A back side story of TB patients will be never ended if we intend to explore. There are so many painful story that they have to face. The side effect of drugs and social economic repression on the other side are the problem that they have to carry on during their treatment.
Almost their stories have the same lines. They live in the poverty situation, unemployment status caused of the treatment, becoming unsocial in their community, stigma that they have to take from their surround neighbors, etc. It is really hard for them to face double or perhaps triple problems in their life.
Income is the main problem for almost of all the MDR TB patients because they have to resign from their jobs if they intent to follow their treatment. As consequences, they have to rely on their financial assistance to the family members or relatives or someone else who care about their condition.
These personal stories are not representative of all the patients’ stories. There are many other stories from patients that can be explored with the variety of interesting point of views. The names below are the examples of patient stories.
She is very shy person. In the first moment she tried to hide what she feels when we approach her to communicate. She comes from Kebumen, the small city in Central Java. She is 44 years age and widow with 2 children. She looks fresh and like healthy person as usual. Who knows, she is MDR TB patient in Persahabatan Hospital Jakarta.
In 2011, she coughed very often when she worked in garment industry in Cengkareng, West Jakarta. She worked in the room with minimum t ventilation and dusty condition. She though that her sick came from that situation. Then, she went to doctor in private hospital in Cengkareng. She looked after by two doctors and 1 pulmonologist for 3 months. 2 months in between, she has to be treated by injection. She told that doctors have a heart to inject her again because her body was too skinny. Siti Partiah still insisted the doctors to give her an appropriate treatment because she wanted recovery soon. She did not care with the pain she faced. Luckily, the expenses covered by his employer.
Based on her condition she resigned from her work because she felt no more energy. In July 2012 she referred to Persahabatan Hospital to get suitable treatment. Now, she is in 16th month of treatment and felt better gradually. Sometimes he felt so limp and dizzy, but her spirit to recover beat all the challenges.
On the other hand, income is the other problem for her. Every day, she has to spend as equal as IDR 30.000/days, meanwhile her daughter only able to give her IDR.100.000/week. Can you imagine how to adjust it? Moreover, her feeling is terrible because she feet that she become a burden for her daughter. She feels embarrassed, but she enforced herself to request her daughter or relatives to give her additional money. She must throw away her feelings in order to cure as soon as possible.
Now she lives with her relative nearby the hospital for a while. As a sensitive Javanese woman she feels uncomfortable with the information about her in her neighborhood. The peoples in her neighborhood have curiosity with her condition. She knows that her neighborhood smell her sick condition and it makes Siti afraid that she will be avoided by her neighborhood. As religious person, she does not intend to lie, but her condition made her to do so. It is dilemma for her until now. She wants to open about her condition, but she afraid with the consequences.
All of those problems made her impatient to recover soon. She eager to gather with her children immediately and she can work again to assist her family. Enclosed, she just said "I hope nobody will have this disease as I have because it is too hard.."