I was 19 when I first started to experience abdominal pain, fatigue, urgency and bleeding when going to the toilet. At first, I thought it was stress – I was working, studying and not sleeping a lot because of noisy neighbours, not to mention taking a host of antibiotics for skin infections.
The doctors I saw dismissed my symptoms as a stomach bug, then a lingering stomach bug, then IBS and then, more shockingly, ‘just hormone related and common for women my age’. It wasn’t until I was unable to leave the house due to urgency and anxiety (and my Mum was firm with the hospital about the eight-week waiting list) that I was scheduled for a camera to look inside my bowel. The findings came in a letter that I opened alone in my bedroom. It read that the camera’s findings indicated I had Crohn’s disease.
What was Crohn’s disease?
Well, Crohn’s disease is a form of Inflammatory Bowel Disease (IBD) that causes inflammation in the digestive system. It is a lifelong, chronic condition that is often managed with strong medication and surgery. Symptoms can include fatigue, weight loss, skin problems and changes in bowel habits from constipation to diarrhoea and bleeding.
“After receiving the letter I felt alone, scared, ashamed... I hadn’t heard of Crohn’s, so how could I explain it?”
After receiving the letter – and some frantic googling and searching for other people with the disease – I felt alone, scared, ashamed and reluctant to tell anybody about my condition. I didn’t understand what was happening to my body; I hadn’t heard of Crohn’s disease, so how could I explain it? Besides, it was a disease of the bowels, and people don’t talk about their bowels. It wasn’t polite, or ladylike, and popular toilet spray adverts would have me believe that if I could just have my partner believe I didn’t poo, it would ‘save my relationship’. So how could I talk about it?
To my surprise, here’s what happened when I did.
Firstly, talking openly about my bowel disease encouraged others to ask questions. First, my friends and family, and then strangers. I would be open in situations to help myself and avoid stress or awkwardness later on. I would tell people if I couldn’t commit to plans, or needed to go home because of the pain, and explain how my Crohn’s was affecting me.
It was hard to let go of the shame but the more I opened up, the more I saw that it raised awareness. I liked to think this would help the next person with IBD, who didn’t have to explain themselves because one more person would know and understand. Talking openly about my bowel disease ultimately educated others. I learned that once people knew about IBD, they were more understanding than the shame in my head would have had me believe.
Surprisingly, talking openly about my bowel disease encouraged others to talk openly to me about their bowels, too. Although I didn’t originally sign up to be the ‘poo woman’, people who I hadn’t spoken to in years would come to ask things like ‘is this normal?’ and ‘I have to have a colonoscopy, what should I expect?’
Although I can’t – and don’t – give medical advice, talking openly encouraged people who were previously too embarrassed to get their symptoms checked over by a doctor. Bowel diseases are an increasingly common health problem in the UK, from irritable bowel syndrome to coeliac disease, inflammatory bowel disease and bowel cancer.
Early diagnosis in both IBD and cancer can aid successful treatment, and being too embarrassed to talk about it hinders this early diagnosis. Talking openly about my bowel disease helped to get rid of the taboo surrounding one of our major organs. The bowel taboo should not stand in the way of often life-saving diagnoses.
Talking openly about my bowel disease helped me to find my voice. It taught me how to use my voice to break taboos and break free from the unrealistic beauty standard of not having a digestive system. It taught me to use my voice to look after myself and get the help and treatment that I needed. It taught me to use my voice to stand up for what is important. Mostly, it taught me to use my voice to help others feel less alone.
“Acceptance of a life-long disease is not straight-forward, but talking openly about my symptoms and feelings helped me accept my body and to my life”
Most importantly, talking openly about my bowel disease also helped me to understand, and then accept, it. Once I no longer felt the need to hide it, I wanted to learn more about IBD. Knowledge is power, as they say, and learning about my disease helped me to feel more in control, more able to look after myself and make my own decisions. Acceptance of a life-long disease is not straight-forward, but talking openly about my symptoms and feelings helped me accept the changes to my body and to my life. When conversations about IBD became commonplace with my family, this normalised the disease and helped me to accept its part in our lives.
After accepting Crohn’s as a part of my life, talking openly about it led me to wonderful opportunities. Although I am aware that meeting other people with the same condition isn’t for everyone, talking openly about my IBD led me to a rewarding opportunity to work with, and support others going through tough times. It taught me to listen, without talking. It led me to meet some of the kindest people, who I now consider friends for life. In a strange twist of fate, through talking openly about my bowel disease, I learned that everybody is going through something – and to be kind, always.
Anna Gaunt is a freelance writer and activist. Follow her on Twitter at @anna_gaunt
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