Many Awareness Campaigns have beautiful Spokespeople posing in advertisements and doing press conferences... flashing perfect smiles at the cameras and giving a 'pretty face' to the condition they are bringing forth. Lets face it... the general public likes to look at pretty people and will listen to what they have to say.
Gastroparesis is not pretty... how it affects the body is not pretty... how it makes you feel is not pretty.
Sure, it would be great to have a beautiful face out there getting attention for Gastroparesis and other Gastric Motility Disorders but the reality is that what this invisible condition does to our bodies is insidious and cruel. We have imperfect teeth from acid damage, bloated bellies, scars from procedures, dull hair and brittle nails from malnutrition, premature wrinkles from dry skin and unconscious frowning from pain... the list goes on and on.
Personally, I HATE having my picture taken and avoid it at all costs... heck, the picture I use when I have to use a picture is one from my 20's when my Gastroparesis was new and the affects were few and this blog post is as much for me as it is for any readers that come along. Call it my personal coming to terms with the fact that I will not look like that again and that I have to accept what I look like and show my face to the world as what Gastroparesis is for me... not what I was before it.
Why am I writing this blog post?
I think that it is important to bring to light the real faces of Gastroparesis... with all the flaws and imperfections as they are. Perhaps the reason that Gastroparesis and other Gastric Motility Disorders are an Invisible Illness is because we try so very hard to hide the affects and that can make it harder for others to feel that visceral connection since we often 'see' more than we hear.
It is time to put away the concept of vanity and instead take that terrifying step into the stark light of day and scream out to the world "I am the face of Gastroparesis (or your Gastric Motility Disorder) and I will not hide the truth!"
Some of us are extremely thin, some of us are overweight or even obese from the strange and cruel process of our conditions and we want to fade into the background. Society dictates that only the 'pretty and perfect' should be seen and we feel judged every time we leave the house.
There is a report from 2008 that stated that Gastroparesis itself affects 4% of the US population or one in every 25 people and many people are shocked when they hear those numbers but the sad truth is that the Awareness is low because we are afraid to let the world see us as we are.
If we want to really make an impact then we have to get people to see is for what we really are and not be afraid of being seen.
There are people out there who have the diagnosis who are not on the internet and have no clue that there are so many like them and they do not have to go through this alone. There are people out there who are suffering undiagnosed because no one has ever put the pieces of their puzzle together who are feeling helpless and wondering about their sanity that could be helped if they just knew to ask for the proper testing.
What Gastroparesis has done to me is not pretty, it is an ugly condition... but I am NOT ugly and neither are YOU! We are the real faces that need to be seen and the voices that need to be heard.
I am going to take my first big step soon... in just a couple of weeks my youngest is graduating from High School and I will allow my picture to be taken at that time, both with as much make-up and hair supplies as I can glob on to cover the affects of Gastroparesis and without and I will (gulp) share those pictures.
We need people to be willing to be Spokespeople for this condition all over the world, people that are willing to let the world see them and all of us... to make this invisible condition 'Visible'.
Penny, this is so beautifully written, and I can relate to so much of what you said. I am one of the few that have gained weight with my gastroparesis and chronic intestinal pseudo-obstruction. I actually have total digestive tract paralysis, because I have achalasia (motility disorder of the esophagus), and colonic inertia as well. I am on a g-tube and I vomit frequently. I've had gastric bypass surgery and I have cystic fibrosis. I've had multiple ulcers and hernias. I'm now in a wheelchair because I had such severe vitamin malabsorption that I have significant nerve damage from L5 down to my toes. I have been completely malnourished and still not lost any weight. No doctor can explain that one. While I was waiting for my g-tube, I went almost 12 weeks on just clear liquids and I barely lost weight, despite having very low albumin and prealbumin levels and anemia. Again, no reason why. I'm losing my hair, and I've had two teeth break off in the past several months. It sure is frustrating! Thank you for writing this post! ~ Aliza
ReplyDeletePenny,
ReplyDeleteI agree with what you stated. I fight so hard to try to seem normal for my family and friends but this disease is tearing me apart. I'm constantly fighting to keep enough weight on so they don't hospitalize me. I'm allergic to all of the medications they've tried and I've even gotten the gastric pacer and feeding tube and still can't gain weight. All I've wanted all my life is to have a family and this disease is making it impossible. I can't gain enough weight to support my own body let alone a baby. My husband seems to think it is something I choose to have. That I choose not to eat. I just want my old life back before this disease destroyed me. No one knows what it is and say I look thin but perfectly healthy. Its not an eating disorder and I know you know that but people don't seem to understand. It is good to know I'm not alone in my fight.~ Chel