I was diagnosed with Crohn's when I was 15. Thats more time alive that I've been living with Crohn's than not! I am now almost 35! EEEK!
My first support group I went to put me off for life. I was young and was about to have surgery and everyone was old and miserable and I just didn't feel like anyone got my story, or that they'd lived my life.
I wasn't looking for negative stories, I was looking for positive empowering stories that showed people still living life to the fullest!
Now, luckily we have facebook and amazing websites like this where people can connect and find a common friend.
As I've gotten older I've been very lucky to encounter some amazing and inspirational Spoonie Friends!
My first spoonie friend I didnt get to meet until 3 years post-op. I met her when somehow I'd stumbled on a fashion show being held in London while I was living there. It was for a charity called Ostomy Lifestyle and they were holding a fashion show to promote ostomies. I became involved and was able to do some modeling for the night!
That night I met my first ever ostomy spoonie friend. Lisa was basically my older twin. She was just like me and we clicked immediately. She taught me all about wearing sexy lacey granny panties and supporting my ostomy with them instead of tucking it into my knickers and then needing to wear a singlet to stop it from puffing up the top.
Lisa had lived my life. Her life was completely different to mine but the essence of our stories were the same. We understood the trauma and chaos that having a spoonie life can bring. We both had stories to share and lessons to gain.
For years I'd avoided social media and seeking out others who had a bowel disease or ostomy. Sometimes there can be so much negativity out there it can seem so consuming and life was consuming enough for me.
Over the last 2 years I've embraced the spoonie connections through social media but the rivalry can be rife! But when you meet your spoonie kindred person, there is just no one else like it.
I've recently found some amazing new spoonie friends and talking with them - it's like no other. The spoonie friend gets why you can't always make it or why you always look tired and they don't say anything when you are constantly complaining about how exhausting it all can be - because they get it.
You don't have to hide in the shadows with a spoonie friend. But to find one, you will need to come out of the shadows.
I hope to see you out there with me xxx
Which aspect of awareness week are you most excited about?