Defect or Disease?

Do you have a Congenital Heart Defect, or Congenital Heart Disease?

Most people I know use the two phrases interchangeably – even my hero, Dr. Helen Taussig. She preferred to use the phrase Congenital malformations but even she fell into the Heart Disease/Heart Defect trap occasionally.

On paper it is an easy choice: a defect is a design flaw, while a disease is an illness. My heart has several design flaws (a missing valve, holes in the wall) so obviously, I have a heart defect. But my heart defect causes several heart diseases – if my heart wasn’t defective, I wouldn’t have to worry about Congestive Heart Failure, Cyanosis, or Atrial Flutter. So really, both terms fit the situation.

I may say “Congenital Heart Disease” but others only hear “Heart Disease.” That’s not so bad, since it is usually applied to the health problems that affect the heart as you age. Even though there is a misunderstanding, at least the discussion involves the heart. I can use that as a starting point. But the phrase “Heart Disease” is becoming a code for “unhealthy living.”

Heart Disease? Son, you need to step away from the cheeseburger. After all, if you didn’t open wide and literally shovel the food down your throat, you wouldn’t be having these problems. And don’t give me that look, no one held a gun to your head and forced you to have that second helping!

I have been sitting in the Cardiologist’s waiting room and been asked “So what are you in for?” (In the same tone of voice used to ask Prisoner #6298965 what he is in for!) When I replied that I had a heart defect, I was told in no uncertain terms that I should have been more careful! Her husband had the exact same problem and she had thrown the salt shaker away, cut out the cholesterol, and didn’t fry any foods at all! Knowing better than to argue, I nodded and just kept saying “Yes, Ma’m… Yes Ma’m!” I also wondered if her poor husband actually enjoyed eating cardboard boxes at every meal.

It seems to be a grim comment on our society that it is assumed if you have an illness, you’re automatically at fault. When I volunteered at the museum, my boss was participating in a county fair parade when he suffered a heart attack and fell off of his horse. During his recovery period we occasionally heard comments about how he was going to have to lose weight, watch what he ate, and other advice. These people didn’t know that he usually tipped the scales at 165!

This “It’s your own fault!” attitude has also led to almost making “obesity” a crime. The problem is, today’s definition of an “obese” person would have been quite acceptable in the past. Look at any of the paintings by the great masters: since most of the subjects were at least partially nude, it is easy to tell that they carry a few extra pounds. But what was recognized as healthy and attractive back then is seen as repulsive today.

And it is not because we have gotten smarter or more health conscious or “nutritionally aware.” The Body Mass Index (BMI) charts were accurate in the 1950’s… but humanity has grown taller and heavier, distorting the results. According to a BMI chart, all of the members of the 1996 USA Women’s Curling Team is obese. Actor Tom Cruise – all 5 foot 7 inches, 160 pounds of him – is considered just barely “overweight”. (A BMI of 25 is considered overweight, Cruise’s BMI is 25.1)

Young people today, especially young ladies, are held to an impossibly high standard. Anything less than perfection is unacceptable, and open to ridicule.

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2 Responses to “Defect or Disease?”

  1. Laurel Nelson Says:

    I absolutely and totally agree with you on all counts. It is ridiculous that the only heart issues people think of is heart disease, which yes, is brought on by unhealthy choices. It was such a problem in the recent health care debate, that everyone who was against it only used as examples those health problems that are brought on by choices. People need to remember that you, and all of the other heart patients out there did not CHOOSE to have your defects, and no amount of healthy living is going to make you any better. You may be healthier, but your heart will still be defective.

  2. Wendy Says:

    This is exactly why I prefer the phrase that my friend Heather coined “wonky heart”. I have struggled using the word “defect” in reference to my child and I find if I tell someone unfamiliar with the heart world that he has a “wonky heart” or some “wonky parts” in there, they will then allow me to explain and there is no lecture about being “careful” and there is less of a look of “pity” that the word defect seems to conjure up in some. OR I use the full term “congenital heart defects” and point out it means he was born with it. Although I have been asked “what happened” during my pregnancy to cause it.
    I have a feeling we’ll struggle with the reactions to the name until there is more wide spread knowledge and awareness out there.

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