I had the great honor of traveling to Washington, D.C. to be part of Congenital Heart Advocacy Day last week. Besides being a wildly exciting adventure that I’m sure to never forget, it was also an experience that brought about great personal growth for me.
I had no idea what to expect. I’m not particularly politically minded, but knew that having a voice in D.C. was important towards our CHD advocacy.
There seemed to be this focus on what Amy Basken, ACHA’s Public Policy Manager, called the “30-second elevator speech.” Basically, you have to boil down your CHD story to 30 seconds or less, and include what you need people to know or do for you. Don’t get lost in the details—what type of defect, how many surgeries, blah blah blah. Only CHDers really care about that, and frankly I can’t keep all my friends’ defects straight anymore!
I think like most CHDers, I’ve always struggled with how to tell people about my heart disease. I’ve always been nervous about coming across as a victim, or I’m afraid of scaring people away or sounding needy. How do you sum up a lifelong CHD story into 30 seconds? What do you really want them to know?
Advocacy day is a crash course in learning how to tell your story and getting people to care quickly—REALLY QUICKLY.
It’s also about seizing the moment—finding yourself in an elevator with an influential person and taking the chance to tell him or her about yourself. Being open, honest, and giving it your all when there is nothing to lose, besides doing nothing.
Amy had buttons for us that said “Ask Me About My CHD,” and at the beginning of training I pinned it to my name badge without thinking about it. I wore my badge often and I was completely surprised by how many people actually did ask me about my CHD. From the lady at the front desk at the hotel, to people in the super long security lines, I was asked about my CHD. Even when I wasn’t wearing the button, I found myself telling my story all over D.C. and beyond—to the people I sat next to on the airplanes and the taxi drivers inquiring the reason behind my visit.
They all wanted to know, and they all were truly interested.
I had an awesome group for advocacy day with an amazing balance of personal CHD stories. There were six of us from California, and together we visited nine legislators’ offices in one day. Together or in pairs we told our stories:
- The adult CHDer in his 50s who was born with a “simple” CHD that turned out to be not so simple after all.
- The mom of the 5-year-old with CHD who feels the weight of her son’s uncertain future.
- The best friend and supporter extraordinaire of an adult CHDer who feels a calling to advocate.
- The adult CHDer in her 40s whose doctors don’t know how to care for her because of a HUGE deficit in CHD research—all she wants is to prevent this uncertainty for the generations behind her.
- The mom of an adult CHDer who pours her heart and soul into advocating for CHD.
- And myself, the adult CHDer in her 30s who was lost to appropriate cardiology care after she turned 18, only to find it while she was pregnant with her son, and only once the damage to her heart caused by the pregnancy had been done.
We all have a story.
It seems that all too often we categorize ourselves within the CHD community—heart mom, adult CHDer, child with CHD, baby loss moms, those diagnosed at birth vs. those diagnosed later in life, simple vs. complex defects, the list goes on and on.
WE ALL HAVE A STORY.
Together WE are CHD.
Together WE have a voice.
What is your 30-second elevator story? How can you share your story to help raise our collective voice?
Add yours below.
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