I was in hospital, the second time since my diagnosis – roughly November 2011 – and my mom handed me the local paper. Inside was an advert from a local woman who wanted to form a local support group for people with Crohns Disease and Ulcerrative Colitis. She had Colitis and was looking for fellow patients to gather some interest to go back to Crohns and Coltitis UK with. I immediately emailed her and we started chatting about our stories, agreed to meet once I was well and out of hospital to sort out moving forward. We formed our own group about four months later after several meetings with the Head Office of CCUK; the Crohns and Colitis South Staffordshire group was born. I am still involved; I recently stepped down as Group Coordinator but sit on the Organsing Team.
I sort of fell into that, it’s been a great experience and opportunity.
My blogging I started almost immediately once I was diangosed. I came home after that first admission on getting the news and just started writing. I kept it private and secretive at the beginning, then put it online once I started Humira in the December of 2011. I documented all that I could, tried to share as much as I was willing and able to do, trying to be honest and realistic about a) what it was like having Crohn’s Disease, b) what it was like having an invisible illness and c) how hard it was to try and live a ‘normal’ life with them. It’s always wonderful to receive comments and start conversations with other patients in similar situations, who have experienced the same as me and have great advice for me. It was a good way to vent my feelings when it came to receiving counselling for when I struggled emotionally to deal with my disease, when I had a lot of difficulty accepting my present and not being able of let go of my past. That is tough to relive when I go through and refresh posts and content. I try and keep most of it, as it is raw and honest and it happened, I am not going to hide how I felt. It keeps me present.
I enjoy being an advocate. I believe that my experiences are valid in helping others. I have had lots of tests, problems, medications, symptoms that not everyone else with Crohns experiences. My disease is different too and my journey reflects that. I share that because someone, somewhere could see it and take comfort in knowing they are not alone. That they aren’t imagining it and it can be sorted.
Was it a hard decision to become an advocate? No. It came naturally.
Is it hard being an advocate? Sometimes, but only when my health stops me from advocating. Ironic isn’t it, my advocacy is sometimes halted by the thing I am advocating for…!