The Unseen

Sitting in my Cardiologist’s waiting room today, I tried to guess how many of us were Adult Congenital Heart Defect patients. It’s not easy – four different offices use the same large waiting room. Cardiology, Gastroenterology/Hepatology,  and a third office share the same waiting room. The third office is tucked into the far corner, I’m not sure what specialty it is. Also, to reach the Pacemaker Clinic, you have to walk through the Cardiology department.

So who’s who? I know there is one Adult Congenital here – me. That guy looks like he’s in his 20’s, but he’s sitting closer to the Gastro office. How about that guy? No, he’s with his dad, who apparently doesn’t hear very well.

That’s the thing about us Heart Warriors – you don’t know when you are looking right at us. An observant person can pick up the signs pretty quick, or sometimes it’s just a snippet of an overheard conversation. For example, I never knew the woman sitting next to me was also a Heart Warrior until she said “So you’re a patient of Dr. Book…. ever heard of the ACHA?” And that day if Dr. Book had entered the office through the rear doors instead of through the waiting room, I’d have never joined the ACHA, the Adult Congenital Heart Association.

The ACHA’s core mission is to “improve the quality of life and extend the lives of congenital heart defect survivors.” It also provides us, through our online message board and our gatherings, the chance to sit down and talk with other survivors: The people who know what we have been through. Their stories may not read exactly as ours does, but they’ve walked the same road. Their experiences could be your guide through a difficult situation; just as you could help someone else out. But because our disability is hidden, sometimes we feel invisible. Or we feel so different it’s like we’re from another planet.

Are you an adult with a Congenital Heart Defect? If so, I invite you to join the ACHA. Membership is free, and the friendships are priceless. And there is always someone on your side.

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