I thought it was just an eye infection

From Surviving TB of the eye to Becoming a TB Champion

In 2019, my life took an unexpected turn when I developed excruciating pain and blurred vision in my eye. I thought it was just an eye infection. But the condition persisted despite visiting several doctors. The situation worsened especially during the lockdowns when medical consultations were not easy to book. After a long and harrowing process, I was finally diagnosed with tuberculosis (TB) of the eye at AIIMS, Delhi. The diagnosis came as a shock. Like many, I associated TB with symptoms like coughing and fever, none of which I had. The treatment journey was daunting, an arduous year-long course that tested my resolve. But it was the lack of awareness and support that hit hardest. The stigma surrounding TB was overwhelming. I was treated with suspicion and misinformation by other patients and paramedical staff at the clinic – asked to not sit on the benches in the waiting area; told that all TB is contagious and incurable. I was scared and depressed and desperately needed guidance and reassurance that TB was not a death sentence. But there was no one to answer my questions or allay my fears: with long queues the doctors simply don’t have the time to counsel each patient individually. All I could do was look up information on the internet which was conflicting and difficult to understand.

The whole experience transformed me. Determined to get better, I completed my treatment and emerged a survivor. When I was contacted about the Unite to ACT (UTA) project, I saw an opportunity to turn my pain into purpose. It became a turning point in my life. I received training and attended workshops that not only deepened my understanding of TB but also improved my communication skills. This knowledge has equipped me to effectively raise awareness, lead campaigns, and provide counselling. In my role as a TB Champion, I’ve dedicated myself to breaking down TB-related myths, raising awareness, and offering the kind of support I once needed.

At the Shahdara Clinic in Delhi, I counsel patients, reassuring them that TB is curable and they’re not alone. I also educate people about the lesser-known forms of TB, like the one I had. Through community awareness campaigns, I help people understand the importance of early diagnosis, treatment adherence, and provide information about referral to healthcare institutions for the management of adverse events and co-morbidities during TB treatment. Many people I’ve counselled didn’t even know that getting tested wouldn’t cost them anything. We also spread the word about the Government’s Nikshay Poshan Yojana, which provides monetary support to help persons with TB meet their nutritional needs while on treatment. Then there’s the work we do to fight the stigma and shame around TB. In some schools, for example, students with TB were not allowed to sit in class and often ended up missing school. I counselled teachers who weren’t aware that not all TB is contagious and that with regular treatment even infective forms of TB become non-contagious in a few weeks.

Being part of the UTA project has taught me the importance of personalized, individualized counselling. Gender also plays a significant role in how we approach counselling. Women sometimes struggle to find time for testing, which is usually scheduled in the morning. During one field visit, I spent hours convincing an elderly lady with symptoms to come to the test centre for diagnosis. Another time, there was a woman with TB who came to me almost in tears because her husband didn’t care about her nutritional needs. I had to step in and counsel them about how crucial it is for her to have timely, proper food to recover quickly. Some people also fear job loss and struggle to adhere to treatment, while others live far from testing and treatment centres. Counselling plays a vital role in ensuring adherence, creating hope, and supporting mental well-being.

Before joining UTA, I was already a survivor; but now, I am a TB Champion with a clear identity and purpose in life. I serve as a critical link between the voices on the ground and the doctors. I ensure that the solutions we implement are responsive to the actual needs of those affected by involving the community in discussions and incorporating their insights into our strategies. Through the Survivor-Led Networks under the project, we engage with TB survivors and invite them to join this supportive community where they can exchange experiences and offer their perspectives. This initiative has inspired other survivors to become TB Champions themselves.

I survived TB on my own, but others don’t have to. Becoming a TB Champion has made me understand something crucial: it’s not just about surviving TB; it’s about thriving beyond it.

Based on a telephonic interview with TB Champion Aashiya Khan.

ABOUT UTA
The Unite to ACT (Amplifying Community Action for TB Elimination) project implemented by REACH in collaboration with FIND aimed to enhance community engagement in tuberculosis (TB) care delivery. It built the capacity of TB-affected communities, promoting rights-based, gender-responsive and equitable services for all and accelerating the uptake of community-led activities in 10 states. In 15 additional states, the project helped mainstream community engagement into NTEP policies, strategies, training and service delivery; strengthen the functioning of national, state and district TB Forums; and effectively engage communities. The project trained over 1,900 TB survivors to become TB Champions, who delivered person-centric TB services to over 2,13,500 persons with TB. Through its activities, UTA helped translate into action the National TB Elimination Programme’s (NTEP) vision of enabling the active participation of communities and going beyond their role as ‘passive recipients of care’.