Project financed by the Norwegian Grants 2009 - 2014, within the RO 19 - Public Health Initiative.
I wouldn’t dare interrupt the treatment for anything in the world.
At 31 years of age, Sara, a woman from a mountain village, learned the lesson of being optimistic. She says she “gladly” takes the eight medicines a day and she wants, at any cost, to “stop” the disease. She cannot afford to abandon the fight, her children come first. Moreover, she is convinced that she will get well because, as we know, treatments now aren’t those of 20 years ago.
She thought she had anaemia
It was a day at the beginning of summer, and Sara was doing her household work, as she always did after her husband left for work down to the village. That day she felt a little weak and some sort of undefined dizziness was not letting her be her usual self. She thought she was anaemic and she decided to do a set of tests at the county hospital. And, since she was going to the city anyway, she would do a check-up on her lungs as well. Fatigue and dizziness could also have come from the beginning of a cold. “I did the blood tests, they came out well, no unusual problems. Only that the lung film confirmed I had a stronger cold. They said I was suspected of TB and they decided to send me to the Leordeni Hospital.”
Sara knew nothing about tuberculosis. Absolutely nothing. She didn’t know anybody who could have had this disease and when the doctor told her you pick it up from the air and told her a little more about TB, she was surprised. “I was shocked by what I was told, because I hadn’t expected it. I hadn’t led a careless life.”
She armed herself with patience
As she herself says, she tried not to panic and, being “aware of the disease that was to take hold” of her, she complied with the doctors’ recommendations and she went herself to the hospital, in order to be admitted. She is a delicate person, with dark and sad eyes, who often repeats that she has to go on, and she has arguments. “I try not to panic, if we think that, anyway, this is a disease that is treatable, only that it needs more hospitalisation time and we must have patience. A lot of patience,” as Sara learned in the seven weeks that she has spent in hospital so far. She is calm, perhaps also because her body accepts the medicines well, she doesn’t feel sick. She takes eight medicines each day and she says that she takes the treatment “gladly”, that she doesn’t have any problem with it. She hopes to spend only two months in hospital and then only follow outpatient treatment, probably for another six months, from what the doctor told her.
Now, Sara knows what tuberculosis is. Not only from what the doctor who treats her now has told her. She researched on her own to find out more, because “there are also all these internet sites you can access. But, well, we don’t rely on them 100%.” Now she realises that TB is a quite serious, but curable disease. “What can I say? I’ve gotten used to the thought and I came here to get well and go on with my life. Because I believe I will be cured,” Sara says. Sara wears a surgical mask as we talk – she has not become negative yet and she is contagious. She still undergoes investigations, until exactly those medicines that are the most efficient in her case will be determined. No matter what, she is decided to go through with the treatment. From what she has read, from her talks with the doctor and from what she has seen in the hospital, she knows very well that she must cling to the treatment, otherwise the disease will relapse and will be harder to treat. “Perhaps it won’t be like this. You know, it also depends on us,” she understood. “I wouldn’t dare interrupt the treatment for anything in the world, no matter how hard it might get. I go through with it to the end.”
This disease “just hits you like that… it takes you by surprise”
Does she has a family? “Of course. I have a family, I have a husband, I have kids.” Two little girls who live with her and a boy of 14 who lives with her ex-husband. Faith and the thought of her children and her husband give her strength. Then there is her mother, her brothers-in law, everybody tells her she will be fine, all are there for her and Sara feels lucky because, she says, “the mental part is very important. There are moments when we are down, we cry, but that’s how it is. We pick ourselves up and we go on.” She always talks in the plural, about “we, the patients,” “we have a diagnostic,” “we should go on.” She doesn’t want to think of herself alone in front of this challenge, and she is not alone. So far, she has not talked to a psychologist and she hopes she won’t get to the point when she will need to. She constantly talks with her husband, they support each other and she is very happy that everybody in the family had good test results, nobody else has TB.
She doesn’t even know how she came to get this tuberculosis, who she got it from. “You see how this disease is, it just hits you like that… it takes you by surprise.” And so her life will change. Sara understands this very well and she also knows that she has to comply with certain conditions in order to maintain her health. “I am aware that my life will change. We go on with our lives, with whatever God gives us, there is nothing we can do.”
She knows she will be cured because medicine “is no longer what it was 20 years ago”
She dreams of the day she will return to her normal life, when she will again work around the house, stumbling on her little girl of one year and a half who has learned to walk and will constantly move around her feet. She sees herself cooking meals for her husband when he comes home from work. No, she would prefer not to have a job again. She is rather tempted to stay home, raise her little girls and see about the house. “Now I am a housewife, but I did once worked in a pastry shop. If I did work again, I would choose this field again. I presume that some job can be found out there for us too, the people with certain problems, even if we are sick …”
Still, she doesn’t believe she could get back to this occupation, due to the flour powder and the steam which, she thinks, would damage the lungs. “To be sincere, I’d rather stay home, if I couldn’t work in a pastry shop. You know, I would somehow want to think of my life as well, not to get to a point where I could do even more harm to myself.” There is no question about other plans because “first of all we must be able to raise our children” and then, there is plenty to do at home too.
She is calm because she understands that medicine has evolved and the treatment is much more efficient now than it used to be. “It’s not like 20 years ago or… I don’t know how many years ago since this disease exists.” And she also understood something else: “It also depends on the person. If we are a little more optimistic, the treatment too, I suppose, works a little better. I try to think that at home there are two girls who wait for me and I will fight for them. When she is sad and she feels overwhelmed, she picks up the phone and calls her mother or calls home. “Don’t worry, mom, you’ll get better and you’ll come home,” this is what her girls tell her when they talk on the phone to Sara. They can’t visit her. Sara is afraid that her little ones might get sick. Only her husband comes, when he has time. They don’t have a stable income. Her husband does daily labour, “wherever he can find something,” but they are not afraid of the future. With God’s help, Sara says, they will manage.
“I don’t want this disease to stand in my way”
She keeps strong, she always encourages herself, she tells herself “we must be optimistic,” but she admits that sometimes she cries, sometimes she has negative thoughts. “You think what a pity it is that at this age this somehow cruel disease comes up. But, in the end, everything is written by God and, if this is how it was meant to be, it’s nobody’s fault that I or someone else got sick.”
In the beginning, until she found out “what everything is all about with this disease and until I knew what stage I was in, how it gets into your body and what it can do to you if you let go of yourself, I can say that every day I was feeling like…” Then, when she found what the disease was in fact and that it could be treated, she calmed down and she told herself that, as long as she followed the treatment, ate well and rested as much her body needed, there was no reason why she wouldn’t be cured. “I don’t want this disease to stand in my way, I want to stop it and I want it to end here. Even if this doesn’t happen right now, but in a week, a month, it must stop growing. I believe that life goes on.”