Living with an invisible illness is tough and most often we endure silent battles; we may look well on the outside but inside we are suffering.
For some, sharing their experiences and stories is tough. I get this – it is personal, private and at times overwhelming. Wanting to share and talk takes courage and it opens you up to being more vulnerable. It opens you up to judgement and discussions; sometimes it’s something we do not want to have to deal with.
I have always enjoyed writing. Since my school days, I’ve found writing a therapeutic experience. I never really wrote for anyone but me; that changed in university when I wrote for grades and to fulfil my course requirements. And whilst I struggled to find employment after my degree ended, I never stopped writing.
I was a year out of university, working in a shop when I became ill. Suddenly and overwhelmingly; I spent time in hospital, enduring some horrific experiences and was then diagnosed with Crohn’s disease. The overwhelming feeling was that of isolation. I felt lost and scared and didn’t know what to do except be a good patient – take my tablets, make sure I was looking after myself, attending appointments. No-one understood what I was going through; they could see the fear in my eyes as I struggled to cope with everything that was being thrown at me, they looked after me, but I still felt empty. A part of me was struggling beyond the physical.
I found a moment of inspiration in my worst hospital admission. I wanted to write about this. Maybe I could help someone. Maybe I could help myself by freeing myself of these thoughts stuck in my head. I didn’t always have the time or the words – more like the courage and capacity! – to talk about what was worrying me. I vented my emotions directly onto my blog. I wrote honestly about how scared I was, about what I was going through, how I felt guilty and unsure. I let my words pour out and it let me let go.
Sharing my story has been an evolving thing. I found freedom in speaking my mind, getting my thoughts out; so that I could attack my days of recovery with positivity. If I got ‘rid’ of the negative, all that could be left was positive right?From there, my advocacy began.
So, why do I share?
Because by me showing that what I experience to others, they know they are not alone.
Because my truth can be someone else’s truth. For someone to be able to say “me too!” builds common ground.
Because it’s okay to not be okay.
Because experiences shared can help improve services and research.
Because patient experience is needed.
Why do I blog?
Because I find writing therapeutic and freeing.
Because words come easier on a screen than words in speech.
Because it’s like a document of my journey.
Because I can look back and see my past. I can reflect.
Do you share your story with IBD? What challenges have you faced by doing this?
NB. This post was originally published on the Comfizz blog here