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The ‘ordinary’ faces of the disease

Every year on World TB Day, numerous articles will be published about tuberculosis. This is one day of the year when we wake up to the fact that we are battling a treatable and curable disease yet one that kills about 1,000 people a day in India. As someone who has worked on TB for over 15 years now, I would like to focus not on the global struggle or India’s challenges but on the ordinary TB patient who remains invisible in the ongoing discourse on TB control.

Gomathi had been coughing for a long time. As a domestic worker, she had little time to think about herself. She noticed her cough only when it started to interfere in her ability to work. A visit to the nearest doctor resulted in a diagnosis of TB. She was shocked. Fear zipped through her mind. How could she support her family? Would her employers allow her to work if they found out that she had TB?

Kannan called our TB helpline in great anxiety. His daughter was diagnosed with brain TB and put on treatment but her condition was rapidly worsening. On review we found that she had been given prescriptions for anti-convulsants, which he was giving her, and a referral form sending him to the TB clinic for anti-TB drugs, which he could not read. No one had explained to him what the referral form was for, and the treatment delay had a disastrous effect on his daughter’s recovery.

Gomathi and Kannan are not characters that I invented. They are real people — they could be anyone that we know. These are real-life scenarios that can hamper a patient’s progress and prevent them from completing treatment. The journey of a patient from the onset of illness to cure is full of obstacles that can derail his treatment and thereby the outcome. Yet we tend to blame the patient and not the system for failure to complete treatment.

Anybody with TB needs to take regular and continuous treatment for six to eight months to get cured. The patient’s responsibility is a very difficult one — having to swallow many pills every day, while balancing their work-life routines and dealing with the disease.

A diagnosis of TB often leads to a high degree of fear and even misconceptions. Tuberculosis has been associated with stigma so powerful that it can affect not just the patient but also the entire family. The stigma results in not being able to find someone to marry you, being asked to vacate your home, losing your job. Women are sent back to their parents’ home, the elderly shunned within a family ... today, in the 21st century, is this allowable? Can we look critically at ourselves and at the way we behave with people who have infectious diseases such as TB? Can we resolve to be more human, empathetic and understanding of their difficulties? This World TB Day, let us change ourselves, our attitudes, and our behaviour.

(The author is Programme Manager, REACH, a Chennai-based NGO)

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Printable version | Jul 13, 2020 2:36:02 PM | https://www.thehindu.com/opinion/open-page/the-ordinary-faces-of-the-disease/article7025348.ece

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