Yet still, nobody recognised the severity.
When you have a terminal illness or Cancer, it’s all people talk about. They continually ask you how you are doing and if you need anything. It’s socially acceptable if you discuss your illness as it’s deemed as something serious and life changing or even life threatening. But with chronic illness, this is not the case.
Most people seem to care for about five minutes. When they realise you will never get better, most stop caring.
They stop asking how you are doing. They don’t ask you if you need anything - if they even did in the first place.
And you are told to stop talking about your illness. You are told that you are negative if you so much as bring it up.
It is as if our chronic illnesses do not affect our lives enough that we even have the right to talk about them.
I am not my illness.
But my illness has changed me. It has changed my life.
I may not have a terminal illness, but I have a chronic illness that claims lives daily.
I have a chronic illness that stole my healthy body, my youth, my job, and my friends and some family members’ care and support.
I have a chronic illness that doesn’t illicit most people’s compassion or understanding.
Imagine the last time you had the flu. Remember the nausea that you felt - as if the entire world was spinning and as if you would throw up at any second? The smell of food was revolting but people around you continued to eat and continued on with their lives?
Yet people also helped you.
They took care of your kids, did the dishes, or helped clean the house. They told you that they hoped you felt better and that they were praying for you. Your employer understood and allowed you the time off you needed to heal.
Now imagine if you lived that way every day. Imagine if you felt nauseous and had pain every single day for the rest of your life but without the care and support of others or without the support of your job.
How would you feel?
People around you will continue to eat. They will continue to enjoy their lives. Even if it makes you physically ill, they’ll eat right in front of you - foods you will never again enjoy. Many with
Gastroparesis are on a liquid diet, or alternate between liquid diets, soft food diets and solid food diets. Some are even tube fed or on
TPN
(Total Parenteral Nutrition) through the veins, often via a Hickman Line into the heart).
Even if they can eat solid food, few with
Gastroparesis will ever be able to eat normally and have ever changing dietary restrictions.
I continually have to go to parties and endure the smell of food I cannot eat; people constantly discussing how great it tastes and how they wish I could eat it; asking if I want food that I cannot have; longingly watching people eat as I sip my Gatorade...