“You have MDR TB resistant to rifampicin. We are afraid that you will have to give up your scholarship and remain in isolation until your sputum test comes back negative!! We have to admit you to the hospital immediately,” your doctor says after seeing your report and walks away.
Leave scholarship? What are you waiting for???? What is MDR-TB? What is spit?? What does Rifampicin mean???
Your head starts spinning. The dream of studying abroad collapses before your eyes. You wonder if it's something serious but eventually you surrender yourself. You start a long regimen and instead of stepping into the 'Ivy' league… you end up in the 'IV' (intravenous) league!
This could be the story of almost every person whose dreams are dashed due to such 'slight changes in plans'!
In a country like India, where tuberculosis is one of the major public health challenges, we who have battled TB understand things from the other side of the table. We believe that 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 antibiotics, rather it should be about considering the 'whole' person – addressing their physical, mental and emotional needs – and this 'care' ideally should begin from the moment a person is diagnosed. , because that's a life-changing moment where everything – yes, everything – is on the verge of change.
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Antibiotics, antibiotics…but it's also about managing the brutal side effects like nausea, hair loss, boils/rashes on your skin, insomnia and many more. Sometimes the intensity of these side effects is so high that the person affected by TB feels tired and decides to give up. And this is where periodic medical interventions are needed to ensure adherence to treatment – a safe environment and patient ears that will reassure you of your doctors. Effective 'two-way' communication is minimal in skilled physical care. Is that too much to ask for? Let's sit on this for a while.
Easy. They are easy…they have questions, insecurities, fears and what not! This is where a consultant can step in. They can ease this transition a bit by holding the hands of the person and their caregivers and painting a realistic picture of their journey ahead. Having this kind of awareness will keep a family from becoming overwhelmed and will potentially prevent the person with TB from worrying about side effects that may occur soon.
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Additionally, once treatment begins, medications are known to affect a person's mental health. They can lead to new issues or aggravate pre-existing conditions like depression, anxiety, low self-esteem or even psychosis. In such cases, it is extremely important to have parallel mental support.
And finally, life happens when you live on your own terms. As mentioned earlier, long pauses due to the slightest change in plans can push a person to the brink of questioning their self-worth – you lose your job, you miss out on that career-damaging scholarship. Go – You are on a forced sabbatical, and sometimes even your loved ones leave you! Therefore, having access to therapy from time to time can help the person deal with the fear of losing 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 reviews the mental well-being of a person? This seems possible in the private sector, but what about the public sector? Does this seem like a far-reaching endeavor?
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And finally, while individuals affected by TB overcome minute-by-minute challenges, they also need emotional care. No…people affected by TB do not need sympathy. All they need is a sympathetic ear to overcome the illness. Constant physical comments like “Oh, what happened to the color of your skin?” Due to isolation, stigma and frustration. and “Oh my God, you look so dark” are likely to hinder successful completion of treatment.
Family, primary caregivers, and friends play an important role in confirming the disease and keeping loved ones feeling calm and centered. Can we as individuals and members of society make a healthy contribution to maintaining this much-needed balance? Can we adopt a more sensitive approach when dealing with people and families affected by TB? We can definitely try!
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In conclusion, holistic care in TB management means recognizing that treating the disease requires more than just 'pills'. By addressing not only the 'biological' aspects of TB but also mental, social and environmental factors, holistic care can create a more person-specific approach that can significantly reduce the burden of this ancient disease.
Health systems, policy makers and NGOs must work together to implement comprehensive strategies that place the person affected by TB at the center of care, acknowledging the complexities of living with and treating TB – because holistic care It's not just about killing bacteria – it's about effectively healing the 'whole' person.
This article was written by Akshata Acharya as part of a media fellowship supported by the Stop TB Partnership.
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