Lucille Whiting has ulcerative interstitial cystitis, a condition which creates red bleeding areas form on the bladder wall. It causes severe abdominal pain, a sudden need to go to the toilet and a need to go more often.
Our series speaks to someone living with an invisible illness about what it’s like when people can’t see you are unwell.and how people expect her to just get better.
Lucille was diagnosed in January this year but had been suffering from what doctors thought was recurrent UTIs for 19 years. ‘It was briefly investigated after a few years, as I found certain antibiotics no longer worked. I had a bladder scan which showed nothing, so I went back to taking more antibiotics.’Lucille went on to get married and they started to try for children. She also suffered from recurrent miscarriages – over the course of 13 years, she had five children and nine miscarriages.She explains: ‘I was in an indescribable amount of pain all the time. Imagine a bad urine infection.
‘Not for one second did I expect her to say they knew very little about my condition and it couldn’t be cured, just managed.‘It took the wind right out of me. There’s a big part of me that thought now they had the answer, they would just be able to ‘fix me’. ‘The pain is moderate to severe, depending on everything from exercise to what I eat and the weather outside.
‘I need to always make sure I’m there to help with homework and for when they need something. I won’t ever let them miss out on anything because of me.‘I’m up for the school run and I’m out for swimming, music lessons and other after school activities. Most people would never know unless I’m looking particularly tired and washed out.‘Apart from activities with the children, I rarely leave the house. I don’t go out socially in the evenings. That was something I gave up a decade ago.
‘I can’t ever medicate to the point where the pain leaves me completely because I have to balance my pain relief with the side effects of the medication. ‘I’ve had to learn how to push it to the back of my mind and carry on because I know there isn’t an end to it. Life carries on regardless.’
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