Is There a Doctor in the House?

Most people with Gastroparesis probably have the same exact frustrations when it comes to finding the right doctor to help treat their condition.    Many doctors have no idea what the disease is, how to treat it, or how to empathize who those who have it.  This isn't necessarily their fault.       There are many outstanding GPs out there who have never heard of this.  Some may even think of it as a disease they will never encounter within their practice.  This actually makes sense - by the time a patient is diagnosed, they are already under the care of a specialist.

However, there are even specialists who don't have a strong handle on this condition.  I have seen it first hand as I have gone to many of my wife's appointments.    My intention here is to not call out any specific doctor - if anyone reads this, lives in the NJ area, and wants our input on the doctors we have seen, I will gladly discuss.  But this isn't the forum for me to bash anyone, as much as I would love to.  There was one doctor we went to nearby who had absolutely no idea what this condition was about - what is worse is that he tried to pretend that he did.  There is nothing worse than that - if you don't know about the disease, just come right out and tell us that.   Don't waste our time, don't waste your time, and don't waste the time of the people in the waiting room who may have conditions you actually understand.     This doctor obviously read a page or two of a journal at some point, because the first things he said were:  "You are too young to have this condition" and "Are you diabetic?"

First of all, age is not much of a factor in Gastroparesis - gender does play a big role (Females are much more likely to get the disease than males), and yes - being diabetic increases your chances of getting the disease.  But in no way is Gastroparesis only connected to being diabetic.  Nothing can be further from the truth.

In any case, this doctor pretty much talked to us for 15-20 minutes and ran us out of his office as if we were sticks of dynamite ready to explode.   (I won't even get into what his bill was for the day - thankfully, we have insurance - but even the copay seemed like a ripoff).

The bottom line is this:  There is nothing wrong, of course, with going to see as many doctors as you possibly can to try to get a better grip on the condition.  However, in a disease like Gastroparesis, most patients know a lot more than the doctors do.     If you find a doctor who seems to know what he/she is talking about, emphasizes with your condition, and does everything in their power to help treat it, stick with them - they are rare.    If you read up on new treatment options or new diagnostic tests, be sure to tell them about it.  Even some good specialists don't keep up with this stuff at all times.  Educate your doctor as much as they educate you.

We found a great specialist in the Philadelphia area.  We have a local doctor who at least understands the condition that my wife can go see, as well.    But you have to be your own advocate.  And if a doctor asks you some weird questions, don't walk to the door - RUN to it.    There is no need to even waste your time.

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".....

An Introduction......

As the title of this blog suggests, I don't suffer from a chronic illness.  I am also not a doctor, not a specialist, not a therapist, or in any way involved in the medical field.  To be exact, as a computer programmer, I am about as far from those fields as you can possibly get.

So, without any real expertise or any kind of background to help others physically, what credentials do I actually possess?

I live with someone who has a chronic illness - Gastroparesis to be exact.    This blog will be from that perspective - from someone who deals with the ups and downs a loved one experiences when fighting a dangerous, frightening, and often incapacitating illness.  In this case, the person in question is my wife - a woman who was in complete and normal health until only a few years ago.   So what happened?  Why did it happen?   And what has our journey been like?     It is impossible to know the what and why - all we can go by are theories - but I will try my best to discuss my journey and give you some insights on the condition itself.  It is not from a professional's perspective - but Gastroparesis is one of those illnesses where finding a professional's perspective is not easy.   And, surprisingly enough, despite the overall ignorance and complete misunderstanding of the disease, it isn't even rare.  It isn't one of those diseases that a doctor sees once in their lifetime.  It is a disease that affects millions who know they have it and possibly a million more who don't.  

So, here is hoping the journey in this blog isn't a long one (because that would mean my wife is back to be healthy and doing the things she loves to do!)  But, in the meantime, I will keep this updated regularly.