I know something's wrong. I am worried but I'm too embarrassed to see my GP.
How many times have you heard words like these?
Maybe you've said it because you have felt the embarrassment that comes from the things we don't like to discuss, the things that worry us but we cannot talk about, the things we cannot bring ourselves to say to our partners, our family or even our GP.
Relationships die when communication stops - what is left unsaid becomes the concrete block that drags them down. Sometimes only one person is aware of the elephant in the room. Relationships between friends or between members of a family can suffer the same fate - ruined by what can't be discussed.
So why would it be different when it comes to the things that can actually kill? Taboos.
Leave aside the pain or symptom for a moment, this is about whether people feel comfortable simply starting a conversation about blood, poo or bowel movements. It seems almost farcical that rather than have an embarrassing conversation, a person who has found an odd lump somewhere, or has had problems with their pee or poo, could end up dying because their diagnosis comes too late. I remember a former colleague admitting they should have sought help sooner but they were too embarrassed. Their life was cut short because they felt they couldn't discuss their intimate anatomy with a person who discusses intimate anatomy every day, their GP. It's not their fault, we are conditioned to feel that embarrassment. Have you ever been slow to seek help and when eventually you have been forced to by the pain, you are told your condition is quite common?
Twelve years ago, I had the worst pain inside me I'd ever experienced. I couldn't understand where it came from, and despaired of what I could do to just make it go away. I was embarrassed to seek help, and I spent days and nights in pain, hoping it would change. Eventually I realised that I needed to ask for help. I was given support and understanding and the doctors and nurses never made me feel embarrassed. Diagnosed with Crohn's disease, I was treated and the pain reduced. Although an inflammatory bowel disease, my Crohn's is now well controlled.
I am lucky. There has been a dramatic increase in recent years in the number of children and young adults being diagnosed with inflammatory bowel disease (IBD). I work for a charity, CICRA, providing support for children with Crohn's and colitis, and their families. We also fund research for better treatments and an eventual cure. The children we support like to share their story to help others in a similar situation and it worries me that many have a worse experience than I did. One recently said:
Having hidden how ill I was to my parents, growing up I felt very embarrassed by the fact I couldn't predict when I would need to go to the toilet.
It's not uncommon for children to say they didn't tell their parents when they spotted blood in their poo and to struggle in pain for months before asking for help. Even after diagnosis, they don't go out as much because they are worried about urgently needing the toilet.
The taboos we hold in society have an impact on these young people, not just in getting diagnosed but in the life they lead afterward. How long do they have to suffer in silence?
We are running a survey during September to ask children and young people affected by Crohn's and colitis about the things they wish were different. But one thing we know already - it's bad enough having to deal with an illness that causes such havoc with your digestive system, it's worse if taboos mean you feel isolated. Surely we need to change our approach if people are not seeking help because they couldn't talk about poo.
We know taboos can be busted - recent mental health campaigns have seen the start of a shift. So, if someone wants to talk about poo, let them! If someone needs to leave a work meeting or a lesson at school to use the toilet urgently, don't shame them, laugh at them or consider them anything other than a human being just like you! And if you are worried about your own bowel or bladder habits or lumps that you think are new, get them checked out - embarrassment is not a reason to die!
Let's #talkaboutpoo, let's talk about our gut feeling, let's encourage our children to discuss things that are as natural as breathing. Getting rid of these taboos will save lives, save money through quicker diagnosis, improve quality of life and make for a friendlier society.