I Spent Years Isolated and Feeling Ashamed because of Crohn’s Disease
I spent many years with Crohn’s disease feeling isolated and ashamed.
When I was on steroids and experiencing side-effects that made me feel ugly,
I was alone.
When I lost my job, had to quit school, and moved back home,
I did it by myself.
When I was a teenage girl dealing with puberty and chronic illness,
I thought I was the only one.
When I was having accidents,
I isolated myself.
When I had J-pouch surgery,
I didn’t know anyone who could relate.
Then I Found Camp Oasis
In 2009 I decided to become a camp counselor at Camp Oasis; a summer camp for children and teens living with Crohn’s disease and ulcerative colitis. It was the first time I met others with IBD and the feeling it gave me to be in their company and to talk about IBD is a feeling I have difficulty describing. It was like years of carrying that weight all by myself was lifted off my shoulders. It was like wanting to laugh and cry at the same time (and I did). I spent the week there in charge of a cabin of 16 year old girls who needed me and they needed to hear what I had been through so that they wouldn’t feel alone. I had to talk! I had to provide them with a good example of what living life with IBD looks like. I left after my first summer at camp feeling like a new person.
I Did Have A Voice, and It Was Loud!
When I left camp that first year I discovered that I had changed significantly in how I felt about my Crohn’s disease and how I took care of it. I also realized just how important it is to talk to and connect with other patients. I found my voice, and it was loud! Two years after that I created Inflamed & Untamed in order to be a voice for others constantly and not just during one week out of each year. I hoped that through my words and experiences that you could see a little piece of yourself in me and feel comforted that you are not alone. I know what it feels like to not be able to talk about this and so it is my hope that I can talk for someone and that it might help.
IBD is a disease that can make you feel embarrassed and ashamed and so we walk around keeping secrets. We work hard to hide our symptoms and what we are going through and it gets overwhelming living so burdened by your health and doing it alone. We isolate ourselves and soon the world you used to live in is just something you watch going on around you from the sidelines. Please find support. I wish I had never let myself live with this burden alone for so long.
Sara
