Rachel’s story
Rebecca Hardy talks to Quaker and patient advocate Rachel Jury
How can our Quakerism support us in times of grave need? How do we respond spiritually when gripped with ill-health? Being diagnosed with a chronic illness can be a faith-testing time. Watching someone we love struggle with something unimaginable can provoke profound questions. At the same time, we need the help of Friends more than ever.
When Rachel Jury, a Quaker attender from Bournemouth Meeting, was diagnosed with a chronic illness, she was in ‘a very dark place’. However, the thirty-one-year-old patient advocate from Bridgend, Wales, managed to turn it into something positive – thanks, in part, to the support of Friends. This month she was awarded a National Diversity Award: Positive Role Model for Disability for her campaign work raising stoma awareness. Nowadays, she is ‘happy and thriving’ – but she wasn’t always like that.
Problems started during her third year at university, when she contracted campylobacter from badly cooked chicken. ‘It wasn’t long before I realised I could not empty my bladder and bowel like I used to,’ Rachel says. ‘My bladder was the first organ to fail to function, and, after many urinary tract infections, my bladder wouldn’t empty at all. This, at twenty-one, led me to use self-catheters, which did not work well. Eventually, I had to have a long-term catheter, with a bag attached to my leg.’
Her health problems continued and forced her to stop working as a band 5 therapy radiographer at Bristol Oncology Centre. She says: ‘I really loved my job, but, unfortunately, it wasn’t long before I had to give up my dream career.’ What followed was the gruelling distress known to many struggling with a rare illness: the pain of diagnoses and misdiagnoses, unanswered questions, medication failures and reviews.
Rachel recalls: ‘It took five years to get a diagnosis – five years of not knowing what was wrong and not trusting myself. This was a hard, dark time, but, eventually, the London neurology hospital discovered I had autonomic neuropathy: in particular, a rare disease – pure autonomic failure – where the nerves to my bladder and bowel don’t function as they should, brought on, they believe, by food poisoning.’
Rachel has had many operations, and, in 2012, she had her first stoma formed – an ileostomy. ‘I was twenty-four and I really struggled to accept this.’ Then, in 2015, a bladder investigation revealed the cells had mutated and she was told she needed her bladder removed. A second stoma was created, called a urostomy. Rachel was twenty-eight at the time.
Amazingly, however, she regards this as the ‘best thing that could ever have happened’. She says: ‘In getting rid of the catheter, I now have my life back.’ Around the same time, a friend suggested she visit a Quaker Meeting. ‘I was welcomed with open arms, but I struggled with the silence, and being with myself, God and the Light. Gradually, however, I felt accepted and nurtured. The Meeting felt like an invisible hug, at a time when I felt lost and broken. I’m not ashamed to say I cried in a few Meetings. I realised I was searching for my ‘‘spiritual’’ place, and, in Quakers, I found it.’
What does a Quaker Meeting give her? ‘It’s hard to put into words, but it’s offered me a profound acceptance of who I am. Exploring my “spiritual journey” has helped me accept my circumstances and stoma bags. It’s enabled me to support others. I will forever be grateful to the people who introduced me to Quakers, and for all the Friends who support me.’
These days, Rachel says she has a ‘deep sense of happiness’. Last January, she started a blog, Rocking2Stomas, and, later, a Facebook group, which led her to meet her partner, who also has an ileostomy. ‘So together we are rocking three stomas!’ She continues: ‘Little did I know how much this would help me accept my own stoma bags. I have a purpose again. I’ve done twelve public speaking events this year, and been to Copenhagen numerous times to talk about my story. I’m open about my stomas to break stigmas.’
After nearly thirty operations, Rachel regards her stoma bags and scars as ‘badges of honour’. She says: ‘They tell a story of survival and resilience, and show how miraculous my body is. I also have Quakers to thank for believing in me, when, at times, I didn’t believe in myself.’
