By Brittany Walsh
Table of Contents
Being medically complex and living in isolation
As a medically complex adult, daily life can feel like navigating a labyrinth.
That maze took an unexpected turn when I faced living with a feeding tube.
I woke up in January 2021 to feel my body fail (after 33 years of progressive, complex illness). I had spent so long in isolation from the pandemic and I know that it was that time that caused my body to revolt.
Suddenly, the simple act of nourishing my body became a complex process, challenging not only my physical health but my mental and emotional well-being.
I had to confront the stigma and misconceptions surrounding tube feeding and accept that my nutritional needs couldn’t be met through conventional means.
In May 2021, I accepted that I needed a feeding tube.
Living with a feeding tube
Transitioning to life with a feeding tube wasn’t easy. I felt disconnected from my body and struggled with the idea that I was “different” from others who could eat without medical assistance.
My experience as an adult living with a feeding tube has been a transformative journey. It has taught me how to nourish my body in new ways, redefine what health and wellness mean to me, and find my voice as a disabled writer in a world that often overlooks the potential of disabled individuals.
Over time, I learned that tube feeding is how I provide my body with the nutrients I need to thrive.
Understanding the nutritional science behind tube feeding and advocating for myself to my healthcare team empowered me. I began to see my feeding tube not as a limitation but as a tool that enables me to live a fuller life.
I spent months in the hospital experimenting with different formulas and feeding schedules, learning to listen to my body and respond to its needs.
This journey has taught me that nourishing myself is not just about food; it’s about care, attention, and respect for my body’s unique requirements.
Redefining health
One of the biggest challenges I faced as a tube-fed adult was redefining my concept of “health.” Society equates health with physical appearance or the ability to perform certain activities, but my experience has shown me that health is far more complex.
I am not interested in meeting society’s standards; I prioritize finding balance and well-being within my own circumstances.
Living with a feeding tube has forced me to focus on what truly matters: my energy levels, ability to pursue my passions, and overall quality of life.
I’ve had to learn that health is personal and subjective, not something that can be measured by numbers on a scale or comparisons with others. It’s about thriving in my own way, at my own pace, and with the unique tools I have at my disposal.
As I adapt to my new normal, I feel a growing desire to share my experiences and connect with others in the tube-fed community. My voice; my story, could be as influential as any non-disabled person.
By speaking openly about my journey, I could help others feel less alone, challenge stereotypes about disability, and advocate for better understanding and acceptance of tube-fed individuals.
Sharing my experiences on social media has allowed me to connect with a supportive community of people who understand the challenges and triumphs of being tube-fed.
Through my writing, I want to bring people into disability, dispel myths about chronic illness, and encourage others to see the strength and resilience that come with living as a medically complex, disabled adult.
Being tube-fed doesn’t diminish my value or capabilities; it’s simply part of my story.
Living with a feeding tube has taught me invaluable lessons about nourishing my body, redefining health, and finding my voice.
My feeding tubes are not a symbol of weakness – they are a testament to my resilience and adaptability.
By embracing and sharing my journey with you, I aim to inspire you to see your worth and live your life proudly and visibly.
Sincere thanks
I’m honored that Brittany has shared her story for The Blending Dietitian blog to help raise her voice and other medically complex individuals just like you. I first met her over social media and was drawn to the inspired way she moves through this world. I hope you found inspiration and strength from her message as well.
If this resonated with you, please share this article with a friend that needs to hear the message.
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About Brittany
B. Walsh is a writer and disability advocate living in Buffalo, NY. She was born with Ehlers-Danlos Syndrome and also manages POTS, MCAS, and Multiple Sclerosis. Her experience with tube feeding, including the use of both a G-tube and J-tube, has led her to explore alternative feeding methods, such as blenderized diets. Walsh is the author of Manning Up, a novel in verse about life with an eating disorder, and is currently working on a new book about disability and identity titled, “Uncomfortable Angles.” Find her at beewalsh.net and add her on Instagram @xxgirlkingxx.