For many years, even after being cured, Prabha did not share with others that she had suffered from TB. It was only about 12 years ago that she came out openly about her status. She credits this to a patient in a Mumbai slum whose remarks provoked her to share her story in an open forum. When she counselled Ramabai, who was interrupting her TB treatment all the time, on treatment adherence, she retorted: 'It is so easy for you to counsel me. If only you had gone through all this yourself and had had a taste of the medicines I have to eat everyday, you would never give me all this advice'. Ramabai's remarks really woke Prabha up. On an impulse she told Ramabai: "What if I told you that I too have suffered what you are suffering today?" She then promptly called a patients' meeting where she openly declared her status of being a TB survivor. Now they identified her as one of them and she found herself in a better position to be able to mobilize groups of TB patients to do peer counselling. That was Prabha's first baby step to overcome her own self stigma and there has been no looking back for her since then.
Counselling and treatment literacy
TB has taught Prabha many things. For her, it is just not about having the disease or about taking medicines. It is also about treatment literacy and about dealing with the psycho-social issues that come with TB, especially in the case of women. "Men can get some kind of peer support at home, at their workplace, or in their social circle. But it is a different ballgame for women. Traditionally no one cares about what she eats (or not eat) at home. Nobody cares how important nutrition is for her, how important her mental well-being is to fight the disease and complete treatment. I have come across many women TB patients who have alcoholic husbands and insensitive family members who act as stumbling blocks in their treatment path."
Along with stigma and discrimination, treatment noncompliance remains a huge problem till today, and according to Prabha no amount of technology (sending them voice mails, messages, etc) can substitute the human element - a person actually sitting down with the patient and offering psychological support. "If I could interrupt treatment for a couple of days, despite all the family support and education I had, what to talk of others. As a TB advocate, I try to provide emotional strength to the patients and their families. The role of counsellors should not be undermined in our programmes, even as we give more importance to data, research, and documentation. We also need more TB support groups comprising cured TB patients. There must be strong incentives for them to act as peer support to others."
"Today I am shocked that instead of giving me the confidence of dealing with my disease, my doctor kept on brainstorming me that I should keep my disease as private as possible. Also, despite having ETB, which is not infectious, he asked me to keep away from my daughter. She stayed with my parents for one long year . I suffered all this injustice because I did not have any proper knowledge about TB. Only if my doctor had counselled me properly, I would not have faced this mental trauma."
But Prabha has come a long way. Her daughter who is now 18 years of age, actually encouraged her to become a TB ambassador with the International Union Against Tuberculosis and Lung Disease (The Union). "Now I talk openly about my past disease in open forums as a TB advocate. I am a master trainer for TB advocates. I do not have to rehearse or prepare a presentation as I speak from personal experience. I encourage cured TB patients to come to the forefront and get involved with the programmes meant for them. Who can better talk about their challenges than they themselves? We need to bring in more TB survivors as advocates."
Shobha Shukla, CNS (Citizen News Service)
(Shobha Shukla is CNS Managing Editor and thematic lead on gender and health justice. She has taught physics at India's prestigious Loreto Convent for over three decades. Follow her on Twitter @Shobha1Shukla or visit: www.citizen-news.org)
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