It’s been over four years since I became ill with a severe case of gastroparesis. Gastroparesis means “paralyzed stomach” and is most often associated with the classic symptoms of nausea, vomiting, bloating, early satiety, abdominal pain, malnutrition, weight fluctuation, and of course, the inability to eat. Every person with gastroparesis experiences it differently and the severity of the illness is like a scale. Some patients just need to slightly modify their diet, while others depend on tube feedings or TPN for survival. If you ask any gastroenterologist, that’s probably the number one reason why gastroparesis is such a hard illness to treat. No two patients are exactly the same and everyone’s symptoms vary.
When I first became sick, I immediately began to lose weight. Symptoms didn’t gradually weasel their way into my life but rather swung through on a wrecking ball. I went from being a perfectly healthy college student to an incredibly sick young woman crippled by some mysterious illness literally overnight. I couldn’t eat at all. I survived on gatorade and vegetable broth with a little bit white rice thrown in. I lost about 40 pounds in a month. Honestly, I considered the extreme weight loss the silver lining of this crazy illness.
I had been overweight my whole life and for the first time, I felt like I looked good, even if I felt absolutely awful. I secretly loved watching the numbers on the scale dwindle until reality smacked me in the face when my GI said I needed a feeding tube. I was feeding tube dependent for a while but after I stabilized my weight and began to eat a handful of safe foods successfully, the GJ tube was removed. My weight fluctuated within a ten pound range and while I was still pretty sick, I didn’t really look sick anymore. My ribs no longer protruded out and I couldn’t fit my waist in between my two hands. My thigh gap disappeared and my cheeks came back to life. But I was still thin. When I told people I was chronically ill and couldn’t eat, I was met with the typical sympathetic looks and well wishes.
Fast forward a few years and here we are today. I’ve been surviving off of only Ensure for over nine months now. It’s the longest I’ve gone without solid food since gastroparesis made itself at home in my body almost four years ago. Luckily, the Ensure is allowing me to finish up college (something no one ever believed I’d be able to do) and manage a social life somewhat. It also has me at a solid weight. Perhaps too solid for my liking, but I’m in a healthy range. So, my point isn’t to dwell on how frustrating it is to have the same thing every single day for months on end. Rather, I want to admit something. I’ve found it difficult to explain and every time I’ve tried I feel like I sound completely irrational.
I’m such a huge advocate for body positivity, as I’ve struggled with loving myself for most of my life. So, I don’t like putting a belief out there that contradicts everything I seem to preach. I, also, strongly dislike the fact that I feel the need to “prove” my illness to others. As if I’m not really that sick if everyone I encounter can’t tell. But I see the facial reactions when I say, “I have gastroparesis. Long story short, I can only have Ensure. You know…that nutritional drink for old people”; it’s a mixture of disbelief and confusion instead of sympathy. And I’m not saying I want sympathy because I don’t. I just want to tell someone I’m sick and not have to delve in to why not everyone with gastroparesis looks like they’re starving to death.
I want to look the part. Mostly because having an invisible illness is exhausting and daunting, but also because I simply don’t want to answer the question of how I can look so healthy, yet be so sick.
This piece was written by Carolanne Monteleone who courageously shares her battle with gastroparesis to help raise awareness.
you can find Carolanne at https://aheartforhumanity.wordpress.com