Feeding tube care is often misunderstood, reduced to a medical moment rather than recognized as part of daily life. For Olivia, a feeding tube is not just a device—it’s woven into her routines, her identity, and her ability to live fully.
In honor of Feeding Tube Awareness Week, Olivia shares her personal experience living with a feeding tube, from quiet morning routines to the way it reshaped how she sees herself. Continue reading to learn more about Olivia’s journey, her reflections on care, and what feeding tube life truly looks like beyond the appointment.
Feeding Tube Care as Part of Daily Routine
Feeding tube care for me is mostly in the morning and nights. It has just become a few extra steps in my morning routine as well as my night routine. Cleaning/stoma care as well as any flushes and meds.
When Care Becomes Second Nature
When no one is around, feeding tube care is like switching into autopilot. I am so comfortable with my routine and with my feeding tube itself that it’s just second nature for me at this point in my journey. It is also kind of a reflection time sometimes. Being able to see how far I’ve come and how much of my life I have gotten back because of my feeding tube.
Identity Beyond Illness
For a while I struggled with how I see myself when my illnesses aren’t the focus. As I’ve gotten older I have realized I am more than my health issues and they aren’t the first and foremost defining characteristic of me. I see myself as a creative, adventurous, and smart individual.
Reclaiming Self-Expression
Something that feels ordinary now that didn’t once was the fact that I no longer have to plan my outfits around my feeding tube. I know that seems a little surface level but I love being able to express myself through my appearance and for several months after getting my feeding tube I couldn’t have anything over top of it because of discomfort. Now my tube feels like an extension of myself and isn’t as tender. Sometimes I can even forget it’s there entirely!
What a Feeding Tube Has Taught Me
Having a feeding tube has taught me that my body can handle A TON. It has been through so much and even though I don’t have the typical way of receiving nutrition/hydration etc. I still have a way that works best for my body. It has reaffirmed my thoughts that you shouldn’t be ashamed or self conscious of medical devices and to take the negative thoughts and turn them into powerful ones. Having a tube has also taught me it’s always okay to ask for help when you need it. So many people are willing and able to help you or lend support you just need to be confident enough to ask!
Conclusion
Stories like Olivia’s help expand the conversation around feeding tube care, visibility, and what living with medical devices actually looks like day to day. By sharing real experiences, we create space for understanding, dignity, and support beyond the clinic.
Explore more Feeding Tube Awareness Week stories and resources on the blog to continue learning from the voices of our community. Follow Olivia on Instagram to learn more about her journey.
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