Living with a Chronic Illness - A Hidden Disability
In the summer of 2015, it became apparent that I did not possess a normal functioning bladder. I won’t bore you with the details, but I was making frequent trips to the toilet, was experiencing severe pain, and was constantly and unnecessarily being pumped with antibiotics (which I became allergic to as a result). When discussing my discomfort with my grandmother, she suggested that perhaps I had been suffering from these symptoms for most of my life and that it had suddenly worsened. Upon reflection, we realised that she was right.
After pleading with my GP for over 6 months, I finally got an appointment to see a consultant. I was ecstatic as finally, someone was taking me seriously. I was quickly diagnosed with Overactive Bladder Syndrome after a series of tests and consultations, and I felt a relief to be able to get to the bottom of an illness that had been plaguing me for the past 6 months.
But the treatments didn’t work. Nor did the medication. I moved to Bristol to start university, and my bladder actually began to settle down. But it was short-lived. The pain and discomfort became unbearable, it was affecting my everyday activities and I became incredibly sleep deprived. I was able to arrange to see a new consultant in Bristol, which gave me hope that I could receive a further prognosis.
After a 6-month wait for an appointment, I was eager to meet my new consultant. But when I arrived, the receptionist explained that it had been double-booked. I was distraught as I had so much hope for an answer. I attempted to call to rearrange over 10 times, left countless voicemails, but received no response.
I had almost given up hope when my grandmother suggested I look into private healthcare. I was reluctant due to the cost, but she reassured me that it would be worth every penny. Eventually, I had an appointment with a Professor at the Spire Hospital. He was able to diagnose me within a matter of minutes, and explained that I had previously been misdiagnosed. Whilst it came as a relief to receive a diagnosis, it became apparent that it was not good news.
I was diagnosed with Bladder Pain Syndrome (formerly known as Interstitial Cystitis). It is a chronic incurable condition by where an auto-immune diseases mimics the symptoms of a urine infection without an actual infection being present. There has been little research into the condition, thus leaving its patients with little relief, let alone a cure. The Professor assured me that there were a number of treatments that we could try, and he set about introducing me to some new medication in the mean time.
At first, the medication was fantastic and offered me comfort. I was able to sleep for 5-hour period at a time. This may seem insignificant to some, but at times, my bladder was waking me every half an hour. I was finally able to go about my daily life with less disruption. I realised that this was something that I would have to learn to live with, but that it could be manageable.
After another 6 months, the effects of the medication began to wear off. They were making little to no difference to the pain that I was in or the frequency that I was going to the toilet. Countless experiences became fraught by the thought of having to make frequent toilet breaks. I began to dread holidays, nights out, festivals, even attending lectures and going to work. The thought of not being near a toilet and having to endure unbearable pain was drastically affecting both my work and social life.
As a last resort, I began researching for private experts in the field across the UK. I found a reputable consultant in London, and we arranged for an appointment to investigate into my condition further. The appointment went better than I had hoped, and whilst I knew that the likelihood of a cure being found was slim, there were a number of options that I could explore as my condition worsens throughout my lifetime.
I endured a number of uncomfortable tests (special thanks to Charlie for holding my hand almost every step of the way), and the prognosis finally became better. However, the next step was to have a very invasive procedure. Whilst I did not mind the thought of the operation, the issue with Bladder Pain Syndrome is that such procedures cannot guarantee relief of symptoms. In fact, they can make the symptoms worse. After thinking it over for a number of months, I decided to wait until my bladder became so unbearable that I would have no choice but to have the operation.
In the mean time, the consultant explained the condition in depth, and I learned that the symptoms could be triggered by inflammation in the body. I began researching into ways to reduce such inflammation in the body and found that meat and dairy were a huge trigger. I slowly began to eliminate both from my diet, and the results were astonishing. I am now almost 1 year off my medication, but my bladder function is better than it has been for 5 years. Whilst I still experience extreme pain and discomfort at times, it is far less frequent and much more manageable. I have learned to communicate my needs with whoever necessary (such as employers or events organisers), and I can finally enjoy my life again.
I want to thank my mum, my dad, my nana and my boyfriend for their endless support and advice over the years. When the condition had whittled me down to my lowest, they picked me back up and showed me that life is too short to allow these setbacks to define us. I would not be where I am today without their love and guidance.
