by Jessica Grossman
(from Ostomy Canada Magazine – Summer 2013: Volume 21, Number 1)
My story is a story synonymous with all stories told of those who have dealt with diseases and have overcome them. Just like the protagonists of those stories, I too was busy living a normal life full of great people and fulfilling experiences until I was forced into battle against a sickness. After much pain and suffering, I won the battle: a battle that left me with a large battle scar. While many have taken a similar scar and hidden it in shame, I knew I had no choice but to wear it proudly as a symbol of my victory. I am Jessica Grossman, the founder and spokesperson for Uncover Ostomy, and I wear my ostomy with pride.
Uncover Ostomy (UO) is an online awareness campaign that was created to defeat the negative stigma surrounding an ostomy. Launched in October 2009, the campaign has become the largest and fastest growing ostomy campaign to date. Using only online touchpoints through a website, blog, and Facebook page, UO has been able to spread ostomy awareness completely through conversation and sharing. The campaign has also grown organically into a support group for the vast number of people ready and willing to share their ostomy story and give advice to others.
Spreading ostomy awareness has been a large part of my life since I became an ileostomate as a child. I was diagnosed with Crohn’s disease at nine years old and remained relatively stable until I came down with a terrible stomach bug at the age of eleven that triggered a massive flare up of the disease and forced me to take residence at Toronto’s Sick Kids hospital. After two years of pain, malnutrition, torturous tests, and isolation, I was told that I had a decision to make: ostomy or death. At thirteen years old, the decision seemed obvious. The ostomy was my lifesaver and I was grateful for it.
The gratitude I had for my ostomy was evident in the positive attitude that I shared with everyone; and when I say everyone, I mean everyone. From the moment I returned to my eighth grade class after my extended absence I began to talk about my ostomy without a second thought. There had never been a question in my mind as to whether or not I should share it. I was alive because of the ostomy and I wanted everyone to know.
This open and positive attitude followed me into high school as I embarked on not only a new education, but a new social circle. I did not know a single kid at this school. Though I knew I was faced with the task of making an entirely new group of friends, I also knew hiding my ostomy was not the way to do it. I knew that if I wanted to make new friends, these friends should know exactly who I was. By the end of my high school career I had not only made some amazing friends who were aware of my story, but I had also taught most of the students at the school what an ostomy was.
University was much like high school for me, yet on a larger scale. I was once again in a situation where I needed to make a new circle of friends and I decided to continue to share my story. It never even dawned on me that talking about my ostomy at a sorority recruitment event might not have been the best way to make an impression. Bodily functions are not often a topic of conversation that usually comes up in a group of 60 classy women, yet I still opened up. If they wanted me to be a sorority sister, they would have to accept me. Needless to say, in my final year of university, I became president of that sorority.
I’ve been extremely fortunate in the nine years that I’ve had my ostomy to be able to say that I’ve never experienced negativity, rudeness, or rejection because of it. I have never been refused friendship, have never been treated with disrespect, and I have never been shunned from belonging or contributing to a group of people. While some may say I have been lucky, I respectfully disagree.
It may have been luck that helped me overcome my disease, and it may have been luck that kept me healthy after surgery, but luck was not what contributed to the life I led after my ostomy. I was able to, and still do lead a happy and full life because I accepted my ostomy right from the start. I was never sad or ashamed of what I had, but I was confident and open about who I was. I not only spoke of my difference, but I did so with such positivity that all who I told could not help but see the ostomy as I had; a lifesaver.
Uncover Ostomy was a campaign created to spread my attitude to others with ostomies. I created it to show others with ostomies that having an open and positive attitude towards the surgery can be a wonderful thing. Not only does being open and positive teach the public about the ostomy, but it also helps break the negative stigma surrounding it. The more of us- the ones with the bags- who come forward and talk about it, the more the world knows about it and understands that ostomies are not something to be ashamed or upset about, but something to be proud of.
Wear your battle scar with pride.
“Wear Your Battle Scar with Pride” first appeared in the Summer 2013 edition of Ostomy Canada. You can become a subscriber to our glossy, full-colour publication of Ostomy Canada magazine by becoming a member or supporter of Ostomy Canada Society. Find out more here.