Emily’s story

Written by Emily | Gastroparesis patient and advocate

My name is Emily and I have battled with gastroparesis for the past 7 years. I was only 13 when I first began to experience fatigue and abdominal bloating after eating. At the time, I was training rigorously for the Australian Aged National Swimming Championships and just put these symptoms down to training too hard, foregoing sleep, or simply growing. However, with my healthy diet and exercise regime, incredible support team and blood test results coming back clear, I knew that all this didn’t quite fit together. My symptoms continued to progress until, at age 16, I was in so much pain after eating that I couldn’t move.

During this time, I visited numerous doctors, each ordering various tests to check for seemingly everything. Eventually, it all seemed to come back to the same thing, that I should see a psychologist because it was all in my head. The pain continued to worsen, and the bloating continued so that I often looked heavily pregnant. This lead me to constant hospitalisations all without answers. I started to wonder if the doctors were right, if I was making it all up. Could it all be in my head?

It was gastroenterologist Dr. Jarrod Wilson that finally put it all together. He arranged for me to undertake a gastric emptying study which determined I only digested 1% of the food that I eat, confirming my diagnosis of gastroparesis. This was when the next chapter of my battle began; we now knew what was causing my issues but were yet to get on top of it. I tried all sorts of different medications to relieve my symptoms but unfortunately had severe reactions to each of them. Currently, I rely solely on dietary modification to manage my symptoms and while this reduces the bloating and discomfort to an extent, it doesn’t curb the unrelenting pain. My last resort is to use a feeding tube. While this is a solution of sorts, I have seen the effects this has on the lives of those with gastroparesis and want to go as long as I can manage before going down this path.

A normal day for me is more than the word ‘pain’ suggests. It feels like there is a fire lit in my stomach, that gets hotter and stronger throughout the day. It feels like there is someone twisting my insides as tight as they can until it tears. It feels like a ton of bricks bearing down upon me. All this happens not only all day long, but every day. I have ended up lying on the floor in tears more often than I can count. I can’t wear my normal clothes over my bloated stomach, I can’t walk from my car without feeling a crippling exhaustion. This constant discomfort has become my normal.

The impact of gastroparesis was not limited to this. I face a host of additional issues; constant weight loss, rheumatoid arthritis, Raynaud’s phenomenon, chronic fatigue, autoimmune disorders, constant recurring infections, endometriosis, muscle weakness, hair loss, pale skin, cramping, pins and needles, and sleepless nights. Each of these would be enough to bring anyone down and yet here I am still standing after battling with them all. All of this takes a psychological toll as well, and for me this has manifested as a constant anxiety. It’s frustrating finding yourself in various social situations where no one else understands what you’re going through, and even those that try to aren’t able to fully grasp the gravity of living with gastroparesis. Beyond this, there is an underlying uncertainty; I don’t know what gastroparesis has in store for me.

My message to other gastroparesis sufferers can be summed up in one word; resilience. In the face of an unremitting chronic condition, you will get knocked down time and time again. Often in new ways, at unexpected times. Through all this there is very little we can control, but we can make sure we get back up and continue fighting gastroparesis each day.

I would like the public to know what gastroparesis looks like. I am constantly told I look completely fine, despite everything that is raging inside. Not every illness is visible to the naked eye. I refuse to let this illness control my way of life, and I will continue to fight to look normal on the outside, to live normally. But make no mistake, regardless of my brave face, the pain I endure daily and the other symptoms I suffer without relief are very real.