After finally achieving remission, I decided I wanted to do something positive with my experience and thought that raising money for charity would be a great thing to do.
Liam
Living with Colitis
My problem is that I have never been very good at asking people for money. There’s also a lot of commonly used fundraising activities and I wanted to do something different. I initially thought about just writing a blog and setting up some sort of funding page to go with it, but as soon as I started putting pen to paper, or I should say ‘fingers to keyboard’, everything started to flow. I realized then that this was much more than just a blog.
I had never written before, although I do enjoy reading and especially like autobiographies and true stories. I decided to do some research and found there actually aren’t many books about people’s experiences with Colitis or Crohn’s. Everything I found was medical-based or about diets and ‘healing the natural way’. I suppose part of me felt I had maybe found a slight niche in the market and I think that helped give me some of the motivation to continue with it.
Before I knew it there were over a thousand words on the screen in front of me and I had barely even started.
Whilst writing, I found great comfort in the memories, both good and bad. Many of which I think I had blocked out from my mind. It was like a personal self-help exercise and some light meditation all rolled into one. However, there were some parts of the book I found difficult to write about. Especially with how I was feeling emotionally and psychologically during the flare-ups and bad times. Even now when I read it again, I think I was probably holding back about how truly low I felt at times. Anyone who has experienced this over a long period of time can probably relate to that feeling of hopelessness, almost like a dark cloud hanging over your head that never goes away. This is something which I don’t believe is given enough care and attention during diagnosis and treatment for Colitis or Crohn’s.
The stomach cramps and bloating are physically painful, but it was always more about the stress and anxiety that followed me around every day.
I eventually finished a draft version of the book and started looking for editors and cover designers and publishers and everything I would need to make the book attractive for readers. Then suddenly, I got cold feet and decided I couldn’t do it. I don’t know if it was my doubts over why people would want to read the story or the embarrassment of the details in the book. Maybe it was a big bout of anxiety creeping up on me or the realization that some of my friends and colleagues were going to find out that I don’t have ‘bad IBS’, as they have so confidently referred to it for years. Either way it didn’t feel right anymore.
One year and three months later from the day I started writing, it was still sat as a draft word document on my desktop doing nothing. I spent some time reflecting on my experience, from first becoming ill, the years of doctor’s appointments and hospital visits, attaining diagnosis and then through all the treatment, until finally achieving remission. Well, I say remission, but I don’t hold my breath. There isn’t a day that goes passed that I don’t feel grateful for being symptom free. I did this for a few weeks, maybe even months before I got a hold of my fears and picked it back up again.
I don’t know if it was the daunting prospect of a national lockdown or the fear of coronavirus looming, but I finally took the plunge and hit the upload button.
Since the book was published in March 2020, the feedback has been amazing. I have sold over 100 copies, which has already outreached all my estimations. I have also connected with hundreds of people through the Crohn’s and Colitis community, mostly within the UK, but also around Europe and North America. I feel grateful for being able to share my story and provide comfort for others, as well as raising money for such a good cause.
I can honestly say it’s one of the best things I have ever done.
