“Is it just happening to me or is it experienced by everyone who once battled TB?”
“Am I being heard?”
“When will this end?”
“Will this ever end?”
“Why me?”
“What’s the point of going through so much pain?”
“Should I give up?
… and there are plenty of questions one faces while overcoming one of the deadliest diseases in the world. The treatment for tuberculosis is excruciatingly lengthy and is also physically and mentally taxing. Therefore, an underrated component of the ‘successful’ completion of the regimen is the role of peer support groups and their importance in effective TB management. These support groups act as common ground for individuals overcoming TB to share, connect and build a sense of camaraderie throughout the challenging phase.
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As someone who is recently diagnosed with TB, the person and their primary caregivers are bound to have questions. Having a dialogue with your peers can help in facilitating authentic information and refrain the individual affected with TB from constantly searching about the disease on the internet. Such interactions may allow them to take an active role in their treatment, ask the right questions when interacting with healthcare providers, and make informed decisions about their health.
When it comes to offering psychological support, peers also make a significant impact. The onset of treatment is likely to induce fear and a sense of isolation. People may also feel ashamed or embarrassed due to the existing taboos and stigma in society. Having a healthy peer support group enables the individuals affected with TB to express themselves without any fear of judgment. Knowing that the community members have been through similar experiences potentially creates a strong sense of support and helps people come out of their shells.
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Talking about the complex timeline of the treatment, many people are likely to feel exhausted and succumb to the brutal side effects. However, seeing the members of the group who once fought the disease successfully cross over to the other side may positively encourage the person affected with TB to not give up on their treatment. The members serve as role models, and their success stories help in cultivating motivation and optimism. Peers can also offer practical tips for managing side effects and coping with the daily challenges of the treatment process. The sense of accountability to the group can also reinforce the commitment to completing the treatment, reducing drop-out rates and contributing to overall TB control efforts.
And finally, after all the hurdles that throw you off the track, once you are finally TB-free, you don’t just leave it behind, you take it with you. Every cured individual goes on to inspire and motivate others to adhere to their treatment and successfully carry out the long yet worthwhile transition to the healthier side. The advocacy creates a cycle of empowerment, where former patients give back to the TB community by helping others navigate their journey. Creating such strong communities with powerful voices enables the system to hear the ‘human’ side of the disease. Policymakers can also get a real insight into the status quo through an authentic lens. Therefore, through strong peer support groups and advocacy, the healthcare system gets to hear real stories and authentic voices- which in turn could contribute towards effective TB management in the country.
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In conclusion, peer support groups play an indispensable role in the fight against TB. By offering psychological support, encouraging treatment adherence, sharing knowledge, and building communities, these groups help people affected with TB to overcome the significant emotional, social, and physical challenges they face. As public health systems continue to combat TB not just in India but also globally, peer support groups should be recognized and integrated as a critical component of effective TB care strategies, providing the ‘holistic support’ that is essential for long-term recovery and disease management.
(This article was written by Akshata Acharya as part of a media fellowship supported by Stop TB Partnership)
