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I Lost My Eyes To Survive TB: What India’s TB Patients Go Through

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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.

Representational image. Fighting TB is no less than a battle- one we fight alone- every day. 

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.

Representational image. Statistics tell you about the burden of TB in India – but nothing tells you about the burden that TB patients carry. 

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.

Featured image is for representational purposes only.
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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

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Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

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MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

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A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

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A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

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A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

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