Speaking Publically About My Bowel Incontinence - Coloplast Live In London June 2016

Earlier this year I made a commitment to myself, which I wrote about on our blog, that I wanted to use 2016 to start getting involved in raising awareness of bowel incontinence, the medical condition I have lived with since birth. I was therefore very happy and also a little nervous when I received a call from Coloplast (who make the Peristeen Kit I now use daily to flush my bowels) inviting me to be patient speaker at an event in London last month. Getting the chance to speak to a room of 50 or so continence care nurses about my experiences of growing up and hiding my incontinence was a big challenge for me on many levels but it was also a very welcome one. I wanted to take a moment to share a few of my thoughts and feelings about my first time speaking to a live audience about my life and the effect my incontinence has had on me.

I've given an overview of my 'Incontinence Story' before, so I don'r want to repeat too much here, except to say that bowel incontinence is a condition that I was essentially born with and which I chose to hide from a very young age until I was almost 30 years old. It was only in my late twenties that I finally sought help and embarked on a long and sometimes painful journey of finding a better solution than having countless daily accidents.  Yet even when I did have a practical solution to give me some control over when I went to the toilet, I still didn't recognise the real impact that all the years of hiding and the habits I had developed to do so had taken on me. It is only very recently and primarily through writing about my experiences that I came to see how deeply every aspect of my physical and emotional life had been affected. This is the story I wanted to share.

As I travelled on the train into London the night before the event I was feeling very excited at the day that lay ahead and also quite nervous about what I'd actually say? As an academic many years before I'd give talks in lecture theatres, but that had always been about impersonal science stuff. This felt different. I'd have to speak for half an hour about a topic that I had spent almost three decades avoiding so it was a big change for me. Yet I also knew it was what I needed and wanted to do and that commitment helped to balance the nerves I was feeling.

Later that evening, after a lovely dinner and meeting a handful of the people I would spend the next day with, I resolved to sit down and plan my talk, putting together a few PowerPoint slides to help keep me focused on the story I wanted to share. This in itself was a very cathartic process. Before I started making the slides I felt I knew the shape of what I wanted to talk about, but it turned out there was just too much I wanted to say. Too many stories I wanted to tell. Too many memories. Over the hour or so I spent making some slides I found myself focusing down on the message behind the stories. I suppose there was a small part of me that had been excited to speak not only as I feel called to raise awareness, but because it was also a chance to share my 'hero story'. The story of all of the things I had achieved in life 'despite' my incontinence. Planning my talk helped me to get through that a little more and work out what I really wanted to say and why I wanted to say it.

The next morning I woke up nervous so decided to let out some energy with a run. Besides, it's not often I go to London. Jogging around Buckingham Palace, Westminster, St James Park etc. with a camera in one hand I must have looked like a goggle-eyed tourist, which I suppose I was. Even when I got lost on crowded commuter streets while trying to find my way back to the hotel and event venue I was still enjoying exploring. At least my talk wasn't until the afternoon.

The event itself was incredibly well organised. Coloplast are very active in outreach, training and support of patients and nurses and this particular event (as far as I understood it) was for nurses who were already specialising in continence care or who were considering specialising further. There were several streams of talks happening simultaneously and I would be involved in the 'bowel' stream, during which the attendees would hear about some up to date research, nurse experiences and also my story before getting hands on with some Peristeen kits.

Although I wasn't on until the afternoon I had asked to sit in on the rest of the day to get a sense of other activities and research in bowel and continence care. Although I have been incontinent my whole life I have stayed very ignorant of research and care options in this area as I was too busy pretending I didn't have a problem. The day was very eye opening for me. Even though it only touched on a tiny fraction of what is happening, what struck me the most was the enthusiasm, energy and commitment to improving patient quality of life that exists against a backdrop of funding and other logistical constraints. Everybody in the room, organisers, speakers and attendees, were focused and interested to know more with a shared goal of improving peoples quality of life. Having spent much of my own life under the misapprehension that 'nothing could be done', I actually found it very moving.

When time came for me to talk after lunch I felt (surprisingly) very calm. Having spent the morning in the room and so knowing the real compassion the audience had for their own patients it was a very supportive environment for me to speak this first time. I admit that in the opening minutes, as I began speaking about my decision to start downplaying and then outright hiding my accidents at infants school, I occasionally caught the eye of someone watching and their sympathetic, caring gaze made my lip quiver and my voice crack, but I managed to keep my eyes dry. Not that it would have mattered if I'd cried I suppose. Over the next half an hour I worked my way through my life stages, from starting to hide through to believing I didn't even have a problem and ultimately the far-reaching consequences that had in other areas of my life.

Having written an entire book manuscript over winter on this topic, half an hour was really a very short time to speak and it was over in a flash. Before I knew it I was wrapping up to warm hearted applause and some very insightful questions. This level of engagement, which continued after the event as well with many of the nurses coming up to me to ask more questions and give very kind and generous feedback on how much they had enjoyed my sharing. As one nurse told me, hearing stories like mine helps to remind people that there is an entire life behind the patient they maybe only get to see once in a busy clinic and that working out the best treatment or support they can offer needs to build on that life as much as possible. This was incredibly rewarding to hear.

Travelling away from London I honestly felt as though I had spent the day with a sort of extended family, united with a common goal. I was buzzing, not just with the adrenalin of standing up to speak in front of people, but with the knowledge that so much effort was being invested in not only continence care but in so many other areas of patient support. It can be easy to forget this with the way the media reports on the problems in healthcare, but these structural problems don't reflect the individuals on the ground that care so much.

Although this was only my first experience I sincerely hope I get the chance to speak again at an event like this in the future and I'm very grateful to everyone I met in London last month and to Coloplast for organising this event and inviting me.

Sorry I don't have any pictures of the event, but here are my tourist shots of London :)








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Adventures In Life, Love, Health, Travel... & Puppies!: Speaking Publically About My Bowel Incontinence - Coloplast Live In London June 2016
Speaking Publically About My Bowel Incontinence - Coloplast Live In London June 2016
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Adventures In Life, Love, Health, Travel... & Puppies!
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