Adventures with Gastroparesis

Gastroparesis throws your entire life a curve ball.  EVERYTHING changes:  your diet, your sleeping patterns, your morning routine, your social life, your professional life, your level of physical activity, you name it.  I have scoured my brain and can not think of one aspect of life that does not change once Gastroparesis begins to take over.  As much as you try to continue being “normal”, it isn’t going to happen.  You are kicked right out of the fast lane onto a beaten up wooded path that not many people know about or care to find.  You have to learn how to navigate this path and hope that you can find your purpose life.  The purpose that you are meant to pursue while living through the ups and downs of Gastroparesis.  While on this path, there are many times that you feel like the image below.  You are unrolling the path by yourself and have no idea where it is going.

Perhaps one of the most frustrating comments that could be made to someone with Gastroparesis (or someone with any chronic illness) is the following:  I’m not sick but my life is busy too.  There are many reasons that this type of comment is frustrating.  The first is the insinuation that sick life is busy life.  Yes, it is busy running to and from doctors’ appointments (yes, plural doctors).  Appointments that tell you the same thing every time: there isn’t anything we can do for you.  (This is if you are lucky enough to have a doctor correctly diagnose you, which could take years.  More on this in future blogs.)  Yes, you are busy cancelling plans with friends and family so that you can vomit for hours or lay in bed with severe stomach cramping.  Yes, you are busy hanging out with the GP Elves while you stare at a wall because your brain has stopped functioning.  I guess this is busy and could be equated to the someone who is busy in the fast lane continuing on the path they set out for.

Another reason why this type of a comment is frustrating is that somehow this is a equal comparison.  Somehow choosing to live a busy life is equal to being dealt an incurable disease which is not understood and has extremely limited treatment options.  That somehow being busy with work events and social outings is comparable to giving the majority of that up to go to doctors’ appointments, explore alternative healing methods, or to be incapacitated.  I did not choose to have Gastroparesis.  In fact, doctors do not know what causes Gastroparesis for most of us.  This is called Idiopathic Gastroparesis, which is what I have.  I did not choose this life, but am making the most of it.  However, the people that make these types of comments choose to have a busy life.  There really is no comparison.

The last reason that I will discuss about why this comment is frustrating, is that once the frustration level settles down you realize that the people saying these types of things just don’t get it.  They don’t understand that your life has had an upheaval on a massive scale and that no part of your life has gone untouched.  They don’t understand that a basic function of life, eating, just doesn’t happen for you without significant planning.  They don’t understand that you are trying anything to barely stay afloat.  They don’t understand that you are trying anything for just a few hours of feeling better.  They don’t understand that you have to focus the majority of your time on how to minimize being sick.  They don’t understand just how often you are sick.  They don’t understand that you can’t shower because it will use up all of your energy needed for the day.  They don’t understand that you aren’t “busy” because you choose to be, but scrambling like a rat in a cage trying to break free.  Even if you can break free for only an hour, it will be the best hour of your life.

~Millie