In times of COVID and related distress, here’s Vijeta Rana‘s story for some inspiration!
It was in November 2013 that the alarm bells had started ringing. My chronic cough would not go away. Initially, I had assumed that my cough, night sweats, chest pain and weight loss were all symptoms of a normal viral—but the day I found blood in my sink, I realised it was something serious, and I finally decided to see a doctor.
At first, my TB test came negative as I was only tested for normal TB. Yet the doctor continued TB medication for six months because my symptoms were exactly the same as those of TB. This incorrect diagnosis and medication made my bacteria drug-resistant, or maybe, it was drug-resistant from the starting.
Numerous permutations and combinations followed. Life changed completely. Doctors waiting rooms began to feel like second homes. Tests, medications, more tests: TB changed my life. It took the doctors almost two years to realise that I had Multi-Drug-Resistant tuberculosis or MDR TB. I had no clue what this meant, and neither did my family.
My entire family broke down.
I continued the medication for over two years. I was started on a six-month course, then an eight-month-long one, and finally, a 24-month long course. In between all this, I had to drop my Masters twice. I had been continuously vomiting for the first six months. My menstruation cycle got disturbed, hair fall started, skin colour got black, and many more things happened. The side effects started taking a toll on my mental health. The biggest reason for this was the depression caused by social stigma and change in my appearance. I also lost a lot of weight rapidly, which added to my nausea, constant fatigue, and low immunity.
My family was very supportive; they were my primary caregivers. But people from my community started distancing themselves from me when they found out that I had TB. Plus there is always an added stigma for women surrounding issues like marriage.
It was due to this stigma that I avoided telling anybody about my disease. Since nobody knew that I was suffering from TB, and I could not share my feelings with many people. I started feeling low all the time. I was feeling like a burden on my family because I was doing nothing. I started writing daily. Apart from my family’s unconditional support, it was maintaining a daily diary that helped me cope with my depression. I also rejoined my Masters, and that helped immensely as well.
The road to recovery is slow, but one has to persist. I also slowly started doing small everyday tasks on my own, which truly felt like an achievement, and made me feel happy.
In the last five years, the TB landscape in India has shown improvements. Now there is better awareness amongst the public, and even the doctors have started making better diagnoses. Even the government hospital facilities have gradually been advancing, but there are still some problems that persist. These include lack of medicines—we often hear of stock-outs and insufficient nutrition for those affected, besides the inadequate counselling given to patients and their families.
What can we do?
Everyone needs to start talking about TB openly for the survivors and patients to share their stories fearlessly.
Apart from the unconditional support of family and daily writing, what got me through this phase was the support system of my friend and other TB survivors. I had created a support group on WhatsApp with the name Warrior along with two other TB warriors to make sure that we are doing the best we could do for their physical as well as mental health. The group has given a safe space to survivors and patients to share their stories and give advice to others. We also share other content like songs and poetry to cheer ourselves up.
We slowly started expanding this survivor and patient support group, which today has 50 members, including one each from Africa and Pakistan.
This family of survivors and TB warriors can counsel the families on what TB actually is, and the precautions to be taken when a family member is undertaking treatment. They can easily fill in the information gaps created due to lack of awareness and counselling provided by the government and even private healthcare facilities.
My treatment for MDR TB got over in 2017, and since then, I have been okay. I had to drop my Masters twice, but I completed my studies along with my treatment.
I am now working as an HR manager in an IT company in Haryana. Life after TB is different. I have started seeing things from a different perspective—I have much more respect towards the people who stood by me during that phase.
This was transformational for me. From a TB patient, I turned into a TB survivor—a fight I intend to continue for as long as I can.