The Question About My Feeding Tube That Bothers Me Most

I’ve been a “tubie” (as the cool kids call it) for about five months now. It’s been an interesting adjustment, and just like any other chronic medical situation, it takes some getting used to. I’ve had to learn to find ways of distracting myself so I don’t crave food. While everyone else is on their third slice of pepperoni lovers pizza, I’m trying to breathe through my mouth so the delicious smell of pizza doesn’t make me cry (since I can’t eat it). While most are sitting down at the table to enjoy dinner or are spending time cooking a meal with their family, I’m filling up my pump bag and starting my afternoon/evening feed. I used to be able to eat a little of whatever my family was eating, but I was recently told to stop that as well because my system isn’t handling solid food very well anymore.

There is one question I get asked fairly often that I can honestly say gives me a twinge of anger: “So how much longer do you need to have that tube?” Or, some ask the same question worded another way: “So how much longer until you can eat again?” The answer to this question is both simple and complicated. While I cannot predict what the future holds for my health, I can say that as it currently stands, I’ll likely never be free of the feeding tube. If I am, it will probably be because I’ve transitioned to TPN instead. I’ll likely be limited in what and how much I eat for the rest of my life.

This might seem like a perfectly innocuous question, but there are a few reasons why it rubs me the wrong way. For starters, I don’t really know the exact answer to that question, so it’s difficult to answer. It would be like asking a recovering accident victim when they’ll be able to walk again, or asking how long they’ll need their wheelchair. There is no concrete answer for this, and it brings me to my next point; it’s insensitive. Being asked this question is just another reminder that my body feels broken. I would love to be able to eat like a “normal” person, but I can’t. Being asked when I’ll be free of my tube is just pointing out to me that I’ll probably never be able to eat normally again. When I spend most of my day trying to avoid thinking about food and eating, this is definitely not a topic I want to be brought up.

The next reason this question is inappropriate is that it insinuates that my quality of life or my worth is somehow diminished by my tube. The fact is, my life is made possible because of my tube. If I didn’t have my tube feeds, I would be quite literally starving to death. My tube feeds enable me to be healthy and have the energy to work and have fun with my children. I’m still at the doctor’s office more than the average person, and I still experience frequent hospital admissions, but I would be wasting away to nothing without my tube, and on my way to an early grave.

Maybe people ask me this question because they couldn’t imagine having to deal with this situation if they were in my shoes. I get that; I get that this looks really hard. Fact is, it is. But, I’ve learned (and am still learning) how to make adjustments in order to accommodate the changes I’ve had to make. I’ve had to learn to be strong, even when I feel like I’m about to break. While this might never be a situation that you personally need to deal with, it’s a situation that I’ve learned to live with.

You might be asking yourself, “Well, what should I say?” This will vary from person to person, but in my specific case, I would prefer people say nothing. But, if you really want to ask something, I do genuinely appreciate a “Do you need anything?” check-in from time to time. I’ll probably say no 99% of the time when people ask, but I do appreciate the gesture, and every once in a while if I’m in a bad flare-up, I might take someone up on that offer. I just want to be treated like any other average person. I don’t need or want pity. Thanks to the medical interventions that I’ve been blessed with, I’m empowered to live a normal life, and at the end of the day, that’s all that should matter.