only “bonus” I am offering is my smile. I know that this experience will help me over the years to be a better person and to thank myself more often for what I have. ”

So I dedicate this article, in which I say publicly that I was ill, to the third doctor in my story (the third time brought some luck). I dedicate these words to anyone who does a little more than they are required by their job description, just because they care. I dedicate a big thank you to Mihaela, through this article, after her death, because she always told me that shame is not for me, but for those who do not care. The one who helped me go to school and back, so that I could take my baccalaureate exam with my classmates and who was always very proud of whatever I was doing to help this society a little. She told me that we, my generation, would be able to change things, because otherwise it would not be possible. She once told me that this society also seems to be eaten by tuberculosis. I laughed, then, about 5 years later, I woke up working in public administration and I realized how right she was.

This parallel between having a body eaten by tuberculosis and the state of administration, as I see it, amuses me too, I have to admit. You don’t see the disease, but it makes you feel tired. You are no longer able to remember things well, you lose a lot of weight, you become unproductive and in the end you spit some blood. You realize that something is clearly wrong, so you go through some emergency investigations, much more expensive than prevention. You turn to other doctors, because the previous ones let you get here and you look reluctantly at the new ones. You realize that the medication / change takes some time and it is a bit painful, because the whole organism has to recover and adapt to the handful of pills (transparency / governance in the interest of the citizen).

It is painful to eliminate the disease from the body; it retaliates. When you have the official diagnosis, as a patient you can feel ashamed, put in the corner even if the fault for getting there is not yours. About the same with the statistics that show that Romania is the last in Europe in a lot of issues, including the incidence of this disease. It would be easier to pretend that you have nothing, to continue your life as before and to avoid treatment, but this certainly leads to death.

But if it is not palpable, here, now, ephemerality becomes too abstract a thing for our senses, and we are sure that nothing bad can happen to us. Is that so? Personally, I know a few former patients whose voices can be heard more easily — let’s do something with that voice!

Later edit: In the fall of 2018 I talked about this experience at TEDx Constanța.

Although only about 10% of those who come in contact with the bacillus get sick, the risk remains very high. For proper treatment, a patient must take complete medication, to rest. The treatment lasts from 6 months to several years. The disease affects both people in poverty and with a low level of education, as well as people with a high level of education. It’s true, disproportionate. I recommend http://features.decatorevista.ro/boala-tacerii, a very good article written by Laura Ștefănuț.

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