Akshata Acharya

Ever since I was a kid, I dreamt of being an actor. I loved the stage, the spotlight, the stories, the possibility of becoming someone else for a few hours. Whether I was rehearsing my lines alone on an empty stage, dancing in my room, or pretending a bottle was a microphone while dressing up, I lived and breathed performance. Creative expression was my world, and I was certain nothing could ever pull me away from it.

​

But then something happened that I could have never imagined. It wasn’t in any of my plans.

I noticed a small swelling near my right ear. My mother and I thought it was probably nothing, but we went to the doctor anyway. A check-up turned into tests. And tests turned into a diagnosis. TB. Just like that, my whole world turned upside down.

​

At first, I was still clinging to a version of hope that this would be a short phase, a set of medications and I’d be cured. But nothing about what followed was simple. Even figuring out where to get medicines or which queue to stand in for tests was a nightmare. The hospital felt like a maze, and I felt completely lost inside it.

​

The treatment itself was brutal. I had to take over 19 medicines a day, every single day. The side effects were debilitating. I lost my sense of taste and smell. My skin tone darkened. I felt like I was slowly losing my sense of self.

​

What got me through was my family. My sister, in particular, became my anchor, she made detailed charts to help me keep track of my pills and appointments. She was relentless. Their support reminded me that I wasn’t alone, even in the worst moments.

​

But every hospital visit exposed me to more stories like mine. People just beginning their TB journeys, confused, scared, overwhelmed. I saw the same look in their eyes that I had once seen in mine. It broke something in me.

​

I remember vividly one day, a young woman around my age was told, bluntly and without pause, that she had MDR TB. She’d have to quit her job and get hospitalised. No time to process, no room for questions. When she tried to ask something, she was shut down. I could see her world crumbling.

That moment enraged me. It reminded me of my own early days in the hospital, how helpless I had felt. And I kept thinking: is this what care looks like? Shouldn't it also include compassion for the mental and emotional toll this disease takes?

​

That’s when I knew I had to do something. TB isn’t just a physical disease. It shatters you emotionally and socially too. I didn’t want to just “go through it” and move on. I wanted to do something. I needed to connect with others who understood.

​

That’s how I found Survivors Against TB, a community of people who had been through this battle and came out stronger. Through them, I began a different journey. One beyond TB.

​

Together, we are fighting for what truly matters: empathetic, person-centered care. No one should have to run from pillar to post just to get a diagnosis or access medicines. Everyone deserves to be treated with dignity, respect, and understanding, at every step.

​

My TB journey was tough. But I know for many others, it’s even tougher.

And that’s why I speak out.

​

Because when we fight with empathy and solidarity, we don’t just survive, we change the system. We change the story.

​

We all deserve dignified, humane, and compassionate care. Nothing less.