My fight with tuberculosis

The treatment was long and painful, but I came out cured, but not everyone is as lucky. TB patients need a lot more support and compassion from society.

A volunteer signs a signature campaign poster for a tuberculosis awareness programme in Secunderabad, Telangana, in 2012. | Photo Credit: Getty Images/ iStock

August 2021. I was impatiently awaiting my turn with the doctor at a Delhi hospital. As the time of the decisive appointment drew closer, a mixture of anticipation and anxiety gripped me. My life was about to take a dramatic turn—the doctor was to pronounce judgment on what had been ailing me for months and chalk out the future course of action.

Although his chamber was brightly lit, I saw darkness all around as I entered the cabin. The doctor said grimly, “You have lymph node tuberculosis and we will have to start treatment immediately.” And with that, the weight of the diagnosis hit me with full force. Strangely, I also felt a sense of relief as I got to know at last what had sickened me for months. And there was also solace in knowing it was not cancer.

It had all begun with a neck pain that wouldn’t ease, accompanied by persistent fever. This was followed by the gradual emergence of an unsettling lump on my neck. I did not know what was happening to me. The doctor recommended a series of excruciating fine needle tests to pinpoint the disease. After days spent in physical and mental agony, I got to know the diagnosis at last. When why or how did I get it, I wondered. But I was also determined to fight it. The prescribed medication was harsh, and the side effects were debilitating. I lost weight and hair and was constantly tired. More than that, I was worried about how the diagnosis would affect my career and personal life.

Myths about tuberculosis

In India, tuberculosis is stigmatised even now due to a lack of awareness about the disease. Affected people are shunned by their families and communities. Organisations routinely fire employees diagnosed with tuberculosis, and women in rural India suffering from the illness often die single. This is due to the fear that tuberculosis is contagious: not all forms are and, in any case, one has to be exposed to the tuberculosis bacteria for a prolonged period to catch it. Most importantly, it is curable with the right treatment. I know this because I survived it. I am sharing my story here so that everybody gets to know.

A doctor examines a tuberculosis patient on World Tuberculosis Day in Guwahati, on March 24, 2018. | Photo Credit: AP/ Anupam Nath

However, back in 2021, when I was just 23, I did not feel so brave as the diagnosis came. I was working as a reporter with a digital website, fearlessly chasing stories in the bustling streets of North India. But with the diagnosis, fear acquired a new face. Would I lose my friends? Will my career be affected? As the world turned at a frantic pace, I was forced to pause, and reflect on my health.

Silent battle

I went through an intense year of treatment, during which my mood plummeted. Tuberculosis kills you from the inside. It sucked the life out of me. I had to take a plethora of medicines, including steroids, which affected my digestive system. I was put on a high-protein diet. But I had no appetite and threw up each time I swallowed a pill. In a society that idolises resilience, I fought a silent battle that tested my courage a few times daily. I would often break down in the bathroom. The treatment was the most excruciating experience I had ever undergone. I hope that someday we will reach a place where the treatment for lymph node tuberculosis is less painful.

Experts in the field emphasise that mental health conditions, including anxiety, depression, sleep disturbances and post-traumatic stress disorder, are common side effects of tuberculosis medication. Dr Satish Ramaiah, director of Maarga Hospital, a super-speciality psychiatric institution in Bengaluru, said, “With India’s primary focus still being on the medication for the disease itself, the profound mental health challenges of the treatment on patients are neglected.” He underscored a range of factors, including societal stigma, tangible physiological changes brought about by medication, and compromised immune function, that can significantly impact the mental well-being of patients. “In India,” said Dr Ramaiah, “Negative thoughts in the patient might slow down treatment. A mental health professional should be involved from the very start.”

What kept me going during the months of treatment were friends and family. While I did lose some friends, I forged new bonds too. And my family stood by me all the time. Their support pulled me through.

Start talking

I also looked for forums where people talked about dealing with tuberculosis. I found very few, but the handful I found gave me courage. I feel there is an urgent need to start the conversation. If someone you know is dealing with tuberculosis, educate yourself on the condition. Don’t isolate them. Ignorance breeds fear and hatred. Being isolated or unloved during the treatment is one of the main reasons that people give up on tuberculosis medication.

Although tuberculosis is treatable, steps to tackle the disease fall short of expectations globally. India is the tuberculosis capital with more than 2 lakh deaths every year. India accounted for the highest number of tuberculosis cases in the world in 2022, as per data revealed by the World Health Organization’s new Global TB report, 2023.

I took my last batch of tuberculosis medicines on April 18, 2022, and was declared cured a few weeks later. On that day—a personal landmark—I ordered a cake for myself. It had been a long and difficult journey, but I had come out stronger. I am now back to my old self, chasing stories and investigating them with the same passion and determination that I had before. But I am also a different person. I am more grateful for my health and more aware of the importance of taking care of myself.