Adventures with Gastroparesis

Gastroparesis is only predictable in its ability to strike at any moment.  You never know when, where, or for how long but you do know that it will inevitably strike.  It doesn’t matter how many things you do “right” (more on this in future blogs), you will inevitably crash.

As mentioned previously, I have been working my way out of a flair, but this morning I woke up with extreme nausea and stomach cramping and began to worry I was about to go into a tailspin…again.  Sure, many people without GP have this happen at different points in their lives.  So what makes this any different?  The key difference for someone with Gastroparesis is that you have it happen almost weekly.  The nausea and cramping that we feel has been compared to morning sickness.  So for any women out there with children, imagine having morning sickness for the majority of your life.  Now imagine having morning sickness for the majority of life and knowing that it will never go away for more than a few days.

As a GPer you start to think that waking up this way is “normal” and that everyone must wake up in agony on a frequent basis.  You truly go through bouts so bad that you actually forget that the agony doesn’t occur for everyone in the world and have to remind yourself that what you are feeling isn’t “normal”.  You go about your day feeling extremely uncomfortable and worried that you are about to lose what little food you have in your stomach.  You go about your day because you don’t know any different.  You go about your day because what you are feeling must be “normal”.  If what you are feeling is “normal” then this must mean that all of your coworkers can power through it.  If they can power through it, then surely you can?

This is the thought process that prompted me to power through and go to work today.  If everyone else can work under these conditions then surely I can.  However, at some point in the day you look around and it dawns on you that no one else feels like they are about to double over with constant jabs to the gut.  You realize that when they look at you, they have no idea the pain you are in because you look “normal” on your outward appearance.  Then you hear the dreaded words that no one with a chronic illness wants to hear…”But you don’t look sick”.  This is often said with the intent of making you feel better, but it doesn’t.

You want to ask “what is sick supposed to look like”?  You begin to wonder if they believe that you are sick (more on this in future blogs).  You wonder if what you should do to prove how sick you are to them.  Should you take a short video the next time you are screaming in pain?  Should you show them the photo of the number of pills/supplements you take in order to eat solid food merely once per day?  Should you invite them over the next day you are in the bathroom for hours (yes, literally hours) vomiting?  Should you invite them to the MedExpress the next time you get an IV because you haven’t been able to eat anything for a week and you need to get nutrients somehow?  Should you invite them over to stare at the wall with you during brain fog?  The list goes on and on.

You will likely never see any of this, unless you are the caretaker of someone with GP.  GPers are EXTREMELY good at hiding just how sick they feel.  This is partly due to the fact we really don’t know what it is like to feel “normal” and partly due to the fact that we don’t feel like explaining all of this again and again and again every time we get sick.  The interesting thing about explaining being sick is that we are often treated as if we aren’t doing everything that we can (more on this in future blogs).  All of this is exhausting.  Since we are limited on energy to begin with, we decide to conserve our energy and politely say “thank you” when really we are screaming inside that we would like them to experience just 1 week of our lives to see what sick really does look like.

~ Millie