I am Chinmay Modi 28 years old born and living with HIV. I got to learn about my HIV status
at the age of 9. Growing up and living with HIV is definitely not easy as I had to adapt my
life-style like having to take medicines daily. I still had difficulties taking my ARVs and
acquiring TB made the situation worse. At first, the doctors were not able to diagnosis my
TB, I kept losing a lot of weight which impacted on my self-esteem. I was not able to look
into a mirror and as an adolescent, which was traumatising.
After 17 months of long struggle, and multiple tests, it was detected that I had extra
pulmonary TB at 14years. I had then missed my school and even playing with my friends. At
school, I was burdened with a double stigma of HIV and TB. As if the stigma was not enough,
I had a double burden of medicines with almost 16 tablets which ashamed me every day. It
was difficult for me to manage my treatment timings as I could not take it infront of my
teachers, friends. I used to wait for a permission to go into washroom and then take my
medications from there. Also, going to a DOT center every Monday was difficult as I had to
skip my school for that. Then I faced side effects of the HIV and TB treatment together.
However, I am grateful that amidst the struggle, I was very fortunate to have a great
support system from my family and close relatives who ensured that I get proper nutrition.
It was a very challenging situation then and I have learnt a lot but I am still scared of
acquiring TB again. I have since suffered different opportunistic Infections but they were not
as devastating as HIV and TB.
In 2019, I got terrible side-effects from the HIV medicines that I was taking, I was detected
with IGA Nephropathy in December. I was hurt and the only thing I wanted to do was to cry
but I could not, I had to stay strong and pretend to be happy as I had my parents in front of
me holding my hand. I worried about the expenses spent on treatment and started thinking
about my death and what would happen to my parents as I was an only child. It took me few
days to accept the fact and face the situation. This time, I had to push myself harder to stay
strong.
The lack of clarity and pre-treatment information and limited my understanding of the side
effects which harmed my kidneys after six months on treatment. I got kidney failures, and
this is just one example. I know there are so many other life threatening side effects that go
unnoticed. We need to bridge this gap.
My struggle was not yet over. My immune system was totally compromised and even after
taking precaution, I was detected positive with COVID 19 in July 2020. The diagnosis came
with another stigma burden as I had to share my medical history with new doctors. I
explained that I had chronic Kidney disease, I am HIV positive and I am a TB survivor. The
doctor advised me to go to a private doctor. All the relatives and close friends started calling
me as they made up their mind that this time I will not survive.
A constant high fever for almost 16 days along with diarrhoea brought a lot of weakness in
me. In addition to my ART, my kidney treatment and bundle of other antibiotics. I took 26
Pills a day, it was like a war going on inside my body. My oxygen level was maintained
throughout. The doctor I consulted was very helpful. He helped me throughout my COVID19
journey which brought a lot of positivity in me. A supportive attitude from a doctor helps a
lot in dealing different health challenges.
We should appreciate the efforts of doctors, government and stake holders for managing
and giving COVID19 as first and foremost priority. We should have the same commitment
towards TB.
We definitely need better quality counselling, nutritional support, sensitisation of people in
health settings and most importantly bring affected communities or TB Champions on board
in to support policy making programmes.
My country India has seen the worst cases of TB in the past. We have lost many TB
champions, children, youth dying from TB every year. There is urgent need to change the
strategy that is being employed to end TB. Clearly, we are missing a piece in the puzzle. The
clock is ticking and as promised by our Prime Minister of India “Year 2025 is not far and we
cannot blame COVID for not making India free of TB by 2025”
