My name is Gracie Gardner, I’m 16 years old and living with Idiopathic Gastroparesis. Living with this disorder is definitely not easy to cope with. I’ve had a PICC line along with countless NJ tubes (Nasojejunal feeding tube) and several NG tubes (nasogastric tube). One of the most challenging aspects of having life-sustaining tubes stuck to your face is that it comes with a constant fear of judgment. Would people make fun of me? Would they look at me like a complete outcast, or would they just treat me like a completely different person? Instead, they did the exact opposite. After my first day out and about with my tubes in, I quickly learned that the most important part of accepting my illness was for me to have confidence in myself and to learn to love my tube — and that’s precisely what I did.
Adjusting to medical devices
Both of these medical devices changed my life in several different ways. It was difficult having the feeding tube because I often felt like others were defining me by my illness and were not actually looking at me but at the tube instead. It was also a pain having to constantly change it because it got clogged often. Even so, the feeding tube was actually more manageable than the PICC line, as it was easier to shower with, easier to hook myself up to feeds, and had a much lower risk of infection.
With the PICC line, I struggled to hook myself up on my own, so I was constantly asking my mom for help. When I took showers, I had to wrap my arm because it couldn’t get wet. Again, there was always a risk for infection. However, I always strive to live my life normally and to the fullest with these devices because it’s a waste of energy to dwell on negative thoughts.
4 tips for living a happy tube life
If you’re afraid of what others will think or say about your tube (or any other medical device), here is my advice:
- You deserve to feel completely comfortable with yourself. With or without the tube, your appearance will not change. You will still be the beautiful person you were before you got the tube, except now you have a little accessory to carry along with you.
- Don’t be embarrassed about having a tube! I know that some of us fear being made fun of. It is especially difficult having a tube as a child and having to explain this to kids my age. When I was little, kids would ask me what was on my face, and I would simply tell them that I was a little sick, and for now, I had to bring this little friend with me to make me feel better. Always, no matter what, be yourself. When you have a tube, you should never feel embarrassed or ashamed for having one.
- No matter what tubes you have on your body, they won’t change your beauty. Living with tubes is complex, and it’s easy to feel self-conscious. However, I want to tell you that either way, you are beautiful.
- Most importantly, live your life, always choose joy, and always have faith. Life will get hard, and sometimes it will suck, but things are going to get better eventually. Maybe not right now, but having the faith to get healthy is the first step to winning the fight.