Meet Erica
Erica is a former elementary school teacher and a chronic illness and disability advocate who cares deeply about helping others feel seen, valued, supported, and heard.
For her, advocacy has become more than something she does online. It is a way to turn some of what she has lived through into connection for someone else.
“If my account can do that, then I’ve achieved my lifelong purpose.”
Living with severe gastroparesis has changed Erica’s life in ways that extend far beyond the symptoms themselves. For Off the Record, she opened up about leaving the career she loved, the daily work that comes with tube feeding, the small acts of support that can mean everything, and an assumption about gastroparesis she hopes more people will question.
Keep reading to hear Erica’s story in her own words.
When Gastroparesis Changed the Direction of My Life
In March 2024, after spending almost 100 days hospitalized between two different hospitals, my gastric emptying study showed severe gastroparesis. I needed a GJ feeding tube placed, first a dangler and later a low-profile GJ MIC-KEY button.
Before all of this, I was an elementary school teacher certified in both general education and special education for grades 1–6. Teaching was such a big part of the future I had pictured for myself.
I eventually became too sick to return to teaching and am now on disability. Gastroparesis altered my career path and changed the entire trajectory of my life in a way I never expected.
What a Difficult Day With Gastroparesis Really Looks Like
A difficult day with gastroparesis can look different every time. Sometimes I wake up with horrendous stomach pain and spend the entire day in bed. Other times, my feeds explode everywhere and stain one of my favorite sweatshirts, which is always a bummer!
There are so many little things that become part of everyday life with a feeding tube that most people never have to think about.
The stomach pain can make it impossible to do anything for an entire day or sometimes even an entire week. Even finding the energy to set up my feeds, crush my medications, and push them can be really challenging.
People don’t always realize how much time and energy these routines take compared with what someone might see from the outside.
The Little Things That Make Me Feel Supported
Something really sweet happened to me recently. I needed extra connectors for my MIC-KEY button because mine were getting ratty and gross, and my replacements had been on back order.
Someone who no longer needed hers sent me a whole bunch, more than she even needed to give me. She also included tubie tape and two port covers as little extras.
I felt like the luckiest girl in the world. Something that might seem so small to someone else meant so much to me because she understood exactly what I needed.
It truly is the little things and the tiny joys we can find while navigating difficult diagnoses like gastroparesis. I’m so grateful for my fellow GP warriors and friends. I hope they never feel defeated by this disease and know they will always have a friend in me.
Off the Record: What People Don’t Always See
I’m living in a bigger body now, and one thing I don’t talk about often is how complicated that can feel while also living with gastroparesis and malnutrition.
I used to be much smaller, and my weight has fluctuated a lot throughout this disease. I think people often picture someone who is malnourished as looking a certain way, but people can experience malnutrition at different body sizes.
That assumption can make an already difficult experience feel even more isolating.
I share this vulnerably because I know I would have benefited from hearing someone talk about it at the beginning of my gastroparesis journey. I hope saying it openly helps someone else feel a little less alone.
Living with gastroparesis has taught me again and again that you can’t always understand what someone’s body is going through simply by looking at them.
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