The First Reaction.....

You can just imagine what it is like as a loved one of someone who receives dreadful news about a disease.  "Your loved one has cancer/MS/Parkinson's...", etc.   So, naturally that is how I felt when my wife was first told she had Gastroparesis.....well, you would be wrong.

The reason is simple - the word Gastroparesis meant nothing to me.  I doubt it meant anything to my wife at the time - when you see the word "Gastroparesis",  incapacitating disease is not the first word that comes to mind - to be exact, your mind may actually feel a sense of relief.  Your loved one has these horrible symptoms, there is now a name for it, so let's get it treated and move on with our lives. Surely, a disease we've never heard of can't be that bad, right?

Wrong.

The simplicity in the name of the disease is actually a part of the problem when it comes to understanding it, in my opinion.  It isn't named after a famous doctor, or the person who discovered it.    It doesn't have the feeling of dread that you get when you hear the word "cancer", which has become synonymous with deadly disease in society.     By the same token, all you have to do is break down the word to understand just how bad it is:  "Gastro" (has something to do with the digestive system) and "Paresis" (paralysis!)    If someone named the disease "Paralyzed Stomach", I am sure your instant reaction would be different.  Why?  Because the word "paralyze" in entrenched within us to mean "Something very bad".

"Paralyzed stomach" is only a part of the story.   Gastroparesis is a broad term that has to do with the delayed digestion of food.     Even the definition of the disease doesn't strike you as all that horrible, does it?    "You can still eat, darn it! It just takes longer for the food to get through!"

As I alluded to above, that was one of my first reactions - before I knew what this meant.  Before my wife knew exactly what this meant.  Before I started reading the blogs and the information available about this disease.  And, of course, before I started seeing first hand what it can actually do to somebody.

My intention here is not to ever compare Gastroparesis to anything else - all diseases are different and have different outcomes.     However, it is a bit frustrating - to everyone who deals with this disease - that it isn't treated with the same type of seriousness as other diseases are.    Trust me, you don't want this - and you don't want a loved one to get this.   The disease should have the same connotation as the diseases I mentioned above:  When you get the diagnosis, it should be instant dread.  It shouldn't be "Whew - Thank God it isn't something worse!"  There truly isn't much that is "something worse".....