At around 7 o’clock on Friday last week, the third day of World Anti-Microbial Awareness Week, I went downstairs and put a tray of oil in the oven to heat up while I showered, ready for the chips I planned to make for dinner. But when I went to the bathroom before my shower, I knew I was in trouble. The familiar panic of adrenalin started to run through my body as I felt my bladder spasm. This anxiety, the fear of pain that UTI brings on, is something that a lot of the people I interview for my PhD research into gender and bladder health talk about and it’s often the thing that I find hardest to hear. I considered my options as the oil in the oven heated up and the kitchen started to fill with the smell of burning oil. I felt my swollen stomach and smelt the familiar smell of chickpeas (the result of protein in my urine.) I saw my bubbly, cloudy urine in the toilet bowl. Friday evening was ruined. I thought about the antibiotics upstairs. A big pack of bright blue and yellow pills, which would almost instantly turn my urine neon as the antibiotics are quickly filtered out of my blood and straight into the urinary tract, making it to the ideal silver bullet treatment for UTI.
But using them would mean enduring a week of intense nausea, it would mean calling the receptionist again and re-negotiating a re-issue of my prescription, cringing as I give her my surname and she realises it’s me again. It would mean £9.15 in the pharmacy, and then another £9.29 for the inevitable thrush medication. And I’d only just been through this the week before last.
For the next three hours, I drank hot chamomile tea, sat on the radiator, and tried to keep myself calm. I handled myself with care. I carefully dosed myself with D-Mannose, a ‘food supplement’ that I buy over the internet and that not only relieves the pain of UTI, but also clears the infection. Having first heard about it from a friend, I am now well practised in balancing the fine line between keeping myself dosed up at all times, and not taking too much. You’ll only take too much once.
I went to bed early that night- your body needs sleep when you have an infection, as anyone who has been ill with COVID-19 will tell you. It’s like a total shutting down to allow the body to focus on its main priority of keeping you healthy. I knew that when I woke up in the morning, that would be the test of if I could manage this on my own, or if I would need to turn to the antibiotics. If I woke in the early hours of the morning, bloated and in pain, then it was game over. I have played this game so many times before.
But I woke up at 8.30 and went straight downstairs to the bathroom. I wouldn’t use the toilet until I had drunk litres of water, and had made sure I was dosed up to the maximum limit of D-Mannose. Throughout the day, I continued this careful dance of care, selecting something to wear that didn’t put pressure on my bladder, drinking extra liquids, taking things slow.
By evening, I could feel that I was getting better. Going to the toilet was easier and I was starting to feel less fragile. I knew I was good; like most of the sufferers I speak to, I know when I have a bladder infection, and I know exactly what to do when I have one. But this was a success. Sometimes, despite my best efforts to look after myself, I can’t keep on top of the infection and I have to have the antibiotics. The slogan for World Antimicrobial Awareness Week 2020 is ‘antibiotics: handle with care.’ But this was much more about handling myself with care than handling antibiotics with care. Not using antibiotics when I need them means a worse infection; higher dose, broader spectrum antibiotics, and a greater threat of AMR. UTIs are scary and they can be extremely painful. The worry of the effects of so many antibiotic courses is equalled only by the worry of what damage these infections do long term, and the worry of taking so many pills, bought over the internet, and with little regulation. Too many women live with chronic or recurrent UTIs without getting help from the people and places they would normally turn to, and it is no way to live.
But I always knew I had antibiotics upstairs. I could wait, tentatively walking a fine line to discover if this infection could be taken care of, and knowing that if it couldn’t, I could turn to the silver bullet. Not un-relatedly to that packet sitting upstairs, I know that when I have spoken my pain, I have been believed. This has given me the space and the entitlement to state my right to antibiotics, my need. As I have begun conducting research into experiences of UTI, I have started to hear experiences of UTI that are different from my white, cis-gender, middle-class experiences, differently racialized, gendered and classed experiences. This year, around World Anti-Microbial Awareness Week, we should ask, as is so often the case when we engage in awareness-raising, what are we asking of people? Who are we assuming we are speaking to? And do people have other choices they can make?
About the author: Eleanor Kashouris is very keen to hear from you about doing an interview if you have experience of living with poor bladder health, especially if you experience racism or gender-based oppression. Eleanor would welcome hearing from anyone who partially, wholly, or has at any time identified as a woman, and will listen and write about your experiences with respect, and with as much collaboration as you wish to contribute. Eleanor can be contacted at E.Kashouris@sussex.ac.uk