I’m sure you haven’t heard of it, but I was diagnosed with a debilitating stomach disorder almost six years ago. It’s called Gastroparesis, also known as paralyzed stomach, a type of digestive tract paralysis. It’s deemed rare yet, over 5 million men, women, and children suffer with this horrible, unknown disorder. That’s 5 Million people who struggle with debilitating symptoms of nausea, vomiting, stomach distension, pain, and the list goes on and on. The healthcare field barely recognizes this disorder and so many are left stranded and alone to fight this battle, to fight to survive.
LIVING WITH A PARALYZED STOMACH
Imagine going to sleep in your comfy bed, all snuggled warm, tummy full of dinner. Maybe you have slight discomfort, but that’s just the nice feeling of being satiated from a great night’s dinner with your family. Now, it’s the next morning, and your stomach STILL hurts and it looks like you could be a few months pregnant. Then nausea hits you and before you can even make it to the toilet, you’re covering your mouth holding back vomit and undigested food from spewing everywhere. Now imagine, it never stops. Ever. You never get better.
Doctors don’t know what’s wrong. You wait months (literal MONTHS) just to be seen by a specialist that MIGHT listen to you this time, MIGHT have a solution. But just like the last one, and the one before that, they don’t. There is no cure. Neither are there significant, affordable treatments. You spend your days literally starving, desperate for some semblance of normalcy.
WHAT YOU LOSE
You can no longer indulge in burgers, pizza, ice cream, salads, veggies, even certain fruits, liquids, candies, sometimes even water. Neither can you enjoy any social events because you suddenly realize, they’re ALL built around food, and even the thought of food makes you want to hurl.
That higher-education degree you wanted – sacrificed. Your dream career – dashed. Day-to-day symptom management is nearly impossible. You’re in crippling debt from ONE visit to the hospital. Feeding tubes, ostomy bags, IV’s and medical jargon become all you know. Now, your illness comes first before everything. You lose friendships, you lose relationships, you lose doctors, you lose loved ones and family you thought would always love you.
WHAT YOU GAIN
But you DO gain strength and you DO gain compassion. You gain understanding, and self-love. Acceptance becomes a part of you. You gain the love of the people who are meant to be in your life.
And there is GOOD, despite the terrible affect this illness has had on my life and how it has changed so many aspects of what I thought my life would be. I have found some of the loveliest, strongest people who I can trust and rely on any time I need support, and vice versa. I’m NOT alone in my fight and collectively, we are some of the most amazing people on this planet.
My advocacy naturally focuses around my paralyzed stomach. I suffer with this illness and it has tried to take my life from me. But I also advocate to help others who have been in my position – diagnosed then tossed to the curb. For those have a feeding tube placed and then released with NO home aide or guidelines. I advocate for those who cannot advocate for themselves and those who are afraid to. I want to advocate for myself and for the ones I love and the ones who struggle and fight every day.
GASTROPARESIS IS SO MUCH MORE THAN A PARALYZED STOMACH
Gastroparesis (GP) not only affects the sufferer physically but, mentally as well. I struggled with anxiety and depression since I was young. However, it was NEVER on the scale that it is today thanks to GP. Mental health is SUCH an important topic for people living with chronic illness. There’s a lot to say and I’m going to say it.
From the Editor:
Kat wrote this article for us to help raise the volume on Digestive Tract Paralysis Awareness Month (August 2019).
If you want to learn more about how Gastroparesis or DTP diseases affect people’s lives here is some recommended reading:
Samantha Smith’s “What Makes me Different Makes me Strong” (4 minute read)
Carolanne Monteleone’s “Feeding Tube Travel Troubles with the TSA” (3 minute read)
Or you can go to our homepage and search for terms that interest you.
Katharine Navarro (aka KAT) struggles with Gastroparesis, generalized anxiety disorder, and her lungs like to forget how to breathe regularly thanks to her asthma. Kat is a warrior, vlogger, artist, and fur mama to 3 troublesome cats and 1 corgi dog. She is a Facility and Safety Clerk in Northern Virginia pursuing a Degree in Radiology. Kat advocates online and vlogs her life with Gastroparesis. She discusses topics common to the chronic illness community so others can engage and spread awareness.