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.
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 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 :)
Congratulations! You are oh so courageous! And helping lots of other patiants this way, I am sure! Well done!
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