The Article I Wish I Found When I First Googled 'Gastroparesis'
Like any person newly diagnosed with a disease, back in 2010 I instantly headed to the computer looking for answers. I was met with a lot of clinical and sterilized papers written by the world of academia. I found them to be cold and written with no thought of the patient who might be seeking out not only answers specific to what gastroparesis is, but what life is going to be like for me living with it.
The article I would like to have read would have gone something like this:
Gastroparesis, also known as delayed gastric emptying, is not an easy disease to live with. Every waking, and sometimes sleeping, moment, you are going to feel the worst kind of nausea you have felt in your entire life and it will never really and truly go away. Doctors will give you anti-nausea medications, but their assistance is so short-lived that you often wonder why you were even given them in the first place.
Keep in mind that though doctors have gone through extensive training, they’re not the Fountain of Knowledge. You will come to realize that doctors don’t know everything, particularly when it comes to gastroparesis, and you will encounter many frustrations when it comes to their physicians. Advocacy for yourself, research of the disease, and asking for second or third or fourth opinions will help you find the help you need.
Some gastroparesis patients vomit everything or nearly everything they eat. This causes you to suffer from periods of dehydration, malnourishment and exhaustion. You will also experience early satiety, the feeling of fullness after just a few bites of food. You may go out to lunch or dinner with friends and family and watch as they scarf down heaping piles of food as you push food around on your plate — or in a bowl — because you’re already full three bites into the dish.
Unfortunately there will be a great deal of pain associated with gastroparesis. It will often feel as though there’s an elephant sitting squarely on your belly and you can’t get it to move. Then there’s the frequent trapped gas bubbles that make you feel as though you’re having a heart attack. Rest assured you are not, it’s just gas stuck in your gastrointestinal tract.
You will struggle a lot in your private life because of the general nature of the illness. Friends and family do not understand what you go through on a daily basis just to survive, the unbearable fatigue that accompanies it, and the inevitable secondary disease(s) — it’s sad, but true — that will eventually pop up. The loss of friendships and family members is unavoidable in most circumstances and you feel left to fight this battle alone or seek out others who are fighting the same one.
In the end, whether friendships are lost or gained, whether doctors understand or not, your need to learn to become your own best advocate. From this battle, you will learn you are stronger than you ever thought and will find within yourself a warrior you never knew you possessed.
Being armed with information about what life with gastroparesis would be like for me realistically would have been far more beneficial than clinical, textbook facts. Realizing doctors aren’t as knowledgeable about things as I thought is one more weapon in my arsenal. Preparedness in every manner possible would have helped me navigate the tumultuous waters of gastroparesis.
Follow this journey on Diary of a Gastroparesis Warrior.
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