This is a guest blog by TB survivor Fatima Karmadwala, sharing her experience speaking at Results UK’s and the APPG for Global TB’s parliamentary reception for World TB Day.
I have gone through a lot of changes in my life since when I was diagnosed with Multidrug-resistant TB (MDR TB). I was diagnosed in 2017 just after completing my first year at university in Liverpool. It was also my first time living away from home. I started noticing symptoms a couple of months before the end of my undergraduate year, however, after countless visits to the doctor, I just blamed my extremely intense cough on the weather change, and my rapid weight loss on the fact that my gym classes were working.
In the UK, unfortunately, TB is not seen as a major threat. Until you are diagnosed with it. That is when you begin to see a change in the way people treat you. I suffered a lot of stigma pre-diagnosis, during treatment and unfortunately, even now, years on, the stigma never leaves.
It started the day I was diagnosed. Hospital staff rushed to get me into a negative pressure room without explaining to me what was wrong with me. I remember sitting in my room, trying to Google the different kinds of tuberculosis, in the hope that I could recall which one the doctor had briefly mentioned. I researched my own condition, because they were not willing to give me the time of day.
I spent 50 days in one room. My lunch was left on a bin in the hallway outside of my room, because staff members refused to wear a mask and come in. I felt like I was not worthy of that meal, like I was not worthy of having a normal conversation with, because I had TB.
My father was born and raised in India, so English is not his first language. He struggled to understand why his daughter was isolated for so long, or if she was even going to survive. He asked to sit down with my consultant, who told my dad he was welcome to just join him on his rounds. Did my father not deserve a sit down conversation? My own consultant refused to come into my room to update me or speak to me because wearing a mask was too much effort. He was a consultant in infectious diseases, what was he expecting? Everyone wore a mask for Covid, but for some reason, it was difficult for them when it comes to TB.
After leaving isolation, I faced issues with people leaving the room once they knew I had tuberculosis. I wish I stood up for myself. This is my biggest regret. Yet at the time, it felt like such a vulnerable state to be in.
I decided to continue with my studies which meant I had to change my entire medical treatment to Liverpool. This was the best decision for me as the care I received in Liverpool was exceptional. I had to attend the hospital three times a week for my intravenous medication. The room was up on the third floor, which meant that I took the lift due to getting very breathless. One day, I encountered an elderly man whilst waiting for the lift, who told me I was still young enough to take the stairs and that I was taking space for other people who “need” the lift more than me. I took the stairs for weeks after this. I suffered through the breathlessness because of his one comment. To this day, I regret not speaking up. But I knew, if I told him, and the six other people in the lift, that I had TB, they would be terrified of me. I was afraid because of the stigma that is attached to TB, because there isn’t enough awareness or education on TB.
I am now happily married and have two little children of my own, but I had many occasions in life where I didn’t see this stage to be possible. This is why I speak up now as a TB survivor to help patients understand that it does get better and giving up is not an option.
I recently had the opportunity to share my story in London at the House of Lords ahead of World TB Day 2024, marking a big step towards the fight to end TB. I was extremely honoured to be able to speak about the stigma attached to TB. Since the stigma I experienced, you never feel 100% comfortable mentioning you had TB, but speaking to a room full of people who were willing to listen, learn and change was refreshing. It still takes me by surprise, in the best way, that almost 6 years since my MDR TB diagnosis, I am remembered by people who take interest in my story and allow me to be a part of such incredible opportunities. I absolutely love it!
I spoke about how stigma can make an individual feel. How difficult it is to navigate through life when people can be so insensitive, because the symptoms of TB are not visible. I also focused heavily on how some health care staff can lack empathy. During my time of being isolated in hospital for 50 days, I suffered a lot of stigma from staff at the hospital. Before we educate the members of the public to be kinder towards individuals with this life-threatening condition, we must educate the staff. It starts there.
Although I had done some public speaking previously, I was nervous. Nervous about leaving my baby who relies on me for feeding for a few hours, nervous to be speaking at the House of Lords! But I was excited. So excited. I was proud of myself. I was going to do something big. This was something I told myself I will tell my children about when they are older. I was that proud.
My voice was shaking the entire speech, but I was passionate about what I was telling the people at this event. I was determined to get through to them what it was like to live through this stigma. The response I received at the end of the event was worth it. I truly felt like it worked. Sharing my experience, had an effect on these people and maybe change is possible.
I met some very inspiring people at this event who I hope to have the opportunity to be around again. I am extremely grateful to the team at Results UK for choosing me to be a part of such a great event and I look forward to many more opportunities in the future where I can use my journey of battling MDR-TB to hopefully end TB.