My story is both remarkable and unremarkable. At university, there was nothing noteworthy about me or my experience. I was a smart student but not one that worked particularly hard compared to her peers, nor one that massively excelled with average input. I did not experience sexual abuse or violence whilst at university as so many other young women do[1]. I had not endured abject poverty, violence, or any other adversity I often see people use as a barometer of how “legitimate” their own difficulties are.
I sampled a year of a law degree, before deciding it was not for me and re-enrolled to pursue psychology the following year where I met my best friend. Coming to the end of university I felt excited. I had a new job in marketing with newfound financial independence, a new boyfriend, and a new fancy apartment with my friend and felt that life was full of opportunities. At least, if you would have asked me at the time, that’s probably what I would have told you. It’s only been in retrospect that I’ve come to understand this was not an accurate representation. It wasn’t a full picture and what I was ignoring was an inconvenient truth.
A little after finishing university and starting my full-time job as a marketing manager (perhaps prematurely promoted by the small firm I’d been working for during my third year of university) I started to get recurrent urinary tract infections. I’d had many before when I’d been a child and then again in adolescence. Antibiotics had always done the trick but this time they were not working. At least not completely.
The severe, searing and burning pain that came with emptying my bladder had subsided into a dull, constant heavy pressure in my bladder and a near-constant urge to go and urinate. I was not getting relief from emptying my bladder and a particularly traumatic urodynamics test later down the line showed that my bladder was actually functioning “normally”. No matter what I did, I could not escape these invasive physical sensations and now I feared going to the toilet. I also feared sex. Socialising. Exercise. I couldn’t be sure they wouldn’t bring me back into a big flare-up that would see me stuck to the toilet with no other recourse.
The happy, care-free uni student was no longer there. In her place was a worried, burdened, miserable person, socially withdrawn and, I’ll admit, resentful. Resentful that everyone else in the world seemed to be able to go to the toilet and relieve themselves without fear. Free to drink as much alcohol or acidic drinks or whatever else, without fear of repercussion. Free to engage in a “normal” relationship with their partners without worrying that sex would exacerbate things.
About 6 months into having the ongoing physical discomfort and an increased need to urinate, I started getting cluster headaches. I’d had an episode of them once before, awoken in the middle of the night to the feeling that I was repeatedly being shot in the head. Just to make my life harder, they had returned. So now I couldn’t push through and go to work because the pain was excruciating and there was nothing I could do but hide in a dark room, hoping they would go away. No medication touched the sides. They were coming every day to every other day.
At this time, my bosses were frustrated. They’d hired a young go-getter, and they’d gotten someone who was barely able to work. When I was there, I’d turn up, face drawn and pale, greasy hair and creased in on myself. Not a great selling point for clients. I felt wretched. When the migraines started, my dad came to get me from Leeds and took me to his place. This was not an uncomplicated experience in itself, but what did happen during the course of this stay, was a fundamental turning point in my journey.
My dad, a psychiatrist, was studying a Masters in mindfulness. As part of this masters, he was practising daily. He asked if I wanted to join him. Again, resentful and angry, I declined initially. How would mindfulness help me when I had a physical issue that no doctor seemed to be able to get to the bottom of? Fortunately, he persisted and his partner, a clinical psychologist, specialising in chronic pain, talked to me about the role of the central nervous system in persistent sensations, such as the ones I was getting. It also made sense that a hypervigilant nervous system would impact on over-active bladder symptoms. I had some vague background knowledge of how this may work from my health psychology module during university. I decided to give it a try. At this stage, I felt I had nothing really to lose.
It was hard. I felt even more aware of how my attention was constantly dragged to the areas of discomfort and I felt helpless. And yet, I also noticed the slither of something slightly different. When I turned towards the sensations, they changed. They didn’t go, but they changed and this was significant after so long of feeling a blanket, heavy wall of bladder pressure. It felt like my brain was recalibrating something as I allowed myself an exploration of the sensation with curiosity.
During these practices, I also noticed how tense my whole body was. How my jaw automatically clenched. To this day, I use this as a marker of how much stress is cumulating within my mind and body. It is a marker that I need to put some things down, albeit, expectations that exist in no other form but thought. As I turned towards these physical experiences, I notice how they unfurled. I took great comfort in this. I had an unarticulated sense, that what I was doing in these moments was caring for my worried, anxious body.
The other thing I became aware of during these practices, was how my mind raced from one scary thought and eventuality to another. It was relentless. A torrid stream of horror story “what ifs”. When reflecting on my practices, it made sense to me that these thoughts had an impact. Again, from my health psychology module, I had learnt about placebo and nocebo; how cognitive expectation can cause neurobiological changes resulting in physical bodily experiences. That is not to say I felt I was causing my symptoms by having these thoughts. I was however aware, that they were adding a substantial layer to a range of other factors. It could only be helpful to remove this layer, I thought. Lighten the load, at any rate.
When I returned to Leeds, it was to see a psychotherapist that my dad had found through his network. We wanted someone who used mindfulness. As though my brain knew what was in store, it cooked up a lovely migraine for me for the first session. I considered cancelling but reflected that I could not guarantee I wouldn’t have another one for the next appointment anyway, so I persevered. It was not lost on me that my migraines had subsided over the course of the week with my dad and now that I was returning to my reality, they had returned.
To cut a long story short, the psychotherapy experience was not a good one. It seemed a Freudian approach in which I got the impression that my therapist was using the working hypothesis that my symptoms were “psychosomatic” (a word I am now rather allergic to) and they were caused by some deep-rooted childhood trauma. He provided no practical advice or skills on how to approach my pain.
Nevertheless, I persisted with the mindfulness. I, along with the patient support from my boyfriend (now husband), coaxed myself back into socialising. I confronted the fact that I hated my job. I found exercises that I could do without causing symptom flares. Gradually the symptoms reduced. They didn’t go. But they were a lot less. My migraines were gone. This drove me to consider resuming my studies in health psychology.
The next part of the journey is one for another post. As I write this, I am chronic UTI symptom-free, after 2 years of symptoms in some shape or form. I credit this to lots of factors; physiological (biological), psychological and social. This has formed the basis of my research interests and clinical pursuits to date. One of the fundamental parts of this journey to recovery for me was understanding how my body works and how psychological experiences feed into physical experiences. In my clinic, I work with women with chronic UTIs empowering them to use this link to their own advantage in order to improve symptom experience.
To come full circle, the best friend I made in uni when changing from law to psychology is the same best friend who I have now collaborated with to gather important research data from women experiencing chronic/recurrent urinary tract infections. Hannah Poulter is a researcher at Teesside University, who is completing her PhD by publication. We have big ambitions for improving the care and support available to women with chronic/recurrent UTIs.
The truth is, urinary tract infections are the second most common infection, the first most common, being a cold. Chances are, if you’re reading this, you have had or know someone who has had a UTI and it may be much more likely than you think that you know someone who has had this recurrently. We are hoping to hear from women at all stages of the journey, including those who have recovered. So please consider sharing our survey.
If this resonated, please do share. I found that hearing others’ stories can really help when feeling isolated.
References
[1] Phipps, A and Smith, G (2012) ‘Violence against women students in the UK: time to take action’, in Gender and Education 24(4), 357-373 DOI: 10.1080/09540253.2011.628928