What does it mean to be an advocate? To me it’s doing everything in your power to speak up, step up and help raise awareness for a cause that’s near and dear to your heart. It’s about having a voice for those who may shy away from the spotlight. It’s standing up for what you believe in and offering hope to others who can’t fathom what it’s like to walk a day in your shoes.
Crohn’s and Colitis Awareness Week was created in 2011 by U.S. Senate Resolution 199, which expresses appreciation to family members, caregivers, health care professionals, researchers, and Crohn’s and ulcerative colitis patients. Each year the Crohn’s and Colitis Foundation of America (CCFA) dedicates this time to truly focus on spreading awareness and highlighting what it’s like for the millions of people who may look healthy on the outside, but are suffering and experiencing pain on the inside. This year’s theme is #IBDvisible.
As CCFA puts it, “The toll IBD takes on the entire patient lies hidden underneath, significantly reducing public understanding of what IBD is and how it affects quality of life. Patients and caretakers can change this by getting involved and sharing stories…giving a face to these diseases.”
Since my diagnosis in July 2005, I’ve encountered countless people who have no idea what Crohn’s is…I find myself repeatedly giving my elevator pitch that I feel like I can recite in my sleep. It doesn’t bother me, but it makes you stop and think for a second that the majority of people really don’t understand what it is, how it makes people feel, and the severity of it. It’s not just random stomachaches and constant bathroom breaks. It’s so much more. Even when you’re in a remission state not a day (or sometimes even an hour passes) that it doesn’t cross your mind, despite being out of the hospital you are constantly on medications with systemic side effects. The thoughts and worries lurk within you from the day you are diagnosed. The internal dialogue can be maddening at times… “When I eat this how will it make me feel? What if I get sick today? Is this stomachache a sign of something that’s brewing? When will my next flare up be…will it interrupt big plans I have coming up?”… the list goes on.
For those who are not patients—I oftentimes get the feeling that many think we’re just being worry warts or that we’re acting like it’s a bigger deal than it is and that we’re healthy and have nothing to worry about. Having Crohn’s and talking about it is not a way to get attention, it’s our way of verbally trying to explain to you what we’re going through so we don’t feel so isolated and alone in our fight. As I sit here writing this article… my stomach is hurting. I don’t know if it’s because I just ate lunch or if something is going on with my pregnancy.
While there are many health conditions that are of course more serious or life threatening, Crohn’s and ulcerative colitis are not a walk in the park. The issues in our intestines and colons translate to issues with nutrition, bone strength, joint pain, etc. The mental anguish the disease can cause leads many to a depressive state.
Through the years I’ve found it empowering to get to know members and employees of CCFA who all have the same goal and mission in mind. One of those people is Tovah Domenick.
“Crohn’s disease and ulcerative colitis affects so many people, including several of my loved ones, and CCFA is working hard to not only provide support for patients but also to find better treatments and ultimately a cure. As an employee of CCFA it’s hearing individual patients’ stories and how they have overcome their challenges that makes me passionate about the cause. CCFA’s website is our greatest resource and is full of information for patients, supporters, and caretakers. We offer online support group, an IBD Help Center, links to find local support and programming, tools & trackers to help manage your IBD, information on current research projects, and much, much more,” said Tovah Domenick, Take Steps National Manager, CCFA.
If I could ask one thing of you—it would be to educate yourself and show compassion. Don’t question a loved one, friend or coworker or try and compare Crohn’s or ulcerative colitis to anything. Instead, listen. Listen with an open heart and the understanding that this person in your life is up against a battle that they will likely face for the rest of their days. Researchers are working towards a cure, but in my heart of hearts I truly don’t know if that cure is going to happen in my lifetime. I try not to focus on a cure, but rather have hope…and be thankful there are awareness weeks like this that give these diseases the attention they so deserve.
I am celebrating this year because I’ve gone 15 months without a hospitalization and I’ve been blessed with a smooth pregnancy thus far.
I am celebrating this year because this blog allows me to speak out for others who may be ashamed or feel alone.
Most of all, I am celebrating Crohn’s and Colitis Awareness Week with the hopes of reaching those who have never heard of Crohn’s or ulcerative colitis before, and give them the tools and understanding of how to be an IBD advocate themselves. Even if you don’t have either disease, you can be a part of this effort.
Start the conversation with friends and family. Talk to your state legislators. Raise money to help fund research and find a cure. Wear purple to support a friend or family member the week of Dec. 1-7. Share a post on social.
To learn more about how you can make a difference check out: http://www.ccfa.org/AwarenessWeek/.