#GuestWriter – Louise from Young Crohn’s

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 judgment 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 fulfill 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 the 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 being 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 sharing my experience with others lets them 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.