Autumn’s Story

My Feeding Tube Journey

Transitioning to a Feeding Tube

When I first had an NJ tube in 2023, I struggled with anxiety about how others would see me. My mind kept telling me, “People, family, friends, and team workers will judge me for wearing this.” Because of these worries, I had an on-and-off relationship with the NJ tube. Eventually, I stopped using it, but by 2024, my health had declined so much that my family became deeply concerned. I knew I needed to do something, so I decided to try the NJ tube again for one month. After that, I transitioned to a GJ tube. This step was difficult, but I knew it was necessary for my health.

Challenges I Have Faced

Being DeafBlind has made this journey even more challenging. I haven’t been able to find another adult like me with a GJ tube, so I often feel alone in my experience. Communication barriers with medical teams have also made it harder to get the support and answers I need. Work has been another struggle. I don’t feel confident bringing tube feeding into my workplace, and I worry that it doesn’t “fit” with who I am. This has made it difficult to adjust and feel like myself while working.

Social Life & Support

Despite my challenges at work, I have been open about tube feeding in my social life. I am not embarrassed by it because my family and friends have been supportive. Their acceptance has helped me feel comfortable and reminded me that this does not define who I am.

Tips for Others Going Through a Similar Experience

• It’s okay to struggle. Adjusting to a feeding tube takes time, and it’s normal to feel uncertain at first.

• Find what makes you comfortable. Whether it’s certain tube accessories, clothing, or routines, small adjustments can make life easier.

• Advocate for yourself. As a DeafBlind person, I have learned that medical teams don’t always understand my needs, so I have to push for the right care. No one knows your body better than you.

• Your feeding tube does not define you. It’s a tool to help you live, not something that takes away from who you are.

Impact on My Daily Life

Negatives: Tube feeding has been challenging in many ways: physical discomfort, extra medical care, and mental struggles, especially with confidence at work. It has also been frustrating dealing with medical teams that don’t always listen.

Positives: The biggest benefit is that it gives my body the nutrition it needs, which keeps me stable. It has also taught me how to advocate for myself and accept help when I need it.

Final Thoughts

This journey has not been easy, but I am learning to navigate it one step at a time. While I still face challenges, I am grateful for the support of my family and friends. I hope that by sharing my experience, I can help others feel less alone in their own feeding tube journey.