This week is National Feeding Tube Awareness Week! Since I’ve had a feeding tube for many years now, I thought I’d share a little bit about my experience with it today. I put up a question box on Instagram asking you all what you’d like to know about it – I realized that while I share a lot about being disabled, I don’t share a lot about my feeding tube. But while it might not be visible, it actually is a huge part of my life! So I’m answering some of your questions today.

How long have you had your feeding tube?

I’ve had my feeding tube since 2013 – it will be 10 years in November! To give a little backstory, sometime around 2011, I was having major shortness of breath and a racing heart whenever I was sitting up. It was majorly impacting my life, and really hard to deal with. After a lot of doctor appointments to figure out what was going on, we realized that I had lost maybe 15 pounds without realizing it – I weight the least I ever had in my adult life. I wasn’t trying to lose weight, and I don’t know exactly how gradually or suddenly the weight loss happened, and while people with SMA tend to be petite, my weight was unhealthy (for me).

I tried really, really hard to gain the weight back – I added fat and calories wherever I could, I drank nutritional supplements, I really tried. But basically, my body was using more calories just to get through the day than I could take in, and my weight just would not change. And because it was so hard for me to be sitting anyway, it was really hard to add in extra meals. It was mentally, emotionally, and physically exhausting. I resisted the feeding tube for as long as I could, but it became clear that if I wanted my quality of life to improve, something needed to change.

So I went ahead with the surgery. I have a small “button” that goes directly into my stomach, and I hook up to a pump that pushes the feeding tube formula in. As stressful as it was, ultimately, it was completely worth it, and my life has been so much better with the feeding tube than it was in the year beforehand.

How much do you eat during the day vs. how much do you use the feeding tube?

Typically, I use the feeding tube overnight to supplement, and then eat a “normal” three meals during the day. But my normal meals are definitely smaller than a typical person’s meals! I’ve always been a slower eater, and have eaten smaller meals as well. So in reality, the supplementing I’m doing overnight is actually more than 50% of the calories I take in a day, easily.

And recently, I realized that I’d lost some weight again (likely a GI side effect of my SMA medication), so I had to revisit my approach to my nutrition! I switched to a higher-calorie formula, and I’ve been eating a smaller, earlier dinner and getting hooked up to my feeding tube (and getting into bed) much earlier each evening. This lets me easily and passively get extra calories in! It’s definitely been a shift, and weight re-gain is sloooow, but it’s getting better little by little.

How can we be more inclusive at work / social events that center around food?

I love that so many people asked this question!! First, I think it’s important to now that some people with a feeding tube can eat by mouth too, and some can’t. And some people can eat a very limited diet by mouth, with specific foods. It really depends on the person! So if it’s a work event, I think the best thing you can do is ask about dietary restrictions, and then be willing to work with a person’s needs. Ask them what they would prefer – to bring their own food, or for them to let you know what foods they’d prefer? Be open and flexible! If it’s a social event, people typically understand that food is going to be served. If it’s something like a gala or fancy dinner, asking the same questions you would for a work event would be appropriate, but if it’s a casual event at your house, you can assume that the person with the feeding tube knows what they’re getting themselves into.

But the MOST important thing, no matter the context of the situation – don’t pressure people!! It’s exactly like not asking someone why they’re not drinking alcohol. You can offer someone food, but if they decline, just accept it gracefully and move on. Don’t ask them again, and don’t make them feel bad about not having food in front of them, even if everyone else does. Because feeding tubes aren’t necessarily visible, you can never really know who has one. Honestly, not questioning people about their food choices is a rule that should be followed regardless of context, but is extra true if you know someone uses a feeding tube.

Does your feeding tube affect what you wear?

I’m paraphrasing this question a bit – a friend sent in a similar but more joking version of it – but it’s something I want to talk about! I did actually change my wardrobe a bit after my feeding tube. It’s not that I want to hide my feeding tube, but I’ve found it’s not comfortable to wear clothes that are really tight up against it, and I also found it tends to… leak a little bit if things are too tight. So I try my very best to keep my tops loose, and I definitely don’t wear anything high-waisted on the bottom! By now, I know just by looking at clothes if the seams will hit me at the right place or not. I’m a pro at online shopping!

Any advice for a mom of a kid with a feeding tube worried about how other kids and parents react?

This one is a little hard for me to answer, because I got my feeding tube, in my 20s, but I’m going to do my best! First, I don’t think kids ever really care about things like this. They might be interested for a minute or two because it’s different and new, but as long as you don’t make a big deal about it, kids won’t either! Answer any questions they have openly and honestly, and make sure your kid has some basic understanding, too.

I think that other parents are a little trickier, honestly! Parents tend to worry about medical things they’re not familiar with, which is understandable. If your kid is going to a friend’s house for a play date, sleepover, or something similar, I’d probably come up with a few paragraphs or bulleted list with general information about the feeding tube! Provide them with information like: Can you kid eat or drink anything by mouth? Who should they call if something goes wrong? Are their any activities your kid should avoid? Being upfront about basic information – and assuring them that it’s really not a huge deal – can go a long way to make people feel more comfortable.

If you have any more questions, leave them in the comments and I’ll do my best to answer them!