A LETTER FROM OUR CREATOR
Hello and welcome to the Crohn’s and Colitis Collective!
Any time I tell someone that I have Crohn’s Disease, they are quick to share that their cousin, sister’s boyfriend, neighbour’s step-daughter, or uncle’s imaginary friend also has Crohn’s. It often seems like everyone I meet knows someone with either Crohn’s or Colitis. But for many years after being diagnosed I felt quite alone and could not find these elusive people! In addition, the avid reader in me was disappointed to find that there were very few books that contained first-person accounts of how others were dealing with the day-to-day realities of these illnesses.
In my experience, the conversations I have with my healthcare team largely center on the medical experience of my illness (i.e. symptoms, medications), which is important of course, but I often find myself wishing I also had a space where I could have discussions about the existential experience of living with this chronic illness.
Through my involvement with the Gutsy Walk in my community I have had the pleasure of speaking with people of all ages who live with Crohn’s or Colitis and I am always in awe of their stories and their strength. These conversations leave my heart feeling so full it could burst and I’m always left wanting more – more conversation, more connection, more community. So, I wanted to create a place and a community where we can share our multidimensional illness experiences and connect with peers. I have so many questions for this community, so many conversations I want to have, but I thought we could start with this photojournalism + narrative project and see where it takes us.
Some tips for navigating the site: on the ‘Patient Narratives’ page, you will find 5-8 stories featured, typically the most recent submissions can be found here. Every submission is also archived on the ‘Blog’ page so you can head over there to find all of the other submissions from your peers. If you submit your narrative form, it does not populate automatically so don’t worry if it does not appear on the site right away. I will get it live as soon as I can.
If you have any questions, comments or feedback, please don’t hesitate to reach out and send me an email at: firstname.lastname@example.org.
Wherever you are on your journey towards wellness, I hope that you can find some comfort in seeing the faces of, or reading the stories of, your peers in the Crohn’s and Colitis community.
With love and gratitude,
P.S. I would like to acknowledge that the creation of this web platform was made possible by two very special women, my grandmothers – Marg Mason and Jean Hamm.
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” – Mary Anne Radmacher