I was scared that if my husband or my mother-in-law would get to know that I have Tuberculosis they will break off the marriage. That’s why I hid the news from them.– Rani*
Rani is a 20-year-old and the mother of a nine-month-old baby. She was sitting out in the sun with her baby when I first met her. She was extremely talkative. Rani wanted to know more about me and was ready to share everything I prepared to ask her. It was difficult to imagine the difficulties that she had faced during this time. Rani has five brothers and sisters. Her mother is a homemaker. Her father retired from the army after he got a diagnoses for Diabetes. She stays with her husband and mother-in-law. Rani’s husband works in Kanpur in a powerhouse.
In early January 2022, she started suffering from a high fever and a cough. She came back to her mother and went to a rural medical practitioner (RMP) at home. He gave her injections, advised her to take vitamins to combat weakness, and charged them a hefty sum. Two days later Rani got a high fever again, with a cough that seemed to be getting worse along with a severe headache. Her mother did not have enough money at home so she took a loan from a money lender within the village and took Rani to a private physician within the district headquarters where they spent 3000 INR. The doctor there advised them to get a blood test and an x-ray.
By this time Rani and her mother were extremely worried. Through the help of the ASHA in their panchayat they got in touch with Guriya Kumari, field coordinator from Innovators In Health (IIH). Through Guriya’s consistent efforts, they took Rani to the District hospital to get an x-ray, blood test, and sputum test. Everything was free of cost within the government hospital, however, the travel up and down cost her 200 INR every single time. The first time when she gave her sputum sample, the test was negative, however on further advice of the doctor she provided her sample a second time and the result this time was positive.
The doctor started Rani on Drug Sensitive Tuberculosis (DSTB) medicines. Unfortunately, these medicines had extreme side effects on Rani’s health – excessive vomiting and constant ringing in the ears. IIH’s field team realized something else was happening here and decided to give her sputum sample for further investigation. Few more tests later, the doctor revealed that Rani was actually suffering from Drug Resistant Tuberculosis (DR-TB). The current medication that she was on will only aggravate her situation. Guriya further assisted Rani through the entire diagnosis process. Rani and her family were unsure about the new regimen of medicines since the earlier treatment didn’t go as planned.
Rightly enough, with the new medications came more nausea and shivering. To control this, the doctor started her on privately obtained medications which cost her 350 INR. Consuming her DR-TB medications along with these medicines on the side made it a lot easier for Rani thereafter. She admitted that the new treatment regimen helped her. However, she felt angry because the treatment meant she was unable to breast-feed her child.
To understand how Rani might have contracted DR-TB, we were informed that one of her far-off cousin brothers’, who was also her neighbour, had got TB and was getting his treatment done from a private doctor. However, he did not survive and this was a fear that was grappling Rani and her family.
Rani’s mother expressed her worry by saying, “It has been only two years since Rani’s marriage, I hope this will not affect that”. When Rani started her treatment she was staying with her mother. She did not tell her husband or her mother-in-law about the disease. “I was scared that if my husband or my mother-in-law would get to know that I have TB they will break off the marriage. That’s why I hid the news from them”. After she had been consuming the medicines for a while, when her husband got to know that she has TB he said, “You would have had this before marriage, but you deliberately kept this news hidden from us. Now, we cannot do anything, we are married, we will just have to manage”.
The DR TB treatment has benefitted Rani and her health has improved drastically. She did go back to her in-laws in the middle, however, everyone there would constantly tell her. Under this stress, Rani would often miss her medications and her health started deteriorating. Her husband was very concerned and, on his advice, she came back to her home, under her mother’s care. However, there is constant pressure for her to go back and therefore she has decided that after a while she will go back, but will take care to have her medicines on time and properly this time.
*Name changed to maintain confidentiality