“You have MDR TB with resistance to rifampicin. We are afraid you will have to give up your scholarship and stay in isolation till your sputum tests are negative!! We will have to hospitalise you right away,” says your doctor after seeing your reports and walks away.
Give up scholarship? Wait, What???? What is MDR-TB? What is sputum?? What does rifampicin mean???
Your head starts spinning. Your dream of studying abroad shatters in front of your eyes. You wonder if it’s anything serious but you eventually surrender yourself. YOU START THE LONGER REGIMEN and instead of stepping into the ‘Ivy’ League… you get into the ‘IV’ (Intravenous) League!
This could be the story of almost every individual whose dreams are tossed because of such a ‘slight change of plans’!
In a country like India, where tuberculosis is one of the major public health challenges, we as individuals who battled TB understand things from the other side of the table. We recognise how a more comprehensive approach—holistic care—is essential for effective treatment and long-term recovery. Holistic care for TB should not just be about prescribing the antibiotics, but it should be about considering the ‘entire’ person—addressing their physical, mental and emotional needs—and this ‘care’ should ideally begin right from the moment an individual is diagnosed, because that is a life-altering moment where everything—yes, EVERYTHING is on the precipice of change.
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antibiotics, antibiotics…but it is also about managing the brutal side effects such as nausea, loss of hair, boils/rashes all over your skin, insomnia and many more. Sometimes the intensity of these side effects is so great that an individual affected with TB feels tired and decides to give up. And this is where periodic medical intervention is needed to ensure treatment adherence—a safe environment and patient ears that will make you conde in your doctors. Effective ‘two-way’ communication is the bare minimum in efficient physical care. Is that too much to ask for? Let’s sit on it for a while.
easy. They easy…they have questions, insecurities, fears and whatnot! This is where a counsellor could step in. They could make this transition a little less overwhelming by hand holding the individual and the carers by painting a realistic picture of their journey forward. Having that kind of awareness wouldn’t make a family paranoid and it would potentially refrain the person affected with TB from getting anxious about soon-to-be kicking the side effects.
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Also, once into the treatment, the medications are known to affect the mental health of an individual. They might trigger new issues or escalate the already existing conditions like depression, anxiety, low self-esteem or even psychosis. In such cases, having a parallel mental help is of paramount importance.
And lastly, life happens while you are on your regimens. As mentioned earlier, the long pause due to a slight change of plans could push the person on the edge of questioning their self-worth—you lose your job, you miss out on that career-dening scholarship—you are on a forced sabbatical, and sometimes even your loved ones abandon you! Therefore, having access to periodic therapy could help the person cope with the fear of missing out and prevent them from taking any extreme steps.
Can we achieve a model where monthly follow up is not just about checking physical health parameters..but also reviewing the mental well being of a person? This seems achievable in the private sector, but what about the public sector? Does it seem like a long shot?
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And lastly, while the individuals affected with TB overcome the minute-to-minute challenges, they also need grounding emotional care. No.. people affected with TB don’t need sympathy. All they need while overcoming the disease is an empathetic ear. Isolation, stigma and frustration due to constant physical remarks such as “Oh what happened to your skin colour?” and “My God you look so dark” are likely to create a hindrance in the successful completion of the treatment.
Family, primary care givers and friends play a crucial role in validating the disease and making their loved ones feel calm and centered. Can we as individuals and society members healthily contribute towards maintaining this much-needed equilibrium? Can we adopt a more sensitive approach while dealing with people and families affected by TB?? We can definitely try!
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In conclusion, holistic care in TB management is all about recognising that treating the disease requires more than just ‘tablets’. By addressing not only the ‘biological’ aspects of TB but also the mental, social, and environmental factors, holistic care could create a more person-specic approach that can signicantly reduce the burden of this ancient disease.
Health systems, policymakers, and NGOs must work together to implement comprehensive strategies that put an individual affected by TB at the center of care, acknowledging the complexities of living with and treating TB—because holistic care isn’t just about killing the bacteria—it’s about effectively healing the ‘whole’ person.
This article was written by Akshata Acharya as part of a media fellowship supported by Stop TB Partnership.
