By Clare Almand
23 Apr

Knowing When To Share

Monday, April 23, 2012

I find myself in a strange position. I have friends in New York who have known me for years and know all about my heart condition, but I don’t see them every day or even every week. I’ve actually spent the last two weeks in a sublet with two new roommates who don’t know about my heart. I’ve also been interning with a company for three months and they’ve seen my scar, too, but they don’t know any of the stories behind it either.

When I was younger, I used to talk about my heart and my scars all the time. For one thing, younger kids actually asked what my scar was from. But I also was just so proud and thought I was so cool that I wanted everyone to know. Now as adults, we are more conscious of people’s feelings and know it can be rude to ask someone about a scar, so no one does. But I also don’t want to be that person who just out of the blue talks about my medical condition.

Sometimes I think about what could possibly go wrong at work. I have this horrible nightmare that I’ll lift a heavy box and feel a pop pop pop in my chest as my ICD leads become disconnected from my heart. My heart rate will plummet into the twenties and I’ll be too weak and too scared of what will happen to just leave and get a cab to the hospital. I’ll have to tell someone at work to call 911 while I write down all my medications and surgeries in case I pass out before the ambulance arrives. And if the disconnected ICD doesn’t kill me, my embarrassment just might.

Yesterday, I almost told one of my roommates about my condition. I asked if there was a landline in the apartment (there isn’t). I need one to hook up my ICD-reading machine, which has not been hooked up in three months (I know, bad Clare). He told me no, but didn’t ask what for, so I didn’t elaborate. I realize that it would have been a perfect time to tell him and I missed my chance.

For the first time in my life, there is no one I see on a daily basis who knows about my congenital heart disease. I feel a little like I’m carrying around a big secret. So I’m open to suggestions about when to tell the roommates or my co-workers or if it’s even necessary that they know.

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