Starting from when I was very, very little, I've always had to answer questions about my disease: Why was I using an inhaler on the playground, or taking pills in the lunchroom, or coughing like a madwoman? You're constantly doing something odd when you have cystic fibrosis, so questions are inevitable.
I have learned to answer them proudly.
There is a noticeable reaction when someone finds out you have CF. They never expect it, since CF patients are an extremely attractive bunch. Some people process it right away and you can see that realization, which is usually a mix of surprise and sympathy. Other people need to see the pills, and the nebulizers, and the … you know … phlegm.
But when they get it, I love seeing the expression on their faces. Because other than shock -- and yes, sometimes pity -- there is something else. You see respect. They recognize your strength -- that inner grit that has allowed you to survive this far.
I call these exchanges “woah, CFers are tough cookies” moments (WCFATC). And these moments are proof that telling our CF story works.
Naturally, my urge to tell my story got me into advocating for the needs of the CF community. I love to stand up in front of doctors, students, philanthropists, and anyone else who's interested in my disease and tell my story. For people with CF, our story is the most powerful tool we have to stand up for ourselves and fight for what we need.
I've gone to Washington, D.C. several times with the Cystic Fibrosis Foundation to tell that story. I've told my story at a congressional briefing, a mock senate hearing (for the launch of the Senate CF Caucus!), and at the 2016 Teen Advocacy Day.
Every time I went, I witnessed a bunch of those WCFATC moments when I shared my experiences with members of Congress and their staff. It's empowering to talk to legislators. It's an incredible feeling to know they'll enter their next congressional debate on health care with your story in the back of their mind.
But, as an advocate, I can't always be in Washington, D.C., or at my state capital. And we can't wait until we meet with a legislator in person to make our voice heard.
This year, I won't be in Washington for March on the Hill, but that doesn't mean I can't help fight for the needs of people like me.
On March 15, I'll be joining many others from the CF community for our first March on the Hill Online Day of Action by giving my members of Congress a good old-fashioned phone call.
That's right, Washington; All the way from Connecticut, I can still bug you!
I’ll also be promoting our efforts on my social media accounts. Members of Congress watch social media closely to see what people are talking about, so tagging them in your posts is an easy way to make sure they hear you.
Advocating remotely is a phenomenal opportunity for everyone in the CF community and something that I’ve always been passionate about. And I hope everyone with CF and their families will join me in calling their members of Congress on March 15.
As more than 100 CF advocates converge on Capitol Hill that day, we can help amplify our message and make sure every office hears our voice and knows what we need. While members of Congress are talking face-to-face with people fighting for adequate and affordable CF care, we’ll be calling into their offices too. With our help, everyone on Capitol Hill will hear us that day.
Whether you call your member of Congress every day or have never done it before, now is the time to step up and join the 2018 March on the Hill Day of Action. Signing up is easy: You just need to click here, enter your information, and the Foundation’s advocacy team will send you more information as March on the Hill gets closer.
I’ve found that you still get those WCFATC moments when you tell someone about your experience with CF -- whether you’re a person with CF or one of their loved ones. So, make a call, snap a picture, take a video, or write your story, and share it with the people who make a difference.
Please join me and advocate in Washington from afar. Let’s share our story. Cheers to our first March on the Hill Online Day of Action!