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Knowing When To Share

Apr 23

Posted by: ACHA
4/23/2012 3:01 PM  RssIcon

By Clare Almand

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.

Clare Almand was born with Shone’s syndrome and has undergone a repair for coarctation of the aorta, multiple atrial septal defect and ventricular septal defect repairs, aortic valve replacement and an implantable cardioverter-defibrillator implantation. She has a B.A. in Media Arts and Design with a minor in Creative Writing from James Madison University. Clare pushes paper during the day and writes screenplays in her spare time. 

Tags: Clare Almand
Location: Blogs Parent Separator ACHA Blog

8 comment(s) so far...


Re: Knowing When To Share

Clare, please let others into your heart world! You don't have to wear a big sign on your chest, but do let key people in on you history. Roommates, yes. Manager or other boss, yes. IF something does happen, someone else can give some information. Just give them the basics. I have had my scar for 40 years!. Most people don't notice it, but it is a good conversation starter. "I don't know if you noticed my scar, but I was born with __ and do have an ICD that ___" If you are not quite ready to share make sure you have that critical information on you. I have a small silver heart charm medic alert bracelet. Friends have told me that they would never guess it was a medic alert, but paramedics know to look for one. Carry an information card in your wallet with your doctor, surgical and medicine information. Good luck Clare, I do understand.

By Joanie on   4/23/2012 3:33 PM

Re: Knowing When To Share

I would at least share it with my roommates. Just channel that kid in you when you used to talk about it more. There are plenty ways of bringing it up in conversation. Be very matter of fact about it. You may even say that it's something you would like them to or think they should know. Work is harder, because you may not want to viewed differently or not up to the task at work. I guess I would try to find at least one person that I could trust there and let them know. I work for myself, so it's not as much of an issue for me, but I won't hesitate to tell someone if I think I need to or if it helps them to understand my limitations, even if it's a client. It's probably a much bigger deal for us to sometimes tell someone than it is for them to hear it. My 2¢

By Bill Psolka on   4/23/2012 3:36 PM

Re: Knowing When To Share

Have you filled out a paper ACHA passport?

That's a good way to introduce it to people like roommates & those who are around you on a daily basis. It reassures them that if anything where to happen to you, all the information would be there for them, the doctors, etc. (It also gives those who you want to know all of the details something that you can go over with them to explain things.)

Personally, I'd tell the roommates everything. Not only for safety, but for emotional support. If something does happen or you have to go through further testing, etc. while you live with them, it will be nice if they already have the back story. Granted, I'm the kind of person who likes to become friends with their roommates, really know them well and have them know me well.

Keep a copy of your ACHA passport some where in the house where all the roommates see occasionally so they don't forget it's there, but it's hidden from guests - a laundry room, the inside of the front hall closet, in the bathroom cupboard, etc.

The co-workers are a bit of a different story. Find out what the procedure is if someone gets sick or injured on the job & make sure that the people in that chain of command have the information. In your case, it sounds like might also be good to make sure that the people you were physically close to regularly know & have access to a copy of your ACHA passport.

Give them the medically pertinent info for an emergency, but you don't need to go into lots of personalize-story details. It's probably best to keep it in terms of, "Just in case anything were to ever happen to me on the job, here are the numbers I want you to call & this is the information that it's important you give to the EMTs or doctors. I certainly don't expect that to happen, but my history is a bit complicated so I wanted to make sure we were all covered."

...Some employers ask you to fill out "in case of emergency" forms. If your employer is one of those just ask the HR people if you can add/staple some additional information on to that form in place of directly telling the people in the chain of command for medical emergencies.

By Gizzy on   4/23/2012 7:35 PM

Re: Knowing When To Share

Clare, having had different jobs and many new roommates myself I know it's hard to know how to tell people about your heart in a way that isn't awkward. With the roommates, hopefully there will be a night when you guys have more than just a usual hello/goodbye conversation and you will get to know each other a little better. That's sort of how I came to tell my roommates about my heart issues. I'm sure they'll be amazed at what you've gone through and it might put you at ease to know that they know what's going on in case anything does happen. I agree with the previous comments that you should make an ID card to carry around in case anything happens. With my roommates I ended up putting a copy of the card on the fridge and letting them know that it was there in case they needed to use it. Even if you didn't have heart issues I think it's a good idea for roommates to share their emergency info with each other anyway. You can ask them all to put up their info so that you won't feel singled out. Anything can happen to anyone. As far as work goes I know how awkward it can be to talk to your coworkers and boss about the heart stuff. You're definitely not required to tell anyone at work but like some said previously, it's probably a good idea to find someone at work you can trust to tell. In case something does happen at work, the last thing you'll want to be worrying about is listing all of your medical info. Anyway, hope that helps a little. I wish you luck with everything.

By Christine on   4/23/2012 7:35 PM

Re: Knowing When To Share

Definitely tell folks for safety, Clare. They at least need some info to troubleshoot what might be happening if something does. I used to try to get away with living like it wasn't there. I did field work and one day it came up and my co-worker was incredibly upset that he didn't know about it. He was partly upset because our job required a certain level of trust, but mostly for safety reasons. His point was valid- we worked in the middle of vacant lots and waded streams in isolated situations. Now whenever I work with someone new, I just give them a quick heads-up, and reassure them that I am tough as nails and they don't need to worry about it. I tell them I'm only telling them because someone got upset, once. I don't even tell the whole story (though it is an open if they want to ask), I just let them know I have an ICD and it will do all the work if I have a problem. In fact, I had a Red Cross training where the instructor said I was probably the safest person to be in the field with because of the pacemaker I had at the time. I'm not happy that I have to tell- I would rather not. But it is just another one of those stages we get to go through- to tell or not to tell. Think of it as a courtesy to the folks around you, and an insurance plan, just in case you need help some day.

By Amy on   4/24/2012 8:07 AM

Re: Knowing When To Share

More or less, whenever there's a lull in a conversation, or a silence that needs to be filled with anything, or when I'm getting to know someone and they're getting to know me, I ask something like, "Do you know what the number one killer of infants is?" They're usually taken aback, but it's a nice segue into letting them know I have a heart defect. "Well, the number one killer is heart disease, congenital heart defects to be exact. I have the most common defect, tetrology of fallot..." and tell them a bit about it and let them know enough so they know if something happens they can tell paramedics that I have a heart defect.
Right now with my pregnancy more questions come up, and I'm just an open book. "Why are you so concerned about....?" "Why do you have so many doctor visits?" "Why can't you...?" "Why are you breathing so hard...?" Whatever the question is, I answer it because it helps them not to freak out when something different comes along, and it helps them to know that if I start turning blue to call 911 immediately, puts me to ease too, knowing I have a safety net if I can't use the phone.

By Lela on   4/24/2012 8:08 AM

Re: Knowing When To Share

You need to share. EVERYONE I work with knows. I work in the ER as a nurse and all my co-workers and drs know. God forbid I pass out one day they need to know that my EKG is a little "funky" so that they don't do things to hurt me thinking they are helping. You don't have to tell everyone but it is good to let at least 1 person at work know and all the roomies need to know. Who knows who would be home if something bad were to happen. Hopefully nothing bad ever happens but its better to prepare them with potentially life saving info rather then keep them in the dark.

By Jen on   4/30/2012 12:50 PM

Re: Knowing When To Share

Thank you all for the many suggestions. My roommates are now in the loop and I've mentioned to a few people at work that I have a heart condition, but I haven't gone into detail. I really appreciate everyone taking the time to read and comment.

By Clare Almand on   5/7/2012 8:24 AM

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