By Christy Sillman
23 Jan

The Heart of Community

Wednesday, January 23, 2013

I love this time of the year. New beginnings, making yearly plans, annual vacation requests, and best of all, heart week.

I’m new to celebrating CHD awareness week; in fact, I’m new to the CHD community in general. Just three years ago I discovered ACHA. Prior to this discovery I had one friend with CHD – one!

Today, I just counted that I have more than 50 CHD friends on Facebook, more than 10 of which I’ve spent time with in person. I belong to five CHD-related Facebook groups. I co-coordinate a pilot Mended Little Hearts Adult Survivors CHD support group here in Sacramento. I also follow and comment on ACHD message board threads, and, yes, I blog for ACHA. What a difference a few years makes.

I have a community. I have support.

Having a “silent disease” such as CHD can be really lonely. Not many people understand the unique experience we have with an intermittent chronic disease. Good days, bad days, many tests, many doctors, and always anticipating the next step that might include major open heart surgery.

Many doctors don’t even understand the needs of an adult with congenital heart disease. Labels such as “fixed” haunt our plight. Nothing feels scarier than when you know more than the medical professionals caring for you.

We all have stories of “near misses” – such as recently when the advice nurse said, “You know what’s funny? They still have tetralogy of Fallot listed in your health problems. I’ll go ahead and delete that for you since you’re fixed.” Uhhhm, excuse me? I took the high road and found the composure to educate this woman in a kind way. Thank goodness it was a phone conversation because there’s no way I kept a straight face.

Finding my people – the CHD community – has changed my life. I have found a purpose, however small, and a cause to fight for. I have friends who understand me better than most.

Hearts flutter along the aisle in the drug stores. Pink, red, and purple don the greeting cards. I know that Valentine’s Day swag is intended for the romantics and desperate lonely consumers, but this year, more than any other year, I feel as though they have extra special meaning for me. This is OUR time of the year.

This is our time to raise awareness, to wear our hearts loudly, and to make our collective voices heard.

I have BIG plans this year – developing the aforementioned adult CHD support group with Mended Little Hearts, assisting with the first-ever Sacramento CHD walk, blogging for ACHA, and hopefully (fingers crossed) traveling to Washington, D.C. to advocate with ACHA.

I want to thank you, all of you, who have welcomed me into the community. You’re more than I ever could have wished for. I stand proudly with you as we work to make our voices heard.

Let’s make this our best year yet!

Let’s find the others who are as lonely, scared, and misguided as I was three years ago.

Let’s let people know who we are and what we need.

Let’s raise our voices together!

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Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.