How do you explain HCM to Strangers?

[mbcube]

Every so often someone notices my ID bracelet or a person in the group might ask how I’m doing. I notice I either say to little or too much.

I’ve often told my clients to come up with an “elevator pitch.” A 10-15 second “commercial” that explains what you can offer them. Sadly – I can’t seem to come up with one myself that explains HCM without frightening them!

So I ask my stiff hearted friends – How do you tell others about your condition?

[Reenie]

I usually say it's a heart condition and leave it at that unless they ask more. If they do, I say the heart muscle gets too thick, and that sometimes when you hear of athletes dying suddenly, it's often caused by this condition. I don't say that to scare people, just so they have a point of reference, they've probably heard of it before but didn't remember. I also usually go on to say my husband is doing very well but it's a condition we monitor regularly.

[gfox42]

That's about what I say too. The danger is that people's eyes start to glaze over if you give them too much information . . . if they want to know more, they'll ask a question.

Gordon

[Midge Rollins]

I agree with Gordon and Reenie. People usually ask because they are curious and really would not understand. I always said my heart walls were thick and could not pump right it usually satisfied most people. Get this I had someone ask me last week how much longer I will live. duh! If I had been quick I would have said I don't know how about you? Instead I did say 4 years longer than I would have.

[Largehearted]

Ditto the above, except I probably give too much info. What bugs me is when people say well why don't you just exercise more, as if that will fix the problem. So I usually try to explain SOB, chest pain and SCA. That usually satisfies people.

Leon

[Bucky]

Hi Folks:

I am almost to the point where I don't want to say anything as I am starting to bore myself even. I guess bore isn't the right word, but you know what I mean, I get tired of explaining a condition whereby we appear normal but have some serious difficulties to overcome that people cant' relate to. It's not that people don't care, but it would be easier from an explanation standpoint if there was an outward constant physical manifestation to point to....Now that's understandable. "SOB, Chest pain?" Hard to explain. "No, it's not a heart attack, a heart attack in some cases I might actually be happy with given a choice, this is different"

But I am not going to quit explaining.....low and behold when I was telling my neighbor a few months ago she told me that her nephew in South Carolina has HCM and he didn't know about the organization. So, I spread the word. I have this feeling that there are thousands more of us out there - many undiagnosed - that if we could get them to a Dr. for an utrasound and on a program, might have a chance to push back or negate the onset of symptoms...So maybe our role is as positively as possible, to spread the word and put a bug in somebody's ear that might just help them.

My sort form explanation to myself by the way is "This sucks bigtime" Not very descriptive of the condition, but certainly conveys my current state of mind.

bucky

[Eileen2345]

I say this -- plain and simple...


"I have the athlete's disease. -- You know, when they are playing sports and they just drop dead on the basketball court or the football field?
I was born with it and that's why I have a defibrillator/pacemaker, my brother dropped dead from it too."





Everyone understands it when I say it that way.

I know it's pretty abrupt, but that's the way it is.

[angall]

I have to agree with others. I would say that I had a heart disease that had to be monitored closey. If they asked quesitons, I would answer to a point that I thought they's understand and if they didn't they would ask more questions.

[ben's mom]

I pretty much tell everyone that my son has the heart condition you have heard about on the news - you know, the one when a kid dies unexpecatedly of cardiac arrest. Well we were lucky enough to get it diagnosed, monitor it and now live with it. No exercise does not help and can kill - no more hockey in our family.

[Isis1946@aol.com]

My Medic Alert bracelet is what gives me away and opens the question, but, I'm with Eileen on this. I tell them I have the "sudden death heart" that kills so many athletes, but I am monitored closely and my ICD prevents sudden death from VF.