A World of Funky Hearts
Tuesday, September 06, 2011
I am sitting in the airport in Los Angeles, on my way back from a wonderful trip visiting with HeartKids Australia, an organization that invited me to help kick off their planned expansion into adult-directed activities. I left highly impressed with both the HeartKids organization, which is well-funded and well-organized, and the ACHD care in Australia, which seems to be the same. One of the gifts of running ACHA is invitations to visit other countries and learn more about what living with CHD looks like in other places. Often I am reminded that each heart patient’s journey is as profoundly affected by their birthplace as by the shape of their funky heart.
One example happened three years ago, when I was lucky enough to be invited to Buenos Aires to meet with some adults interested in forming an ACHD group. Young, well educated, and in good health, they listened politely while I talked about patient education and ACHD care access, but quickly turned the conversation to job discrimination. When I explained that most of our members do not disclose their condition to their employers, they all asked, “But what about the scar?” Confused, I noted that most people just wore something that covered it up. “But what about the exam?”
It was then that I found out that in Argentina, a complete physical by the company physician was the standard final hurdle to getting any job. With no laws against health discrimination, most adults with CHD, even those with excellent skills and well-repaired hearts, were unable to find work. Suddenly it was clear why they were less than transfixed by my talk about brochures and websites. “Wow,” I said, “I guess if I were you guys, that would be my first priority—working on making heath discrimination illegal.” Suddenly their challenges looked very large indeed, and ACHA’s challenges looked like very small potatoes.
Two years ago, it was my turn to put someone else’s troubles in perspective when I was invited to meet with a group of European ACHD groups meeting in Toronto. The U.K. group was talking about their campaign to get CHD included on the list of exempted conditions that would not have to pay any cost for prescription drugs. At that time, ACHD patients in the U.K. had to spend one hundred pounds a year (roughly $150) before all their drugs became free. Several other groups chimed in about similar campaigns, and the proposal was made that we endorse free drugs as a right for all ACHD patients.
I just had to speak up. “You know, in the U.S., pretty much no one has free drugs. I have excellent health insurance coverage, and I spend about $100 a month on my cardiac meds.” There was an appalled silence. I went on to explain that ACHA does campaign for improved health insurance coverage for ACHDers, and we were trying to make things easier for our members, but entirely free drugs was just not a realistic U.S. goal.
But if these moments make clear the differences in our journeys, other moments make clear what we share. Get together any group of ACHD patients, in any country, and pretty soon the talk will turn to the dangers of the ER visit. Whether in Australia or Rome, we joke about tattooing our defect on our chest, and trade stories about doctors who ask, “And how long have you had your congenital heart condition?”
This will often segue into smart-aleck answers to scar questions: My favorite U.S. answer (“shark attack”) has now been joined by “boob job gone wrong” (Switzerland), “I have a scar?!" (U.K.), and “I just scratched a little pimple, and this happened” (Belgium). Wherever I travel, I almost always find a common sense of humor—ACHD patients love to share a laugh, turning often painful experiences into funny stories and wry observations. What a gift it is to be able to hear these stories, and spend time learning about the many ways there are to be in the world with a funky heart.
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