Gastroparesis

The Invisible Pain

Dealing with Questions

     When you have Gastroparesis you are bound to be asked questions that, to you, are very personal in nature and hear comments that are unintentionally cruel in nature.

     What we have to remember is that questions are asked not to put us on the spot but because the asker simply does not know the answer and is curious about a condition that they have probably never heard of before and comments made are not made to hurt but because they simply do not know that what they are saying is hurtful.

"How bad can it really be?  It is just a stomach ache."

     At one time or another you will probably be faced with this question combines with the statement "It is just a stomach ache" and more than likely your first reaction will be angry and defensive.

     Gastroparesis is not 'just a stomach ache' and we know this... but they don't.

     It helps to be prepared for situations like this in advance so that you can explain what Gastroparesis is in a calm non-confrontational manner.  Instead of seeing this as an intrusion to your privacy see it as a chance to help spread the word about Gastroparesis with good information in a calm manner.

     A good way to answer this is to say-

     "It can be very bad... Gastroparesis means that my stomach does not have normal muscle movements meaning that food is not ground by my stomach effectively so that my intestines cannot break it down and absorb nutrients.  Another problem is that my stomach does not empty as fast as normal stomachs so I get full very early when I do eat and the food can sit there so long that it actually begins to rot in my stomach.  This all means that I am almost always nauseous from the food sitting there and rarely hungry because my stomach empties so slowly.  It is like slowly starving in front of a buffet because I do not get the nutrients I need from the food I am able to eat.  People with Gastroparesis may need feeding tubes placed in through their abdomen straight into their small intestine to by-pass the stomach or IV feeding... there is even a pacemaker much like the ones made for the heart that they can now put in some sufferers that uses electrical currents to make the stomach muscles contract."

"Gee, I wish I could catch that for a while so I could lose some weight so easily"

     This comment can blindside us at times and while they do not mean it to hurt us it can really anger us because we know from personal experience that we would not wish this condition on our worst enemy and they want it?

     This is another case of the person talking not having an understanding of Gastroparesis and just how horrific it can be to the sufferer.

     Something you could say would be-

     If your feet are sore from new shoes would you tell someone that is paralized that you wish you were paralized for a while so your feet would stop hurting?  Of course you wouldn't, because all you would really have to do is take off the shoes.  I know that you do not mean to belittle what I have, but that really hurts.  Gastroparesis is a lifelong condition, I can't stop having it and I can't make it go away.  Immagine having the stomach flu for the rest of your life knowing that there is nothing you can do about it and every bite you take could cause you to be in pain for days.

"Just try a bite... just a taste can't hurt"

     This is a common comment heard at family functions and we were all raised to be polite and try a bite of everything because we know that people put alot of love and effort into making special dishes and if we refuse their feelings could be hurt.

     Often we do not want to make a scene, so we will try that 'one bite' then suffer for the rest of the day when the dish, something that we already knew would not agree with our digestive system, wrecks havoc on our stomachs.  As a result we are often very tense at these gatherings waiting for the moment when someone will come up and ask us to try something and we might start to avoid the gatherings all together, missing out on seeing freinds and family.

      One thing you can say is-

     It really smells delicious but I am afraid that my Dr has me on a very strict diet for health reasons because of a stomach condition I have.  I really wish that I could taste it, I know that you put alot of effort into making it and I know that I will want the recipe because the rest of my family is going to want this again, even if I can't have any I will be able to enjoy all the good smells as I make it.

"I heard that there is a diet pill on the market that slows gastric emptying, are you taking that?"

     Yes, there are actually drugs on the market sold for weight loss that help people lose weight by intentionally delaying gastric emptying!  When I first heard of these drugs I was shocked wondering why the in the world anyone would want to intentionally go through what we do.  (This can actually refer back to the first discussion on this page)

     The best way to answer this question is to tell the person that asked that you have a documented medical condition that has no cure and do not see why anyone in their right mind would ever take a drug that would cause them to suffer what you do.  The main difference between you and them is that they can stop their delayed gastric emptying just by no longer taking the drug while you would love to be able to stop yours but can't.

When you get tired of answering questions

     Sometimes we just want a break from having to focus non-stop on our conditions, cringing at the thought of every discussion starting with 'how are you feeling today?' and the myriad of questions sure to follow.  We just want to be normal and have normal discussions and not have the fact that we are sick or different 'thrown in our faces' constantly.

     Many times the questions come from people who have just gotten the diagnosis themselves and are looking for information and understanding from other sufferers and we have to remember how we felt when we were first diagnosed and how frustrated we were at the lack of information we could find.

     You will have to look at each situation as a seperate entity, if it is someone that knows about Gastroparesis such as a friend or family member you can usually just tell them that you are doing about the same but you really do not want to talk about it right now and they will usually let it go at that.

     When it comes to someone that you know or meet that has no idea that you have Gastroparesis then you can answer with something like "oh, the usual" then move the conversation on to something else.

     When it comes to a person that has just been diagnosed and is trying to figgure things out your best bet is to be honest, but to remind them that no two cases of Gastroparesis are alike and what you have experienced may not be what they do.  Give them web site addressess that you have found helpful and answer what questions you have, but if they begin to cause you stress by making you focus too much on your condition and what you have gone through be gentle but honest in telling them that while you are happy to answer questions about Gastroparesis you really do not want to dig into your own battle with the disease at this time.

-----Gastroparesis----- The Invisible Pain

Created October 7, 2009

The condition may be invisible, but you don't have to be.

Advocate for better research

Spread the word to family and Doctors.

Remember-- You have Gastroparesis but it does not have YOU!

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