We just finished another successful Crohn’s & Colitis Awareness Week. I had the pleasure of joining amazing patients in Washington, DC to share my story of living with Crohn’s disease. I met with health aids responsible for working with members of Congress to protect the rights of patients and ensure adequate funding is set aside for IBD research. My eyes were opened to this wide world of IBD patient advocacy. I realized my journey as an IBD advocate began many years ago; I also realized becoming an advocate is as simple as sharing your story to benefit as many patients as possible.
As a child diagnosed at age seven, I’ve had many years to come to terms with my disease. However, many of those years were spent keeping my disease fairly close to my chest. It’s not that I hid my disease – those close to me were familiar with my health issues. But it was my disease to deal with. I didn’t want to burden others with the barrage of symptoms, the bad days, the doctor visits.
The turning point
It wasn’t until I became sick in 2006 that I became more vocal. I was so sick that I couldn’t hide the severity of symptoms from my friends, my classmates, my professors, even complete strangers. Twenty years old and I completely relied on a walker, suffered from severe skin issues, eye issues, joint pain. My personal relationships were strained because I needed a caregiver. My grades were plummeting because I couldn’t attend class (which is a huge issue when you’re studying for your master’s degree).
I had to speak up. I had to explain that my life was being controlled by Crohn’s – I had doctor’s to visit, medications to pick up, physical therapy sessions to attend. No one was going to understand until I made it clear that I have special circumstances. After this, I refused to hide my disease.
I found being upfront about my disease made issues easier to deal with if they popped up (which they usually do). I was vocal about my disease at my first job after graduate school (not during the interview, for obvious reasons) and I found that most people wanted to know more, wanted to know how they can support me. People would send information just in case I wasn’t aware or ask me how I’m feeling “these days.” These simple gestures spoke more to me than anything.
It’s about millions of patients
I started hearing more stories, demonstrating how widespread IBD really is. “Oh, my aunt has UC” or “I have a friend with Crohn’s” became more and more common. I would share my own story and the responses I received were incredible. All of a sudden, I was helping people understand how they can support their family members or their friends.
At the same time, I joined Team Challenge and became more involved with CCFA. All of a sudden I was surrounded by dozens of incredible people just like me but many weren’t comfortable sharing their story. They were recently diagnosed, new to this IBD world, or they had experienced injustices, causing them to close this aspect of their lives to others.
I can be their voice.
It hit me like a bolt of lighting. Even if I can’t directly help them achieve remission, I can help them come to terms with their disease. I can be their voice. I can offer support, provide advice, share a hug, lend a hand. I can educate myself about patient rights. I can learn what research efforts are underway and how funding is determined. I can call my Congress representatives and have a voice for all patients living in Colorado. I can put my name on those petitions to create more transparency within insurance companies.
If my time in Washington taught me anything, it’s that our elected officials are there to represent the people they serve. And I am one of those people and I can help represent the thousands of others just like me. Since coming home from our day of advocacy, I connected personally with my representative and my two senators. I am engaging in the conversations happening on their social media profiles. I am becoming a squeaky wheel and when we have enough squeaky wheels, we’re going to be incredible difficult to ignore.
Now is the time. All you have to do to get started is raise your voice. Eventually the paths to larger support will make themselves evident if you just keep your eyes and ears open.