What it is like to live with a silent illness: Gastroparesis and Other Chronic Illnesses

by hippyrainbow

A good read for anyone who loves someone who suffers from chronic illness

Gastroparesis is one of those not-well-known "silent illnesses." What does this mean? A silent illness means that to look at you, one would not guess that you are sick. Because one can't "see" it, it is considered silent. There are many, many illnesses that fit into this category. I am one of the hundreds of thousands of us out there. I am not alone, but it sure feels like it. Gastroparesis, loosely translated, means "frozen (or paralyzed) stomach." But those of us who have it have much more paralyzed (or frozen) than our stomachs. Social circles, employment capabilities, family/ friends relationships, emotional, psychological, and physical turmoil that can turn our worlds upside-down. Depression and anxiety compound ten-fold on the physical symptoms to the point of feeling like you've been beat down into the ground. You can have all the happy, positive intentions in the world, it doesn't matter. No one is immune to the heavy emotional baggage that comes automatically with having a chronic, silent illness. Imagine the horror of having what feels like the stomach flu or food poisoning almost every day of your life, and then having well-meaning folks say things to you like, "Well, have you TRIED to get out of bed?" It can be incredibly frustrating.

I am well-known on Facebook for posting glamorous photos of myself just to show my friends, "I'm ok, no worries." But I'm not. There is an app for that. There is an app for everything. When I take these pictures, no one knows that I've been curled up on the couch for hours with my puke bucket and sick as a dog. The app actually does my hair and make-up for me. Why do I do this? "Why bother?" you might ask. Simply put, because that is what I want to be remembered for. I want to be remembered as smiling, looking beautiful, with actual color on my face. I don't want to show the world how incredibly miserable I feel almost all the time.

My loved ones are constantly telling me to go back to the doctor.  They mean well and I love them for this.  But this is a personal journey that I have discussed thoroughly with my Doctor.  At some point, (for me that point was five years) doing the same hospital tests and treatments with the same results wears you down, in every possible way.  Some say I have given up.  Maybe, but I see it differently.  I finally reached a point of acceptance.  I finally had enough and just thought, "OK Universe, this is what it is.  I don't want any more tests.  I just want to be calm and at peace with all of this."  My outlook on life turned around.  I stopped focusing on tests, treatments, and diets and started looking for joy wherever I could find it.  I purposely surround myself with positive people.  I watch comedies on TV because I love to laugh.  I have every episode of every season of Golden Girls memorized for one reason.  It brings me joy.  No matter how sick and miserable I feel, it makes me laugh.  Every time.  That is what works for me, so I stick to it.

So what can you do to help your loved one with a chronic illness?  Aside from the obvious (offering to help with grocery shopping, errands, etc.), help them find something that personally brings them joy and encourage them to take time to enjoy it, no matter how silly it seems.  Everyone's joy comes in different packages.  Don't hold them to dates. Explain to them that you are perfectly fine with waiting until that very day to see how they are feeling before you nail down times and dates of going out together.  And be understanding when they just can't bring themselves to go out.  They deserve your compassion.  And the most important thing you can do to help: just be a friend.  That is truly the kindest, most appreciative thing you can do.

                                                                                                                       Paulette Page

Updated: 12/06/2015, hippyrainbow
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Veronica on 02/02/2016

This is truly inspirational and I feel humbled to read it. You are a remarkably strong person.

I know you want to be brave and private and I respect this. But I think your wonderful attitude and how you keep yourself looking so gorgeously pretty could help a lot of people who are struggling.

Well done and ty for posting.

patadin on 02/02/2016

This is very stirring and you sound very - I would say brave but it sounds more like at-peace. There are some people who let everyone know when they feel any amount of pain. Then there are others who deal with it and do not seek to be the center of attention because of it but would rather enjoy life and enjoy others as well. It wasn't until late in her life that I realized the pain my mother had endured every day for years. She just kept it inside and outward she did what she could for everyone else. Thank you.

simone on 12/29/2015

I feel your pain. I have rheumatoid arthritis and fibromyalgia and often can't get up out of bed. People are always saying, "You don't look sick" but that's because I don't let them see that side of me.

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