Fatima Karmadwala’s story: No one should feel scared, be stigmatised and financially burdened when being diagnosed with tuberculosis, as I did
Written by Fatima Karmadwala
I was scared, frightened and unsure what a diagnosis of multidrug resistant (MDR) tuberculosis (TB) meant. I was called home three days in to my second semester of my second year at university with this diagnosis and immediately put into a negative pressure isolation room for 50 days and faced eight months of intravenous drug treatment. I was a 20-year-old student who should have been living the best days of my life. No one told me what MDR-TB was, I had to search the web for information on my own condition.
I had been feeling unwell, including night sweats and severe weight loss for two months. I visited my local doctor at home and emergency care at my local hospital. I became unable to continue working part-time but was determined to continue with my studies.
When isolating, I was only allowed one visitor. My mum would pay £5 a day to park at the hospital to visit and care for me. I was not made aware of the fact that I could have received financial support for parking payments. Nobody from the hospital would talk to my parents about what drug resistant TB was. My mum had to do everything for me. This included washing my hair with a jug of water as maintenance staff refused to come in and fix my shower because I was an ‘infection risk’. Staff left my food on the bin outside the door to my room as they were too scared to come in. Only a few nurses were ‘fit tested’ with masks on my ward. My consultant refused to visit me because wearing a mask was a hassle, but I wonder if they wore one during Covid-19. For those that did enter my room wearing masks, I didn’t recognise any of them when I was discharged as they were saying goodbye because I had never seen their faces!
My whole university year was screened for TB because of my diagnosis thus becoming aware that I was ‘the TB patient’. Including knowing this in the halls of residence I had just moved in to. I developed social anxiety. I felt like everyone around me could see my PICC line used for intravenous treatment and knew that I was sick. I wish that there had been more support after being isolated for so long. I missed being a student through isolation and then visiting hospital three times a week for hearing tests, for leg/feet pain because of the side effects of the TB drugs I was taking and to receive my medication via my PICC line. The university assessor refused to see me and immediately left when she found out I had TB in case she caught it. There was no help with devices to record lectures as promised. I was tired and easily became breathless. An elderly man told me I should be taking the stairs and not the lift as I was a young woman and I took the space of others in the lift. He couldn’t see my illness. He couldn’t see my PICC line, my TB, my lungs. I felt helpless but struggled up three flights of stairs every day as I didn’t want anyone else to say anything.
The financial pressure on my family was huge. I was told not to attend a Department of Work and Pension assessment due to being an infection risk. We received no funding support to help attend the hospital three times a week costing over £650 for intravenous appointments. I was unable to work and contribute financially whilst I received this intravenous medication. I was refused financial support through Personal Independent Payments as my condition was not seen as anything huge. They rank you 1 to 10, 10 being severe. My illness was marked a 0, in every field. TB was not a big enough illness to them.
This experience has changed my life completely. I have become an activist and an advocate for all those with TB having experienced misinformation, a total lack of understanding from my local doctor, my employer who fired me for having TB and the Government department who gave me no assistance financially to help attend appointments whilst I was unable to work.
I was lucky enough to have my care transferred to Liverpool, where I was supported by amazing staff, a consultant better than I could have imagined and people who see TB as important.
Having studied psychology during my treatment I believe my experience has motivated me to work with people who have TB and are facing some of the same difficulties I have had to overcome. I am determined to show how TB needs to be understood by breaking down some of the ignorance I have witnessed from within the health service, at work and within my community.
Fatima Karmadwala is Affected Community Co-Lead of UKAPTB. She has been an ally and advocate for all TB patients since being diagnosed with Multi-Drug Resistant TB in 2018. She has participated in numerous meetings including the international Social Protection Action Research and Knowledge Sharing group (SPARKS) conference and Liverpool School of Tropical Medicine Annual General Meetings sharing her lived experience of TB. She is passionate about making a difference and ensuring the voices of the patient and their families are heard to ensure a patient-centred approach to all TB activities. Her personal journey motivated her to study International Public Health MSc at the Liverpool School of Tropical Medicine focussing on research into catastrophic costs for TB patients in the UK.
