“I think we are most affected by stigma”
She’s only in the 12th grade. Rather than celebrate her coming of age, Vali shed bitter tears in the hospital, and she now holds her stomach whenever she hears the medication cart creaking in the hallway. 15 pills a day, one injection and two hours of nausea and dizziness, and above all, the stigma. “They label you as TB person, as if it’s your fault.”
From the joy of coming of age to the sadness of learning the diagnosis
She was about to finish high school. She was thinking of the graduation exams, but especially of her coming of age. She could see herself trying on beautiful dresses, glowing in the mirror, slim, bright cheeks rising between large brown curls. With her would have been, laughing, her best friend – two fairytale girls, happy that they turned 18. They planned to celebrate their coming of age together and that was an unshakable thought for Vali. Yes, she had been coughing for sometime and had a weariness, a “different than normal, endless fatigue”, the doctors wanted to hospitalize her, but that would not have ruined their plans. “Whatever I have, I can not miss her coming of age, I will not be hospitalized that day,” Vali said to herself.
On Monday there was the medical check, on Friday the coming of age party. She went to the check but not to the party.
“We had all beenbusy withthe graduation exams, we were alltired…ThenI startedto coughveryhard,Ithought it was a common cold.I wentto the family doctor, I followeda treatment but to no avail, thenI wenttoa private practiceanddid an X-ray. The doctor lookedatitandtold meI had to be hospitalized, but did notexplain why. On that Mondaybefore coming of ageI learned thatI had TB”.
“I’m still terrified when I hear someone coughing”
She sits legged on top of the bed in the ward at the “Marius Nasta” Institute of Pneumology in Bucharest, where she has been hospitalized for about two months, and holds her story in her restless palms. She says she thought of nothing when she found out that she had tuberculosis. “Yeah, sure!” jumps in her room mate, whom she befriended. “She wouldn’t believe it and cried a lot,” she insists and Vali gives in: “When I left the doctor’s office, after they said I had TB, I cried and I called my mum. Then I went to my sister’s and there I calmed down. I was down, I wasn’t thinking about anything.”
At first, Vali did not know much about TB, but it felt awful, she only knew that it was “a bad disease, something ugly and shameful”. “More than diagnosis, it frightened us what friends, colleagues, people would say. My family, too, was worried about it, they said not to tell anyone that I have TB, no one should know”, says Vali, her eyes flooded with tears. Later, when she learned that it’s not something to be ashamed of and that can happen to anyone to get TB, she chose to tell everyone the truth. “In my case, everybody knows. Some reacted well, others less than so. I told them all to get tested and, thankfully, none of those with whom I came into contact has TB. I was afraid, especially when I heard someone coughing. I’m still terrified when I hear someone coughing. ”
Disappointment and sadness
After she told her friend that she couldn’t make it to her coming of age party – “I was in shock, my mind was elsewhere” – she made her luggage, helped by her mother, and was admitted to the local hospital. “In the room there were only old people, it was depressing. My room colleague from here was also hospitalized there and she was the only young person there and so we became friends,” said Vali.
For three months she was hospitalized in her hometown, and then she remembers she was told to come to Bucharest, “for two weeks, for some tests.”
Meanwhile, from home she has heard of some “bad things, not related to the disease.” Looks at her hands, thinking elsewhere. She is 19 and the dozens of drugs she takes didn’t wipe the pink from her cheeks. Only sadness shades, occasionally, her eyes. For instance, doctors in her hometown lied to her. She thinks so, that they lied. “It took a while before they told me I had drug resistant tuberculosis and I do not understand why it took so long. Only after three months they told me I had MDR. I was disappointed that they didn’t tell me to come to Bucharest and be enrolled in the MDR programme. I will never forgive them for that.”
Then she’s saddened that she saw many young people in the wards from the “Marius Nasta” Institute, and only patients with resistant tuberculosis come here. “It’s a shame that so many young people are ill. And I think we are most affected by how the others relate to us, the stigma. We are labelled as a TB person and never get rid of it. As if it’s our fault. Anyone can get TB, without doing anything. Here came a 14 years old child. He had been taking a handful of pills every day for a year.”
Closer to her family, further from some friends
She takes a handful of pills too. 15 pills and an injection every day, so much that the nurses do not know where to give them anymore. Puts her hand on her stomach and bends, as by a blow to the plexus: “When I hear the medication cart coming in the hallway, I feel a pain in my stomach, I know that the drugs will get here. And I have to be strong, to fight with my body, to control it. Many times, I feel like throwing up after taking the meds and I know I’m not supposed to, that’s not good, and I hold it, trying not to throw up.”
When she feels overwhelmed, Vali draws energy from thinking of her family. She loves them all, even more than before, because, from all this experience with tuberculosis, she won something. For instance, she learned to appreciate her family more, to respect and appreciate all they do. And the family fully supports her, they are all by her side. “Here in Bucharest, I have an uncle who comes to me weekly, brings me food, we chat. My mother, my sister, my brother-in-law, they all came to me, but the distance is long… The psyche is challenged hard.” Especially since Vali does not complaint to the family every time. She says there are days when, although she feels very sick, she does not tell her parents, “not to hurt them, as they suffer as well.”
While she’s closer to her family, the situation became complicated with her friends. She dreamed that she and her best friend would go to the same college, together forever, friends forever, a profound relationship, like in the books she reads. Now, the dream is just a dream. “I realized that there is no true friendship. When you’re in a bad situation, it’s just you alone and can only rely on yourself. This experience helped me see what friends I have around me. I learned to be more selfish and tougher with who deserves it. I changed my mind about friendship. ”
“My priorities have changed”
She doesn’t mention college anymore, it’s like it has become less important lately. Would she switch from veterinary medicine to human medicine? She smiles shyly and responds thinking elsewhere: “I might take human medicine, yes.” She cares about the people who have tuberculosis and, unlike her roommate, she would like to see cured even the one who started all this experience. “I do not know from whom I got the disease, but I would be happy to know that they are under treatment so that they don’t pass it to others. I hope they get treatment”, said Vali. “Or be dead already” sarcastically jokes, as if to herself, the roommate. Vali makes a gesture of defence – “No, alas!”
She does not hate that person. What for? She won’t get well like that, but only following the treatment to the end. Then maybe she will find the energy to make new plans. “My dream was to have a good prom, beautiful pictures, then pass the graduation exams and go to the faculty of veterinary medicine. I was thinking what dress I should get for the prom. But my priorities have changed. Now I want to stay three months in hospital, to manage to take the treatment and to get well. “