Statistics tell you about the burden of TB in India – but nothing tells you about the burden that TB patients carry. TB is curable, even preventable, and yet, so many people die from it every single day in our country. But, we never ask why.
For me, it all started in October 2017, when I noticed 3-4 swollen areas in my throat, and started getting fever and a persistent cough. I went to a Government hospital where I was prescribed medicine and was told it’ll help subside the swelling in my throat. I started feeling better after taking the medication for a month and then discontinued its use. However, in February 2018, my health worsened. The swelling in my throat grew bigger, I started running a temperature again, and became very weak.
This time, I went to another government hospital, where an ultrasound and a biopsy were carried out on me. The biopsy was very painful. The junior staff at the hospital had performed the biopsy without numbing my throat. They couldn’t make the correct incision at the first go and poked me till I couldn’t bear the pain anymore and a senior doctor was called to perform the procedure correctly.
The biopsy results said I had extra-pulmonary TB. The doctor at this hospital was surprised that I wasn’t told I had TB at the previous hospital I had taken treatment from, back in October ‘17. The doctor then started me on TB medication and explained to me that I’d have to take the medicines regularly for 6 months.
The fight with TB became an everyday battle. For 5 months, I dealt with various side effects such as vomiting, constant nausea, and even neuropathy. A little later though, suddenly, I lost eyesight from both my eyes. When I went to an ophthalmologist, I was told this was a side effect from one of the medicines I was taking to treat TB. The doctor who was treating me for TB never mentioned the possibility of such side effects.
All I could think of, was why was I given such a toxic drug with such adverse side effects? Could I not have been given better medication? After I lost my eyesight, my doctor changed my regimen and told me I needed to take these medicines for another 6 months. However, these new medicines weren’t available in the government dispensary so I had to purchase them for INR 1000 every month, along with the expenses of my eye treatment.
I would only earn some INR 3000 as rental income from the rooms in my home that I had rented out. My husband died in 2013, and ever since then, there was no breadwinner in the family either. I had to look after not just myself, but also my 3 children- and I had to ensure that they were well fed.
The kind of protein-rich diet that a TB patient should ideally consume, I could not afford. My doctor didn’t inform me about the government’s Nikshay Poshan Yojana, through which I could have received monetary support for my nutrition. My ophthalmologist told me that had I been on a protein-rich diet, my eyes wouldn’t have gotten as badly affected due to the side effects. It was hard to manage two square meals a day for my family, along with the treatment-related expenses, so I had to take loans from people. My treatment took a huge toll on my mental health, and sometimes, I didn’t even feel like getting out of bed. Yet my kids kept me going.
For my children, I managed to gather the courage to fight TB. With time, I started getting back some of my vision and heaved a sigh of relief. I was particular about taking my medicine on time and kept myself occupied in household chores. Whenever I used to feel upset or disheartened, I would speak to my children, or watch some movies. Gradually those 11 months passed us by, and I completed my treatment. I can’t see from one eye – but I still managed to defeat TB.
I know a lot of people lose this battle. TB is curable, yet, it remains India’s severest health crisis- why? Because patients are looked at as cases, rather than actual living, breathing people.
Lessons From My Story? Many.
Doctors often don’t inform patients about their regimen, don’t counsel them about their side effects, or how to manage these when they eventually happen. Patients should be given accurate information about their disease so that they can make informed choices about their treatment and also complete their treatment with ease.
What do patients need? Better medicines, with fewer side effects. Better support schemes and mechanisms to help patients complete their treatment. A compassionate health system, including doctors, hospital staff and other providers that should ensure the patients are treated in a stigma-free environment, and with empathy.
Would the country ever have an army go to war without weapons? Then why are patients expected to battle TB without any proper support? Fighting TB is no less than a battle- one we fight alone- every day.
Note: Reena Devi is a TB survivor who experienced severe side effects while on treatment.